Team Tumor Erradication

researching the next steps

2012-02-14T16:07:00.000-08:00

We again went to see Dr. Peter Chen - Mark's radio oncologist
He checked out Mark and said all his body functions looked good and his tumor wasr emarkably localized.  He said Mark is a great candidate for radiation again.  He said that there is less risk of a swelling reaction since his body has recovered from the previous radiation treatment for years.  He mentioned that they have had good results with recurrence. The radiation would be delivered in fractionation in high dose over 5 treatments (600Centigrade)

It takes about 1.5 weeks to plan, so Mark is in today to get mapped and fitted for the mask and start with preparations.

We are also working to  connect with Dr. Linda Liau for surgery consultation.  We are hoping to setup up a language eval, brain lab mri and functional mri so she can determine if surgery is a possibility.  We are still trying to schedule and hope these tests can be done soon so decisions can be made asap

more growth apparent

2012-02-08T16:04:00.000-08:00

We went back for the first follow-up MRI after switching to the CCNU chemotherapy round. Unfortunately, the two hot spots got a little bit bigger, so it was determined that Mark's tumor does not respond to CCNU and a new plan of action needs to come in play.

From Dr. Cloughsey's perspective, he doesn't think surgery is an option because it looks like the tumor is in the motor and sensory areas and may cause problems with loss of function. He will be working with Dr. Linda Liau (neurosurgeon) for a final opinion on the feasibility of surgery.

Fortunately, the hot spot is in a pretty localized area and isn't lighting up in other parts of the brain. Because it is well localized, radiation (300 centigrade over 10 days) is an option paired with avastin (3omin intravenous every 2 weeks). This treatment combo has had good local control results and along with avastin's anti-tumor capabilities it also helps reduce swelling from radiation. Before we can do this, we'll need to set up a consultation with the radio-oncologist to see if he would be able to prepare the treatment based off the past 3 scans. I've already got all of the scans on a CD and have a call in to the radio-oncologist to set up an appointment.

Dr. C has already put in an order for the Avastin so we can get the ball rolling and make sure insurance issues are in order while we wait for word from both Dr. Liau and the radio-oncologist.

There is a phase 1 trial that Dr. C is also considering that involves delivering a certain virus to the tumor area through a biopsy. They have been getting good results, but the catch is that once the virus is inserted you have to watch it grow for 4 weeks while the virus gets activated to see if it is going to attack the tumor. At this point, Dr. C is favoring the radiation/avastin combination over Trials, since we can still do radiation while the tumor is still small.

So next step is we wait for Dr. Liau's recommendation and the radio-oncologist consultation

some change in the scans

2011-12-22T11:10:00.002-08:00

Had another MRI yesterday, but this time it looked like there were two new "hot spots" near the area we've been watching this year. The doctor says that it is not definite that it is tumor but is about 70% sure. He said that we could do further tests like dopa scans or other tests to get us to a 90% assurance, but they could take a while to schedule/get results, so he suggested that we treat it like it is tumor and take the next aggressive step to halt it. The next step is a different chemo called CCNU. Fortunately, it can be taken orally as well and slightly less side effects (ie constipation) than the temodar. This medication has a 1 pill, 42 day cycle (Temodar was 5 pills, 28 days). Since Mark is still within the 28 day cycle of his last round of Temodar, he has one more blood test to take on Monday to make sure he is cleared to start the new chemo. Luckily, the timing of this chemo and next blood tests/doctor appointments do not conflict with Mark's big Israel trip he's taking next week! So, Mark will get blood done on 12/26, leaves for Israel 12/27, will take the single dose of CCNU on 12/29, be in Israel til 1/17 and then will be back to start getting the weekly blood tests to assess his counts and how his body is tolerating the new chemo. He will also be taking a bottle of decadron (steroid) on the plane with him, in case the altitude/pressure causes any swelling and leads to a dull headache that makes him uncomfortable. His next MRI and doc appt are 2/8. If this medication works well, he can continue it for 5 more cycles. We're also going to be looking at which trials are available that Mark qualifies for as well. Surgery is not a good option at this point, since the area is too close to the speech zone. Mark actually feels fine, no change really, a bit tired, but no seizures.

tst

2011-12-22T11:10:00.001-08:00

steady

2011-06-29T19:08:00.000-07:00

Had another MRI today and again the tumor was stable with maybe a slight reduction. Blood counts were pretty good this time. He did go into the appointment not feeling super great. We just returned from a family trip to Hawaii on Monday and since then he's had a fever and not feeling 100%. His muscles were quite fatigued from heavy lifting his nieces all week too ;) Scan looking good, he'll go on another two rounds of chemo and we'll be back for the next MRI in 8 weeks on 8/24

Staying Stable

2011-05-27T18:42:00.000-07:00

Mark went into this appointment with a bit of a headache and sore throat (however, Brock and I seemed to have a similar bug).

The new scan was stable. It looked about the same as the last scan with maybe a slightly reduced area. Mark will continue to a 3rd round of Temodar.

His blood counts were good, but slightly lower in lymphocytes so as a precaution he'll also be taking Bactrim (antibiotic) to help his immune system.

The next MRI is scheduled for June 29

round 1: Temodar is winning!

2011-04-27T20:24:00.001-07:00

Mark had his first MRI after round 1 of chemo after recurrence
His mri was better, looks like the temodar is working!
His tumor area shrunk significantly...
He is starting another round of chemo today
MRI in 4 weeks

we also asked about bradykinin which is something being used in a trial in Univ of Alabaman
Dr. C they did trials with this in '97 without good results. At this time, not recommended from UCLA

DOPA results & treatment options

2011-03-31T08:32:00.000-07:00

Went back to UCLA to get the results of the DOPA PET scan. Unfortunately, the area on the dopa scan is positive which does indicate tumor. It verified that it is the same area of contrast we saw on the earlier MRIs. The new tumor is in a crescent shape around the resection area and has infiltrated into more sensitive areas of the brain.

options
surgery – at this point, the tumor is not causing any symptoms, the risk with surgery is that it can possibly take away tumor, but can cause symptoms that would be undesirable; unfortunately though, without tumor we can’t do dendritic cell vaccine

radiation – is an effective therapy, however, since it was given only 5yrs ago, it probably is not long enough to repeat and increases the likelihood of radiation damage (tissue breakdown) which again can cause undesirable symptoms

chemo – there's alot more data that exists today that when temodar was used successfully before and recurrence occurs greater than a yearafterwards..patients typically do really well on temodar again. This is Plan A that Mark is choosing for the first fight. Mark has already taken round 1 and we're waiting for the bloodwork on day21 and day28 before doing round2. We also asked about the risk of leukemia? Typically the risk is higher when you do a continual dosage which is why we stopped after 2 years. If a patient had a durable response while on Temodar the first round, it is a reasonable initial treatment choice for recurrence.

Metronomic doses of Temodar? – instead of 5 out of 28, it can be done week on week off or 21 days straight, it tends to affect white counts more (concern for Mark since he had issues with low counts last time around). The studies haven’t seen data that supports that it is any better than the normal dosage for tests done on recurrent tumors.

combining chemos – we could do this, but so far there isn’t a lot of good data with the agents they typically combine with (ccnu, acutane, etc) that warrant this choice as an initial treatment

avastin (now FDA approved!) can be more effective than temodar alone; however studies show that it works better when clear VEGF (vasculin growth factor) is present in the tumor area which can be noticed by evidence of swelling/adema. At recurrence you could go to avastin, but they believe that it is better to save til later on. Better to see if you get a response out of temodar. Avastin use can also exclude you from several trials. At this point Mark's tumor area isn't displaying these VEGF characteristics so Avastin isn't yet being suggested as part of plan A.

dendritic cell vaccine - there is no longer any of Mark's original tumor available to create a vaccine, surgery would be the only way to get another piece, but risks are high so it is not yet suggested. We asked about a synthetic version of the vaccine. Apparently there is a group at Baylor that trials one. It has a set number of antigens they combine with dendritic cell. It is often used with radiation but when combined they can’t see if there is a benefit from the vaccine or from the radiation. It is not typically used in recurrent setting. So far there don't seem to be any side effects if this is used. This could be an option Mark may consider.

Novacure headpiece - Electric field therapy to stop GBM cells from dividing
there is a phase 3 trial going on at USC, UCSD where they send an electric field over two grids. In a petrie dish it looks good, tumor cells don’t grow, however it is not yet proven if it goes through the skin/brain and produces the same results? They've had patients at UCLA try it out, but they complain about the burdensome nature of the treatment. You have to wear the device all the time, shave your head for good connection and carry around a 10-15 lb battery a minimum of 20hrs a day. Men seem to tolarate better because the battery is heavy. There don't seem to be any real side effects

Carl Berg/molecule?
Dr. C did look at some documentation on this molecule. At this point, there isn't documentation given didn’t show any evidence of success in glios. Dr. C said that he would talk to the doctors involved with this trial if we want him to.

what's next:
bloodwork to be done 4/8 and 4/15
next MRI 4/27

DOPA Pet scan

2011-03-31T08:18:00.000-07:00

3/29/11
Mark was finally able to go in for the DOPA PET scan today. This procedure is supposed to give a really clear picture of what is going on and identify tumor or not.

It is actually an experimental procedure and is not widely performed. They need to create radioactive isotopes to inject and read through the scan. They are very unstable and difficult to make. Because it is so difficult, they only do this once a week for a small number of hours/patients (which is why it was so hard to get us in). Mark is radioactive for the day, so no kissing babies or pregnant women for 24 hrs ;)

There are only two places in the US that have the equipment to do a DOPA PST scan. UCLA actually invented the procedure and has the equipment. Anyone who wants to be trained in its use has to go through UCLA. There's another place in Florida that has the equipment as well.

We'll be talking to Dr. C tomorrow about the results and ask the other questions that we've been loading up.

latest info

2011-03-18T13:29:00.001-07:00

Well we at last got a little more information, but it isn't necessarily the best news. Since we were unable to get a PET scan scheduled, we decided to go back in for an MRI to check things out. The new area of concern does seem to be a bit bigger than what we observed 4 weeks ago. We also observed another scan that showed blood flow and it does show an increase in blood traveling to the area in question. Dr C is again pushing for us to get the DOPA PET scan. This scan would help us determine for sure if it is tumor or not, or if it is a "cold" spot to keep watching. Once we see this result, Dr. C is already recommending Mark start back on chemo treatment. We're planning to start back on Temodar (chemo) as soon as the PET scan is done/read which we're hoping is Tuesday, 3/22. The new area to watch is outside the old tumor area somewhat and a bit more toward the center of the brain. The doctor said due to the areas where we're seeing this new change, surgery is most likely not an option because of the sensitive brain functions that could be affected there. Since Mark had alot of radiation 5 years ago, they are not recommending radiation at this time because of the intended damage this could cause. Not necessarily the best news to get...

still waiting to get the new scan

2011-03-11T06:44:00.001-08:00

Well, we're still waiting to get the DOPA PET scan. We were scheduled for this past Tuesday, but it got rescheduled to Wednesday. On Wednesday, Mark did the big drive up to UCLA only to find out that the machine was broken! We then got rescheduled for Friday 3/11, but got a call today that the machine was still broken and it could be 2 weeks or more before it was fixed?! Needless to say, this is getting to be too long for us to wait :( We have an email in to Dr C to see if we can get the scan done at another facility or if there is another option? This waiting stuff is for the birds...

some change, could use some prayers

2011-02-16T16:31:00.000-08:00

Mark had an MRI today, but this time it did show something a little different. There was a bit more fuzziness and light color around the cavity area than we normally see. Dr. Cloughsey said it doesn't normally look like what he sees when there is tumor growth and it could be an artifact of the scan, but it is a change so we're going to investigate more. We're looking to schedule a PET scan (hopefully on Tuesday) that will help detect if there is tumor growth or if it is just an anomaly in the scan. This test will inject dopa into his system that goes right to the brain. When reviewing this scan, they'll be looking for normal areas to be bright and look for any other unexpected areas that may light up that could indicate something else is going on. We're waiting for insurance to approve this test and it is only performed on Tuesdays. So if we get scheduled this Tuesday, it takes 24 hours to get results so we wouldn't have any information until Wednesday. Hopefully we'll get in next week and not have to wait longer. At this point, try not to worry but send prayers and positive thoughts!

still all clear

2010-09-21T07:20:00.001-07:00

Last appointment was 08/18/10....all clear

All's still clear

2010-04-23T08:24:00.001-07:00

Had another MRI this week and everything is still all clear! No change in the cavity and Mark easily passed all of the normal neurological tests. Next checkup in 9 weeks :)

still clear

2010-02-11T15:40:00.000-08:00

We're on the 10 week MRI schedule these days, so it seems like it has been forever since we last had to head to UCLA. Things were all clear and no changes in the scans. Mark is still feeling and looking good!

4 years later

2009-12-03T08:57:00.000-08:00

This month marks 4 years since we first found out about GBM. Another visit with great results! No changes in the scan...again :) The doctor even wanted to put us on a 12 week comeback schedule, but we felt a bit more comfortable sticking with 10. Next MRI is in February. Happy Holidays!

scans still remain unchanged

2009-10-16T07:21:00.000-07:00

Our most recent checkup was on 9/30/09. The scans still remain unchanged!

ho hum...

2009-07-29T17:28:00.001-07:00

Scans still unchanged...boring is good!

we've graduated to 10 weeks

2009-03-19T09:22:00.000-07:00

Mark had another great appointment that showed no change in the cavity. The doctor laughed, because Mark basically went through all the neurological tests without even being asked! Guess that shows that his memory is still going strong :) We've been going every 8 weeks to get an MRI and check up on things. We have now graduated to going every 10 weeks. This is a great sign, since Mark's condition has been so consistently stable. Mark continues on his seizure medication and has reduced the amount of melatonin he takes from 20mg down to 5mg.

boring is still good!

2009-01-15T16:17:00.000-08:00

We had another checkup and things are still unchanged, which is the way we like it :) Mark has had two mild seizures since we last saw the doctor, but they seemed to be related to days that he missed taking his anti-seizure medication. He complains that his vision seems to be getting fuzzier, but we're not sure if it is chemo after effects, or dare I say...age (we hate that answer ;) )? He passed all the typical neuro tests and the scan looked great. There is now a generic version of the medication he takes, so we'll keep an eye to see if there are any weird symptoms related to taking a new medication. He's pretty much got our guest bath down to studs and is building it back up to be awesome and he starts going back to school this month too! Things are great :)

boring is good!

2008-11-20T07:43:00.000-08:00

Mark had another checkup this week. Nothing new to report, everything was exactly the same...boring...but boring is the best news! MRI was unchanged, nothing to be concerned about in the blood reports. All neuro tests were passed with flying colors, although Mark was defiant and not wanting to answer the math questions ;)

Things still looking good!

2008-09-19T15:04:00.000-07:00

We met with Dr. Lai this time how reviewed Mark's scan and told us all there was no change (which is a good thing)! Mark has not been complaining of any headaches and no seizures. Mark had some blood drawn to send to the nutritionist for a checkup to make sure we're still on track on our supplements regimen. Mark's been enjoying being on disability and has decided to go back to school to study Apolgetics :)

clean scan and new backyard!!

2008-07-10T08:16:00.001-07:00

We went in for another checkup this month and met with Dr. Cloughsey. There was no change in the MRI scan, which is all good. Mark has been complaining of being tired, but then again, he has been working hard on our backyard project. (Since the last checkup, Mark has gone on disability and has been enjoying focusing on the house. We now have a backyard that we can party in!!! Yay!!) He also complained of a dull headache at the base of his head, but the doctor said there was nothing in the scan that would indicate any trouble and it may also be related to his hard work and not drinking enough water. Since Mark is no longer on chemo, he hasn't taken a blood test in a while, so the doctor mentioned that he should still probably get a test every 6 months to make sure things were ok. He had a blood test yesterday and no reports of any concern. Mark also had questions about the long term affects of treatment. He was hoping that the "chemo brain" feeling would go away now that he is no longer taking the drug; however, he still feels the effects. The doctor said to give it a few more months of being off the treatment to see how he feels, but we're hoping some of that feeling will go away. Next scan 9/17

no more Temodar, clean scan, no work and a walk

2008-05-08T08:24:00.000-07:00

Mark has now completed 24 rounds of Temodar and is currently no longer taking any chemotherapy!! There is a risk of developing Leukemia if you stay on the drug too long, so the standard treatment is 24 rounds then you come off and continue with scans indefinitely.

Mark had another MRI and doctor visit yesterday. He passed all the neurological tests with flying colors and entertained the student nurse by answering some of her questions in Spanish ;) He has practiced spelling "world" backwards so many times that he now has it memorized, so when she asked, "Spell world," he instinctively spit out "d-l-r-o-w" in lighting speed. You should have seen the look on her face, 'cause she asked him to spell it forwards!! We met with Dr. Cloughesey and all scans remained unchanged, so good news there. He also met with Dr. Liau last week for another dose of the dendritic cell vaccine.

Over the past few months, Mark has complained of more fatigue and does seem to get tired alot. His work recently went through some down sizing and Mark was now required to do more of the calculations and bidding. Since numbers and word recollection seem to be some of the areas that are affected by his tumor, he was feeling more and more pressure and frustratation on a daily basis. He has since sought council with the social worker at UCLA and will be going on state disability for the next year. The interesting thing about this program is that they also provide career counseling and training to help patients find areas of work that are more satisfying and require less emphasis on the areas that seem to cause him trouble. I think the backyard project will be good relaxation therapy for him too ;)

This weekend (May 10th), we will again be participating in the Tom Atkinson Memorial 5K to help raise funds for the UCLA Neuro-oncology program. This walk is being sponsored by brain tumor patients and families of those that have lost loved ones to this terrible cancer. Brain cancer research gets a tiny percentage of the medical research budget and since we have a vested interest in their outcomes, we’re hoping to help contribute in as many ways as possible. All donations go 100% to the cause and we're hoping to raise more money to help the doctors continue to find new ways to fight brain cancer.

If you’d like to help us through an online donation, please visit the following website:
https://giving.ucla.edu/braincancerresearch
Under Gift Options, please be sure to put “Team Pace” in the tribute gift section, so our team gets credit for your generosity :)

unchanged again

2008-03-17T08:52:00.000-07:00

We had another MRI on 3/12/08. Everything looked the same and there were no changes. Mark passed all of the neurological tests. He is currently starting his 23rd round of Temodar. After this round, just one more to go and then he's through with Temodar but will continue with the dendritic cell vaccine as long as it is still available. We also had talks of tapering off the seizure medication, but for now will remain at the usual dosage.

another easy check up

2008-01-17T14:02:00.001-08:00

we had an MRI and doc appt on 01/16/08
the scan was unchanged and looked exactly the same
Mark passed all of the neurological tests. This time they threw in a new one that stumped him at first (count from 100 backwards by 7s) but he did it with flying colors :)
We still have yet to have another dose of the dendritic cell vaccine, but we are in scheduling now that they're growing more tumor to make the vaccine.
Next appointment will be in March

all clear!

2007-11-26T09:08:00.001-08:00

Had an appointment on 11/21/07 for an MRI and meeting with Dr. Claughesey.
The MRI looked unchanged, nothing to be concerned about and Mark passed all of the normal neurological tests. He even spelled 'world' backwards! He started another Temodar round 11/24 and will be done before we head off to our family reunion cruise to the Carribean next week!

running out of vaccine

2007-11-06T06:45:00.000-08:00

Mark has been doing great since the last post. He continues to take the monthly Temodar and has been tolerating it well. He does seem to get a bit more tired than before; however, he still gets out and works out hard on his bike and in the gym. There have been no signs of regrowth in the last MRI and we have our next one scheduled for Nov. 21st. He has been continuing with the vaccine; however, we got a call this week that the tumor cells they have in storage aren't reproducing quick enough for them to make another vaccine, so it could be a while before he gets another dose. Maybe it is a silver lining to know that his tumor cells are underachievers and don't want to grow fast?!

things back to normal

2007-08-02T09:08:00.000-07:00

Had MRI and appointment on 07/25/07
met with Dr. Cloughesy
Since last month the docs thought they saw blood in the cavity, we scheduled a MRI for a month instead of waiting for two. Mark did have a significant seizure on 07/03/07 that worried us, but after looking at this MRI, everything seems pretty much unchanged. When looking at the MRI, we compared the last three months and there really weren't any differences between them. Last month's MRI was a bit brighter, but didn't really look like any significant changes and this months scan looked the same as May's. There is no signs of swelling and no evidence of any tumor growth. Mark has been feeling more tired lately, but it is most likely due to 15 rounds of chemo! Next scan will be in early September.

slight change in latest scan

2007-06-29T08:26:00.000-07:00

MRI and appointment on 6/27/07
Mark took his last round of Temodar on 6/5-9/2007. He tolerated the treatment well, but has been feeling a bit more fatigue than usual, but has been very active lately. He hasn't had any seizures, headaches or other problems. In a church softball game last Sunday, he got hit smack in the head by a ball. When viewing the MRI this month there was change in the scan; however, due to the contrast that was observed, this change likely represents blood products rather than tumor and there is no increase in mass effect. We have seen blood in the cavity before and coincidentally, the last time we saw blood there he had also been hit in the head while playing ultimate frisbee. This time he got hit with a softball, so we think the head trauma may be related to the blood. The doctors indicated that they do see evidence of blood in the cavity from time to time in patients that are also on the dendritic cell vaccine. Since he does not have clinical symptoms related to the scan changes, we will continue to observe the change for now. They scheduled his next MRI for 2 months, but just for piece of mind, we'll be trying to schedule one in a month instead. He will be starting a new round of temodar next week and has another vaccine coming up later in the summer. Mark continues to ride his bike on the weekends too :)

another smooth check up

2007-05-07T10:20:00.000-07:00

05/02/07
We met with Dr. Lai
last Temodar staredt 04/10/07
Mark had a small seizure on 04/11/07, but had forgotten seizure meds on that day and was up late
Mark is in tip top athletic shape and wows the docs with his resting heart rate of 44!
He passed all neurological tests and had practiced spelling world backwards, but they didn't ask him this time ;)
The scan looked unchanged.
They had a new process in the MRIs to add a new sequence to see surrounding change in tissue which looks stable in Mark's scan too.
Mark is taking a blood test today to see if he can start back up on Temodar this evening.
He'll start up another round of vaccine in 2 weeks as well.

This Saturday (May 12th) we'll all be participating in the Tom Atkinson Memorial 5K in Long Beach. Our team has already raised over $4,000 and as a whole fundraiser, I'll bet we at least make $20,000!!! Wish us luck. For more info see: www.jeanniescure.org

still rolling along

2007-03-08T08:24:00.000-08:00

Had an MRI and appointment with Dr. Cloughsey yesterday and Mark's scans were again unchanged. The doctor said he didn't see anything that he was worried about. Mark had taken his Jan and Feb temodar on schedule without any side effects. He did report a small "euphoric like" seizure on 2/13 that lasted for a half an hour, but felt that there were other circumstances (eating late, not getting enough rest,etc) that may have contributed as well. Mark had his blood work done again and everything was up to par and he's cleared to start the next round of Temodar, starting Saturday night. Since the last post, Mark has also had another injection of the dendritic cell vaccine without incident. There are two more boosters that will be available to him during the trial over the upcoming months.

Plans are in the works for a Tom Atkinson memorial 5k that will be held mother's day weekend in Long Beach. We're all training to get ready for it and will starting to be raising funds as well. All of the money will go to jeanniescure.org which directly supports research for UCLA Neuro-oncology and is helping to fight brain cancer. Stay tuned for details.

Mark is headed up to Solvang this weekend to do another century bike ride with his bike club!

Happy New Year!

2007-01-11T10:10:00.000-08:00

Just back from our big New Zealand vacation and Mark admittedly fell off of his strict diet...but hey, that's what vacations are for, right? Now back in the states, we had another MRI and meeting with Dr. Cloughsey on 01/10/07. Again, the scan looked pretty much unchanged and there were no significant new enhancements or areas of concern. He had a blood test and all was well, so back on Temodar starting 01/11/07 and for the next four days. Last month, we had a LIVING STRONG party to celebrate Mark's "1 year since diagnosis" anniversary and that he was doing so well! It was great to see all of the family and friends and have a chance to really celebrate the miracle that we're still living!

1 year later...

2006-12-14T08:24:00.000-08:00

Since the last MRI, Mark got a boost of the dendritic cell vaccine (11/22/06) and started his 9th round of chemotherapy on Temodar (11/29/06). Everything was going well, but he did experience small euphoric seizures on 12/01/06 and 12/10/06. He hadn't had any seizure activity since May '06, so it was a bit concerning. As a precaution, we went in for another MRI and checkup (12/13/06) and everything was fine. The scan was unchanged since last month, no swelling, nothing unusual and from the scan, there wasn't any obvious reason for the seizures. The doctor mentioned that sometimes, changes in the weather pressure or holiday stress can trigger episodes as well. Since we do have an upcoming trip planned, the doctor did prescribe some steroids as a precaution in case the pressure in the airplane causes headaches; however, they really didn't think there was a concern. As a side note, 12/19/06 marks 1 year since our initial diagnosis and obviously, Mark is beating the statistics and still LIVING STRONG! To celebrate, we're having a party this weekend with family and friends to mark this inspirational milestone. Woo hoo!

Coming up:
01/10/07 MRI and checkup

Mark 's Cancer Fighting Smoothie

2006-11-16T07:37:00.000-08:00

For those of you that come across this blog, we want to share this recipe with you. This is something that Mark takes everyday and really helps get down some of those essential cancer fighting ingredients.
Enjoy!

Mark 's Cancer Fighting Smoothie

Ingredients	Amounts	Possible Brands
Green Tea	8 Ounces
Organic Wheat Grass Powder	1 TBS	Amazing Grass
Kidz SuperFood	6 grams (1 Scoop)	Amazing Grass
Organic Cinnamon	teaspoon or to taste
Organic Ground Flax Seed	1 TBS
Organic Flax Oil Filtered	1 TBS	Spectrum
Organic Plain Whole Milk Yogurt	1/4 to 1/2 Cup	Straus European Style
Add organic blueberries	2/3 cup	Usually frozen
Add organic raspberries	1/3 cup	Usually frozen

If on Chemo, I put in Miralax Powder for constipation.
Blend until mix is smooth.
Lastly, turn off blender and add :
Whey Protein Powder	1 scoop is 20 grams	"Whey to go"
This is the best Whey I have found. It contains 16 grams of protein per 1 gram of sugar.
By the whey, cancer loves sugar. "No, whey". "Whey".
If you need a sweetener use Stevia or organic liquid blue agave nectar.

steady as she goes...

2006-11-09T10:29:00.000-08:00

Appt 11/08/06
Temodar started 10/31
Scan looks good. The cavity is a noticeably smaller than 2 months ago. No new enhancement noticed. No seizures, weakness, numbness. Still had trouble spelling "world" backward ;) We asked about getting a Jacuzzi-it is possible that it could increase swelling in the brain, but it should be fine. Asked about ice hockey, he is at more risk of head trauma because of the crainiotomy, but should be ok since he is in great shape and isn't in a check league and wears protective head gear. We asked about an alternate dosage of Temodar (14 days on/off). Dr. Cloughsey said that it is actually more of a dosage and is often even harder for the body to tolerate. He doesn't necessarily think Mark needs to change now, because Mark's body is actually now able to tolerate the recommended dosage. Come back Jan 10th for MRI and appointment. Will be starting another Temodar round in early December.

Ride for the Roses in Austin

2006-11-09T10:27:00.000-08:00

It was an action packed weekend. Mark, Debbie and Sharon first got to attend a special welcome BBQ at the Salt Lick and had a great time mingling with all of the other riders, Lance and Jake Gyllenhaal! Mark also got to attend an exclusive one on one autograph signing with Lance Armstrong. He got to spend 3 minutes with Lance and talk about his experiences, get him to sign a jersey, share his connection with Klaus Barth and have some laughs. To see the photo series from the signing, check out this link and keep clicking on the next photo. The resemblance between the two is amazing...

http://www.kreutzphotography.com/default.asp?LOC=%2FKPhoto%2FPhoto%5FViewPic%2Easp%3FDID%3D24%26FID%3D3337%26GID%3D925%26IMG%3D250%26PAGE%3D%26PWD%3D%26SRCH%3D%26TYP%3DPUB

The biking trio then got to attend a kick off dinner complete with good food and lots of inspirational stories. While they all attended the dinner, the rest of us tried to see the famous bat cloud at the bridge, but it was kind of a bust! We did get to see a sea turtle and enjoy some awsome BBQ at Stubbs.

The day of the ride was a bit rainy. A bus came to take all of the riders to Riverbend Park which was outside of Austin a ways. Since we were driving, I got directions to the park from the concierge; however, he didn't know where Riverbend Park was, so he googled it and we found it was in San Marcos (about 45 miles south of Austin). The cheering crew headed out about a half hour behind the riders, following our newly obtained directions. About an hour later of confusion and lots of gas station stops where no one knew what we were talking about, we realized that the Riverbend Park we were sent to was an RV park and NOT where the ride started!!! (have a funny photo for proof) At last we got back on track and caught up with the riders. They had shortened the ride to 70 miles, not 100, because of the rain and Mark claimed it was one of the easiest rides he's ever done. Deb and Sharon made great time too and were the 3rd and 4th females to make it over the finish line! We wrapped up the evening with a celebration party (in a big down pour) and had a great Tex Mex Dinner to wrap it all up. Big success! Thanks again to everyone who helped get Mark to Austin from your generous donations and support!!!

Mark is still doing great! He's still on monthly chemo, but all MRIs have been clean and improving!! We have our next one scheduled for 11/08/06. Still living STRONG!!

just keeps getting better

2006-09-14T07:17:00.000-07:00

Appt 9/13/06
After fighting with the low counts for an extra week or so, Mark finally started Temodar on 9/1
He did complain a little bit of being tired this time around, but it could be due to all of the activity he did...long bike rides, surfing, etc....can't keep him still :)
At the appointment, the new scan looked noticably better, there was no new growth, the cavity was measurably smaller and the blood that was seen in the cavity last time around seems to be about gone. We still see the rim of contrast, but it is expected and appears unchanged. Since there is a pattern of low counts for Mark after taking chemo, we will now get counts checked at day 28 and 35 (previously 21 & 28). Next scan/appointment on November 8th.

counts are up!

2006-09-06T08:44:00.000-07:00

Mark's counts took a big jump (from 1.3 to 1.8) at the very end of August, so he was able to start up the Temodar again on 09/01/06 and just took his last dose yesterday. One more round of chemo, done! Coming up next, he'll have a MRI and follow-up doctor appointment on 09/13/06.

Still setting plans for the "Ride for the Roses" in Austin mid-October. Looks like his sisters may be riding with him again...Go Team PACE!!! Brock and I will be there to cheer them on :)

again waiting for counts to rise

2006-08-29T14:49:00.000-07:00

Since the last post, Mark's counts did eventually just scrape by the minimum and he was able to take another round of chemo at the end of June. Since then, he's still been riding high with his new biking passion and continues to put in 100+ miles every weekend.

Toward the end of August, Mark again started taking the blood tests to see if he was cleared to go back on the chemo. Unfortunately, his counts are still too low to go back on and we're waiting for his body to recoup since the last round. We're a little over 2 weeks late in the scheduled time he could take the drug, but we need his body to build back up before we can do so. Since Mark's MRIs had been clear all along, we're now on a 2 month schedule to receive the MRIs vs the 1 month plan we were previously on. His next MRI will be scheduled in mid-September and we will give you an update then.

So far, so good. Mark feels great and he's ramping up for the Ride for the Roses in Austin this October and will again be riding with his sisters as well as Lance Armstrong :)

We'd also like to have you all put our fellow warrior Tom & his family in your prayers. Tom recently passed away this weekend from a brain tumor and will be missed. Tom and his family have been a huge support to us since our first diagnosis and we want to continue to be there for them. We don't know what we would have done if we didn't first happen upon that first brain tumor support group...all of the members are a tremendous blessing to us all.

latest mri and stuff

2006-07-17T19:07:00.000-07:00

we had our most recent appointment on 7/12/06
He last took Temodar in June starting 6/12
Mark's last blood drawn on 7/6, showed that neutrophil counts were low, but we need to take blood again before restarting on chemo. The doctor explained that he won't feel anything when neutrophil counts are low, often plagues young healthy people (not sure why?), but his lymphocytes are ok. We had blood drawn on 7/14 and counts were slightly higher, but not high enough to comfortably start chemo. We had blood drawn again today (7/17) but the counts went back down slightly, so still can't restart at the point. When viewing the MRI, the swelling that we noticed on the previous scan seems to have reduced quite a bit from last time. There is contrast still just around the rim, but no new growth or nodules can be seen. Since cavity doesn't seem to be shrinking much, it is an indicator that the tumor has probably been there for a long time and grew slowly over the years.
Since counts are still down, we talked to the doctor about possibly taking a drug, Neupotin (sp?), that can boost the counts. They said they usually like to gauge how quickly the body can recover on its own from the previous chemo until doing something like that. Taking the drug doesn't actually boost your counts, it just stimulates your bone marrow to send out the young fighter cells sooner than your body would on it own. They said that they have seen that if they administer this boosting drug too often, the patient usually can't stay on Temodar for the hopeful 2 year period. It has been 4 1/2 weeks since Mark last started chemo. We will again take blood on Thursday to check counts. If his counts don't go up within another week and a half, the would consider Neupotin.

Other than that, Mark is feeling great! This past weekend he did another 80+ mile bike ride on Saturday and a big 40 miler on Sunday with hills! He feels and looks great :)

LIVESTRONG!

2006-07-06T08:09:00.000-07:00

Thank you to everyone that helped support Mark in the LIVESTRONG ride on June 25th! We found out that the Orange County ride was the first LIVESTRONG event ever! Because of all of the help from family and friends, Mark met his fund raising goal and was awarded a signed, framed Lance Armstrong LIVESTRONG jersey for getting the most individual donors! Mark and his sisters did complete the whole 100 miles (we measured it and it was really 105!). Mark claimed it was the hardest thing he's ever done. The course was pretty brutal...it started out nice along the coast then climbed up Santiago Canyon in the heat of the day (over 100 degrees)! My son, nephew and I became quite the popular cheerers. We suprised many riders every 10 miles or so, with a new sign, change of costume, added with lots of noise and enthusiasm...we were a hit! Mark measured that there was actually 7 hours of riding time, but with all of the red lights and rest stops, it took 10 hours!! It was quite an emotional and inspirational event and we couldn't have done it without the help and support of all of you!

dopa results and upcoming excitement

2006-06-20T06:20:00.000-07:00

Spoke with Dr. Cloughsey last night regarding the dopa pet scan results. He said that the scan showed an uptake aruond the rim of the cavity, which is inline with what we continually see on the MRI scans. He said uptake can be seen in tumor cells, necrotic tissue and sometimes inflamed areas as well. The uptake is caused by the amount of dopamine being used by certain areas of the brain. From reading the scan, Dr. Cloughsey said that there are aspects of what he sees that are unusual and makes him think it is not tumor cells and does not think that our current treatment should be changed based on this scan. The good news is that the extra swelling we noticed in the MRI and were worried about did not show dopa positive, so that hopefully eliminates the possibility of non-enhancing tumor in that area! There is a possibility that the ring around the cavity could be tumor cells, but they don't appear to be dividing or actively growing. He also mentioned that he has patients that have lived for years with this type of tumor cell that never changes.

Mark's radio interview aired early Sunday morning on K-RTH 101. It was a very inspiring piece and Mark really showed his determination and faith to beat this thing! A star is born! If we end up getting a digital sound bite, I'll send it out.

Well, the LIVESTRONG ride is this coming Sunday! Mark's two sisters are traveling down and preparing to ride with him :) The course is a total of 104 miles around Orange County. Brock and I and the rest of the family will be holding up signs and making lots of noise at the cheering stations. Mark did reach his fund raising goal and has now raised over $15,000 for the Lance Armstrong Foundation!!! His team (Deb, Sharon & Mark) are the 5th highest fund raisers in Southern California!!! As an added bonus, Mark gets an invitation to "Ride for the Roses" with Lance in Austin this October! Way to go!!!

good to go back on chemo + a star is born!

2006-06-13T07:57:00.000-07:00

Mark had another blood test yesterday and all of the levels were back up, so he was cleared to start back up on Temodar. For this round, he will take 300mg for 5 days straight and then will be off for 23 days with a few blood tests in between to see how he's holding up. He started last night and felt fine this morning. We also got the dopa pet scheduled for this coming Thursday. It takes more than a day to read, so there probably won't be any results until next week. Also, today Mark is going to record a radio interview about the LIVESTRONG ride! He's going to be speaking about his story and how the ride is inspiring him to LIVESTRONG :) The interview will be recorded at K-Earth 101 and will probably be aired on Sunday...we're going to see if we can get a copy.

What's next:
06/12-16/06 Temodar 300mg + Kytril
06/15/06 DOPA PET SCAN
?? evaluation with neuro-psychologist (Dr. Ingalls)
06/28/06 blood draw
07/?? MRI, meeting at UCLA
08/30/06 blood draw
10/25/06 blood draw
01/10/07 blood draw
02/21/07 blood draw
04/25/07 blood draw

latest scan after vaccine trial

2006-06-09T10:36:00.000-07:00

Mark had his last injection of the dendritic cell vaccine on 5/26/06. On 06/07/06, he had a blood draw, MRI and a meeting with the neuro oncology team at UCLA. According to the doctor, the scan looks fine , the cavity still seems to be about the same size and there is no new contrast enhancing areas that show up and appears to be stable; however, there does seem to be an increase of edema (swelling), but doesn\u2019t necessarily mean that there is tumor activity. It could be radiation changes over time, could be swelling from brain remodeling itself, could be related to dendritic cell vaccine, or could possibly be non-enhancing tumor, but they don\u2019t think it is that at this point. Mark and I were a little uncomfortable with this increase in swelling and are planning to have a DOPA PET scan that can highlight tumor cells that can\u2019t be seen in MRIs, to rule out possible non-enhancing tumor activity and just as a precaution. Dr. Liau says that she has seen increased swelling in some dendritic vaccine patients, and getting a DOPA PET scan is a good idea. We're hoping that it means the blood is in that area fighting the cancer cells! The other odd thing we found out in this appointment is that Mark's nutrophil (figher blood cells) count is too low. His overall white count was low 2.4, but his nutrophil count is 1.3, and needs to be above 1.5 before he can be cleared to start up chemo again. So he can\u2019t start temodar until we get it back up. We are revisiting the natural suggestions for boosting counts from Jeanne Wallace (i.e. leafy greens, protein, supplements, etc) to make sure we're doing what we can. He will have a blood test again next week to see if his counts go up. His counts have actually been borderline since the surgery and going on chemo the initial time, which is an indication that we may have trouble on chemo. If the counts go back up, he will only be on 300mg of temodar for 5 days then off for 23. If his counts can't handle that, then we'll probably switch to a lower dose, but extend the period for 14 days on, 14 days off. The last time he took chemo (before vaccine 3 months ago), his body did tolerate the 5/23 dose...so we're going to have to see how things work out. The addition of neurontin seems to have helped seizure activity, so we\u2019ll stay at the dosage we\u2019re currently at for Keppra and Neurontin. If counts go up, we\u2019ll also be on temodar, kytril (nausea) and miralax (constipation). Besides the supplements suggested from Dr. Wallace, Mark is also taking a homeopathic approach (based on studies from Dr. Banerji) and taking Ruta GR.6C, Calcarea Phos and Cuprum Metallicum...the combo has several positive stories backing it on the brain tumor sites and chats.

What's next:
06/12/06 \u2013 blood draw (to check levels for temodar)
?? DOPA PET SCAN
?? evaluation with neuro-psychologist (Dr. Ingalls)

06/28/06 \u2013 blood draw
07/?? MRI, meeting at UCLA
08/30/06 \u2013 blood draw
10/25/06 \u2013 blood draw
01/10/07 \u2013 blood draw
02/21/07 \u2013 blood draw
04/25/07 \u2013 blood draw

latest scan

2006-05-09T10:39:00.000-07:00

Yesterday we met with Dr. Lai (part of Dr. Claughsey's team) at UCLA.
Mark has been complaining of increased seizure activity where he gets the euphoric feeling accompanied by a little loss of control on the right side of the body. He says that he often feels "right on the edge" of getting a seizure. He had an MRI in the morning and when we all reviewed it, the scan is still looking good and the cavity is still shrinking and the questionable spot seems to be getting smaller as well. There's nothing in the scan that explains the seizure activity and it could be due to the brain still shifting around to try and fill the cavity. To help with the seizures, they do not want to increase his seizure medication (Keppra) over 3000mg which is his current dosage. We could leave it alone, or add on a new seizure medication (topomax?, tegretal?, neurontin?). We chose to try neurontin as a supplement to keppra to see if it helps the way Mark is feeling. Mark feels like more rest may help as well, if he gets 8 hours he generally feels pretty solid so he will also try to make sure he gets to bed early. There don't seem to be any side effects from vaccine or no noticeable changes. The doctor seemed eager to get Mark back on Temodar and we will be consulting with Dr. Liau on Wednesday to determine when he can start up again. We will get another MRI scan in a month. Vericose vein concerns don't seem to be an issue, as a follow-up, we did have an xray and ultrasound and there didn't appear to be any complications or clots and they actually claimed that Mark "had really nice veins"! We also talked about seeing a neuro-psychologist and will be in contact with Dr. Tom Colita (one of the speakers at the brain tumor conference).

What's next:

05/08/06 - MRI and meeting with Cloughsey
05/10/06 - 2nd injection of dendritic cell vaccine
05/24/06 - last injection of dendritic cell vaccine
06/07/06 - follow-up blood work
06/07/06 - tentative MRI & visit with Cloughsey

first injection

2006-05-02T08:30:00.000-07:00

Mark had his first injection of the vaccine this past Friday; however, nothing much to report...he said it just felt like a shot! He had to wait in the office for about 2 hours to make sure there wasn't any reaction and we are continuing to watch him at home for any rashes or anything out of the ordinary.

About a year or so ago, Mark noticed some veins that seem to have collected on his knee. They look like vericose veins but we're not sure and they don't seem to bother him. They are about the size of udon noodles and looking at pictures on the web, it looks like it is vericose veins. We had a friend recently have a complication relating to something similar, so now we're concerned about these veins. We're scheduling an appointment to have these looked at and all of our doctors have been alerted.

Coming up:

05/08/06 - MRI and meeting with Cloughsey
05/10/06 - 2nd injection of dendritic cell vaccine
05/24/06 - last injection of dendritic cell vaccine

vaccine update

2006-04-18T15:03:00.000-07:00

Mark had his vein assessment and screening last week and all went well..nice veins!
Mark completed leukepheresis on Monday.
It took 3 hours for him to have his blood drawn, separated into white and red cells, then put the red ones back in his body.
They are now culturing the vaccine, which they will inject next Friday.
He also has a baseline blood test to take this Friday.
All looks good so far.

We did have a bit of increased seizure activitiy over the past few weeks. We've upped the dosage on Keppra to 3000mg which seems to help. Mark had a bit of trouble with double vision when we upped the dosage, but the doctors said his body would adapt and things definitely seem better now.

He is still going strong and has been biking, lifting light weights and playing ultimate frisbee. He's probably in the best shape of his life right now and is totally ripped! :)

What's next:
04/28/06 - 1st injection of dendritic cell vaccine
05/08/06 - MRI and meeting with Cloughsey
05/10/06 - 2nd injection of dendritic cell vaccine
05/24/06 - last injection of dendritic cell vaccine

recent MRI results

2006-04-12T06:18:00.000-07:00

We had another MRI on 4/10 as a follow-up to the last one 4 weeks ago. Everything looks good on the scan. The area in question is smaller, but still not exactly sure what it is. But getting smaller is a good sign. We will have another MRI on 5/8 to check on it again.

Mark did have a seizure (60min+) on 4/1 and felt euphoria and right side not feeling quite right and a few smaller ones in the prior weeks. Some of these were because seizure medicine wasn't being taken as directed. Doctor didn't feel that we needed to up the dose unless seizures continue.

Questions
-----------
Got anything going on researching estrogen receptors? Not for glioblastoma.

What's next
------------
04/12/06 - screening and vein assesment
04/15/06 - caregiver conference
04/17/06 - leukaphereses
04/28/06 - 1st injection of dendritic cell vaccine

6th Annual Brain Tumor Conference: GBM Tumors

2006-04-03T08:58:00.001-07:00

GBM Tumors
Dr. Cloughsey

Surgery
- no randomized data regarding extend of resection
- retrospective studies found extent of resection positively correlates with survival
Radiation Therapy
- external beam radiotherapy : fractionated schedule, brain volume to be radiated, radio sensitizers
- brachytherapy (radioactive seeds): location and size limits, selection bias (only valid on certain types of tumors)
- radiosurgery: local treatment for a widespread process?
- Current standard is 60 Gy, 3D: conformal
- Randomized study of brachytherapy - no difference in survival of group that didn't get it (not offered for malignant gliomas now)
- Trial with radiosurgery (gamma knife, x knife, etc) showed no benefit found (RTOG-9305) not used for GBM in upfront setting
- Surgery is the best thing to do, radiation therapy (60Gy fractionated)
Chemotherapy
- Temodar first chemo that showed a benefit in survival rate
- Anaplastic Astrocytoma doesn't necessarily get the same treatment as GBM
- If Methylated MGMT present, indicates that Temodar will work better
- Temodar currently not used longer than 2 years
Recurrence
- treatment options: surgery (mass effect pressure relief or to determine if radiation necrosis vs. tumor or to participate in trial for recurrent), radiation therapy (risky if in place already radiated, possible to go over tolerance of normal brain, could cause necrosis, mass effect or swelling), chemo therapies (20% benefit of patients being stable after 6 months)
- lower grade tumors can come back as higher grade tumors, grade IV tumors come back as grade IV but can be more aggressive than before
- 85% of the time, comes back within 2-3 cm of original tumor

6th Annual Brain Tumor Conference: Nutrition and Brain Tumors

2006-04-03T08:58:00.000-07:00

Nutrition and Brain Tumors
Carolyn Katzin, Certified Nutrition Specialist

www.cancernutrion.com

Cancer is a molecular diseases. Mistakes in the cells are not corrected. Cancer cell has lost its orientation.

What can I do to improve my outcome?
- Add the 3 P's to enhance your health
- protein - whey, egg white, cottage cheese, etc.
o 15 grams of protein in about 4 ounces
o Eggs, fish, chicken, turkey, lean meat
o Tofu and beans
o Pre-digested or hydrolyzed protein (milk protein as whey)
o Almond or peanut butter, nuts, seeds
- phospholipids - lecithin, phosphatidyl choline, inositol and phosphatidyl serine
o active forms of fat
o key components of cell membranes
o essential for brain health
o oils and fats: recommended fatty acid balance (omega 6:3 of approx 4 to 1)
- phytonutrients - blueberries, spirulina, blue/green foods
o help to make sure cells are in good health
o ORAC scores in order of most to least: blueberry, blackberry, garlic, kale, strawberry, spinach, brussel sprouts, plum, broccoli, beet, red grape, kiwi, pink grapefruit
- work with the 3 Anti's
- Anti-carcinogens: a chemical that reduces cancer processes
o Curry powder (combo of turmeric, cumin and other spices)
o Grapefruit and other citrus fruits (naringinin and limonene)
o Green tea (EGCG and other natural ingredients)
o Pomegranates (especially the oil from the seeds)
o Brazil nuts (excellent source of selenium)
o Tomatoes (source of lycopene)
o saffron
- Antioxidants: a chemical that reduces oxidation (eat them, not in supplements)
- anti-inflammatories: a chemical that reduces inflammation (redness, heat swelling)
o omega 3 fatty acids
o flaxseed, borage and blackcurrant seed oils
o natural salicylates: turmeric, rosemary, thyme, apricot, broccoli
o bioflavonoids: from citrus
o sugar and inflammation
* inflammation and sugar consumption may be linked
* Insulin-like Growth Factor is a genetic marker found to increase in high glucose diet; brain tumors are dependent on glucose
* Calorie restriction also lowers IGF-1
* Inflammatory reactions, wheat sensitivity - benefit from avoiding gluten
* Glucose uptake is measured by glycemic index and load
* Sucrose (one molecule each of glucose and fructose combined)
* Starch is composed of long chains of glucose
Fatigue - drink green tea, dark chocolate
Regular physical activity
Protein, iron, zinc, B vitamins and C
Avoid caffeine and stimulants
Drink green tea (not after 4pm)
Nausea - ginger, whole grain crackers, melba toast
Constipation - prune juice, dried prunes,figs,apricots,wheat bran, avoid apple sauce
Headache - avoid caffeine, chocolate, cheese and tyrmine foods (anchovies, gravies)
Weight loss - choose avocado, high calorie smoothies
Tendency to bleed easily - oranges, lemons, limes
Vision loss - dark green leafy veggies
Enhance your natural immunity
- mushroom extract or just plain white button mushrooms
The promise of nutigenomics
- individual genetic variations help tailor and personalize your recommendations

supplements
- alpha lipoic acid
- NAC
- Coenzyme Q10
- Green tea extract
Are some supplements harmful or of benefit?
- avoid mega-doses (more than twice RDI or acceptable intake) of any nutrient
- reduce supplemental antioxidants during treatment
Steroids and Weight
- reduce salt and sodium
- increase potassium eating more vegetables and fruits
- lower simple sugar; choose foods with a low glycemic index/load
- stay active
- drink lots of water

Nutrition and Inflammation
Beneficial foods
Specific issues related to treatment
Nutigenomics
- new field of nutrition and genetic expression
- The DNA Diet a new way of personalizing dietary recommendations
- Valuable tool for emphasizing which foods are most important for you

www.thednadiet.com
www.carolnkatzin.com

6th Annual Brain Tumor Conference: Support for the Caregiver

2006-04-03T08:57:00.000-07:00

Support for the Caregiver
Caregiver often neglectful of themselves
Challenging to balance work, caregiver responsibilities, own needs
Difficulty concentrating, distracted, tired, lack of sleep, guilty about doing things for yourself, guilty not doing enough, frustration/anger, tearful, lonely, overwhelmed, feeling bad about not having these thoughts/feelings
Need to discuss your feelings with family, friends, church, groups
Make time for yourself, if not, can lead to depression
Take care of your own health: sleep, diet, exercise
Delegate: hire people
LA Caregiver Resource Center
- will come to your home to see how accessible your home is
- ask questions to caregivers
- give depression test (60% caregivers are clinically depressed)
- offers counseling to cope with what is going on
- support groups
- legal consultations
- respite funds
- link to care on website (can ask doctor, lawyer, or caregiver)
- caregiver retreats
- classes
Maintain sense of humor at all times

6th Annual Brain Tumor Conference: Effects of Brain Tumors on Cognition, Mood and Behavior

2006-04-03T08:56:00.000-07:00

The Effects of Brain Tumors on Cognition, Mood and Behavior
Dr. Thomas A. Kaleita, Neuropsychologist @ Dept. of Psychiatry UCLA

Symptoms
Fatigue and decreased stamina
Excessive sleepiness (often sleep 8+ hours)
Decreased alertness
Neurobehavioral dysfunction
- Attention
o Foundation for higher cortical functions
o Deficits appear as impaired ability regardless of intention
o Deficits can affect memory, language, executive functions, motor coordination and behavior
o Primary brain ability affected by malignant diseases and treatments
o Types of attention
* Focused
* Sustained (concentration over a period of time)
* Divided
* shifting
- memory
o differentiated theoretically from attention, but difficult at times to separate in observed behaviors
o capacity to retain info and utilize it for adaptive purposes
o verbal and nonverbal domains
o type and severity of deficits highly dependent on age
o memory abilities most often affect by tumor/treatment
* word finding/naming
* working memory (remembering phone numbers long enough to use it)
* retention of new info
* episodic memory (what happened earlier in the day, yesterday)
- psychomotor speed (how fast brain processes information)
o often underlies attentional deficits
o may interact with physical impairments (i.e. visual perceptual difficulties)
o visual spatial and visual motor activities most commonly affected by deficits
o neurologic impairment differentiated from developmental or aging effects
o slowing a primary symptom of depression
* major depressive disorder
* 3% in US population
* 4-9% in studies of cancer patients
* 28% in brain tumor patients
* symptoms: major depression DSM IV
* sleep disorder
o difficulty falling asleep 52%
o continuity disturbance 41%
o early morning awakening 32%
o Modafinil (Provigil) - help alertness
* FDA-approved for narcolepsy, shift changes in employment and other sleep disorders
* Used to treat fatigue in multiple sclerosis
* Used to maintain performance by armed forces under sleep deprivation conditions
* Side effects: possible headache, nausea, dizziness, may have reaction with Dilantin
* concentration problem
* motor slowing
* weight change
* energy loss
* * sadness
* * diminished interest in activities
* guilt
* death ruminations
- other brain abilities - frontal, temporal, parietal, ,occipital, hypothalamic/pituitary regions

6th Annual Brain Tumor Conference: Alternative Medicine Approaches

2006-04-03T08:55:00.001-07:00

Mary Hardy - trained as an intern
She found that what she was learning wasn't sufficient to give patients all that they needed. Saw the power of traditional Chinese medicinesaw a man have a brain tumor operation under acupuncture only. Think about how you use your supplements. During radiation, you often lose muscle, lowering immune system and have difficulty exercising. Non restorative sleep increases your insulin resistance that can promote cancer.
Diet
Typical American diet is high in fat (wrong kind of fats derived from animals not plants/fish) which increases inflammation. Omega 3s (plant/fish) are what you want and limit omega 6s (animal). Many diseases are based on inflammation (i.e. cancer). Need to plan for a long future, decrease amount of animal protein in your diet. Fish in general tend to have more omega 3s but need to be careful about mercury contamination. Farm salmon is fatty, choose wild. Soy is a great protein substitute. Whey protein is a complete protein, amino acids and easy to digest, glutamine supportive for immune system. Omega 3 fatty acids are an important kind of supplement, it is a good fat that changes the ratio to help body decrease inflammation. Fish oil has EPA and DHA, you need a lot of unconcentrated amounts (~6g) to get enough omega 3. Vegetables have phytochemicals that help your liver process, regulate genetic function that can decrease rate of tumor growth/blood vessels, but they are tough to clean and cook. Juicing is an easy way to get your vegetables in as well as soups. The way you cook food can put carcinogens in your food (i.e. frying), grilling is good, but avoid the charred parts, be careful of smoked meats, steam/bake/broil best.

Meditation Therapies
Put your body into a physical state of restoration. Stress can break down the body. You want to be able to trigger the restorative part of the body that slows down breathing and relaxes you. Sitting meditation or moving meditation, tapes, etc. Basically, all of these techniques use your breath for relaxation. Regulate your breathing and your mind.

Supplements
Reduce side effects of therapy, reduce oxidative load on body, support immune system. Need support for energy and immune system. Traditional Chinese medicine has several parts: herbs, acupuncture.

6th Annual Brain Tumor Conference: Experimental Therapies

2006-04-03T08:55:00.000-07:00

Experimental approaches in the Treatment of Malignant Gliomas
Best Available Care
Advantages: known benefit, well described side effects
Disadvantages: known benefit
Experimental
- novel mechanism of action, hope, expands knowledge
Disadvantages: phase 1 study not likely to provide a benefit, trying to find dose limit toxicity, unknown side effects
Goals of phase 1 studies: define dose (max tolerated dose vs. biologically effective dose); define toxicities; determine benefits; no controls (no placebo group)
Phase 2 (dosage set): define effect against tumor at set dose, define side effects, may use historical control vs. no control
Phase 3: define benefits against standard care (at least two arms -standard or experimental); benefits: shrinkage of tumor; survival; quality of life.
Informed Consent: defines the study in detail; defines the potential side effects; the cost to the patient; defines your rights; defines your physicians interests
When we enter experimental approaches, there a group of drugs called small molecular inhibitors. These drugs effected by liver metabolism. Anti seizure medicines that activate the liver often prevent you from participating in certain drug trials.
Try to define what is the biological active dose. Go through initial treatment at some point may have recurrence. Instead of going straight to surgery, we try an experimental drug then do surgery. When we get tumor sample, we can test how much of drug in tumor and if it blocked any pathways. This helps us to determine dosage for that patient in the future.
Cytostatic agents plus Temodar for recurrent or progressive GBM. Determine effectiveness by 6 month progression free survival.
Experimental approaches in neuro-oncology
- radiation
Sensitizers: GD TEX; ways to increase oxygen(RSR 13, Bovine hemoglobin); radio-labeled antibody (anti-tenasin, chlorotoxin, scorpion venom);Avastin to increase oxygen; AQ4N
Protection: stem cell research; growth factors
- Convection based delivery: conjugated proteins, chemotherapy Made proteins that match receptors on the tumor and not normal brain and gets pulled into the tumor to kill the cancer cell (put in with catheters) TP-38
- Gene/Viral Therapy: HSV tk (herpes - not so effective in humans, delivery impaired possibly by our own immune system); Oncolytic Virus - leads to activation of viruses to help kill the cancer cells (Onyx 15, Reovirus, NewCastle)
- Immune therapy (your own body helps fight tumor): Dendritic cell; antisense; TIL; LAK
- Focal Molecular Therapy: Receptor; cell cycle; signal transduction; angiogenesis
- combinational therapy: chemo/biologic, etc.
Combination Therapy from NABTC
Tarceva CCI-779
Sorafinib and R115777
Sorafinib and Tarceva
Sorafinib and CCI-779

ABC2 Clinical Trials
Avastin vs. Avastin CPT-11
Rad001

A lot of trials don't make it to phase 3 because the can't show that they are better than standard treatment (20% progression free for 6 months).
--
UCLA Database project
Approach
- consented patient
- tissue samples
- clinical data
- imaging
- genomic
- gene expression
- protein
- cell lines

Created a computer environment where clinical & research needs are equally served. Software to help: mobile hand helds, PC, research edition to take data out of lab info. Real-time data screening to apply filters to data center to customize which data sets to return. Once results are returned, users are able to customize what visualization options to view the data set in. The data being gathered will help to determine similarities among patients and their treatments to help get data that may increase individualized therapies.

6th Annual Brain Tumor Conference: Pathology

2006-04-03T08:54:00.000-07:00

Paul Mishel - pathologist
Neuropathology of brain tumors.
We help establish the diagnosis on biopsies done at UCLA and other institutions.
We work with our colleagues in the tumor board. He examines the tumors under the microscope and comes up with a diagnosis and is also involved in research. We try to figure out how to get the right drug to the right patient. Provide preliminary diagnosis at time of surgery - intraoperative frozen section. They identify the type and grade of tumor. We provide molecular information that may help better target patients for treatments. Surgeon removes the tumor, neuropathologist makes intraoperative diagnoses at time of surgery then final diagnosis made later (type & grade), team decides best theraputic approach. What to we look for. Is it a tumor? Does it arise from the brain or a metastasis. Tumor type tells us about the probable cell origin (how it looks and proteins it expresses). Conveys prognostic information and general therapeutic information. The grade tells us how biologically aggressive the tumor is likely to be, grade is based on the presence of certain characteristic microscopic features. Is it a tumor? Come from brain or elsewhere? Cells in primary tumor kind of cannonball shape, primaries have similar cells to the brain itself. Gliomas: pilocytic astrocytomas grade 1 less common, most are astrocytomas 1-4 and oligodendrogliomas, ependymomas, rarely are neuronal tumors, lymphomas, hemangioblastoma (unknown origin). Skull based: meningiomas, pituitary tumors, rare. Gliomas tumors arising from the supporting cells of the brain. Astrocytes - astrocytomas, oligodendrocoytes (cells that sheath nerves of brain - oligodendrogliomas, ependyma- ependymomas. Astrocytomas : indolent (not invasive) but most of them are infiltrating. These are graded on their biological aggressiveness. Most frequent types of glioma, infiltrative nature, spectrum from low grade to high. Grade determined by examining features: high cellularity and cellular atypia, mitotic activity (proliferation rate ) , vascular proliferation, necrosis. Different grades have different age distributions: grade 2 30-40, Oligodendroglioma - another common glioma: rounded cells fried egg appearance, patternless sheets, they are graded by features as well similar to gliomas. Meningiomas: usually press on but do not invade brain. Arise from covering of brain (durra), they can be scooped out for the most part. Small subset have a more aggressive appearance. Current grading systems: useful for diagnosis and prognosis but there are shortcomings: morphologically identical tumors may behave very differently, does not yet let us individualize therapy. The Tolstoy metaphor: All happy families are alike: each unhappy family is unhappy in its own way. The highly regulated molecular events that are crucial for normal development and function are very similar between individuals. In cancer, genetic and epigenetic alterations lead to highly complex individual tumors. The challenge: find consistencies that can be therapeutically regulated
Traditional approach to cancer diagnosis:
The genomic revolution is transforming clinical medicine. Instead of the current model of population -based risk assessment and empirical treatment. We will move to predictive individualized care based on molecular classification and targeted therapy. Targeted molecular therapy trying to find Achilles heal of cancer. Exploits gene defects and signaling abnormalities specific to cancer cells. Holds the promise of non-toxic treatments. Already being for other types of cancer. The success of this approach will depend on targeting it to the right subset of GBM patients.

Glivec for leukemia, doesn't make you sick but suppresses cancer.
Cancers are a very mixed group, some are susceptible to certain drugs and other not. Targeted inhibitors work in some GBM patients - who are they? Some patients show a clear response. A clinical trial will likely fail to show efficacy if the drug is not targeted to the right patients Tumor should be targeted not on the basis of morphology, but on pathway deregulation. Need to develop ways to identify which patients are likely to benefit. How do go from a patient's biopsy to right drug? Pathway signatures are beginning to be used to identify which individual patient may benefit most from a particular drug. In vivo analysis of signaling pathways may tell us how to individualize therapy for patients. We found a way to examine proteins that are turned on when they should be turned off in GBM patients. We can identify if they are activated in certain patients. EGFR is an attractive target in GBM: frequently amplified, over expressed or mutated. Response limited to a subset: only 10-20% respond to EGFR inhibitors. Molecular determinants of response in GBM unknown. 11/10/05 article in NE Journal of Medicine: Molecular Determinants of the Response of Glioblastoms to EGFR Kinase Inhibitors Asked if more of the gene target made person more sensitive to drug, answer was no. There are some proteins that we thought might interact with each other and we found that when both proteins present in tumor cells, patient 50% more likely to respond to Tarceva. (Mark's tumor did not express these two proteins, so Tarceva not a good choice.) In the process of doing clinical testing for these proteins. Understanding why some one doesn't respond is almost as important as trying to figure out why some one does. Malignant glioma patients can benefit from EGFT kinase inhibitor therapy Summary:
- we work as part of the team
- we diagnosis the tumor
- info about the presumed cell of origin its likely life of biological aggressiveness provides a diagnosis and provides basic info about the prognosis and treatment
- we work closely with the neuro-oncologists, surgeons and radiation oncologists to help optimize a treatment plan
- we are at a new and hopeful phase in which we may help to individualize therapy and help determine which therapy is likely to benefit each patient
- our group at UCLA is moving forward with the developing such targeted molecular approaches

Will the pathway signature work in low grade settings? Probably yes, but what we know comes from high grade tumors.

Diagnosis of cancer is based on what it looks like under the microscope. There are some cases where the pathologist can't make a definitive diagnosis because there are not enough cells and trouble getting them without harming the patient.

Cells go about their business through a series of signals. One protein enzymatically interacts with another protein and so on to activate a certain function in a cell. These are called pathways. In cancer, these pathways get distorted so cell can't do what it is intended to do.

Blood brain barrier when normally functioning prevents things from getting into the brain. In brain cancer, the barrier becomes leaky so things can get in. Sometimes can exclude some cancer therapies. Most inhibitors appear to be getting in, in sufficient doses.

6th Annual Brain Tumor Conference: Radio Surgery

2006-04-03T08:53:00.000-07:00

Dr. DeSalles - stereotactic radio surgeon
New treatments for brain tumors become widely known in this medical community. He is a neurosurgeon. He believes radiation can help preserve the brain while getting at the tumor. He helps to determine if you have to only radiate the tumor, part of the brain or the whole brain.
Techniques of Stereotactic Radiation
- proton beam (Loma Linda)
- gamma knife - have to give little shots, multiple isocenters
- linac scalpel
- varia 600SR X-Knife
- Cyber Knife (Hoag, USC)
- Novalis - Shaped Beam (UCLA) single is center (conformal radio surgery)
Advantage of Fractions of Radiation (can kill cells in different cycles, have to be done in 30+ session)
Cell cycle advantage more vulnerable during mitosis
Treatment of Brain Tumors:
Surgery
Radiotherapy
Chemotherapy
Immunotherapy

Radiation effect in gliomas and metastases
If tumor is localized you want to focus radiation on it. If malignant glioma with fingers of cells, stereotactic irradiation not best solution. In this case, you would have to radiate a larger area of the brain. With metastatic, we usually have to radiate the whole brain. One singe shot of radiation at high dose is very effective, but so is fractional.

Particle of radiation hits DNA, so cell can no longer divide. It doesn't make tumor vanish, but become sterile overtime and can't reproduce so tumor should decrease. If tumor growing fast, should react quickly to radiation.
If we give fractions of radiation, then we can achieve very high dosage. Novalis can shape the beam to match tumor size. Good for when full resection can't be done or when large areas of tumor can't be radiated (i.e. children).
GBM Results up to date:
Surgery + conventional radiation 9-12 mo survival,
surgery +RT+Temodar 14-19 mo,
Recurrence limited options: chemotherapy: most frequent 5 mo (median)
SRT: 8mo
SRS: 10-11mo

UCLA Approach to GBM
Tumor board
Maximal Resection
Conventional Radiation Therapy (SRT boost)
Chemo: Temodar
Immunotherapy
For recurrent tumors: sterotactic radiotherapy, radio surgery, reoperation, salvage chemo
Clinical trials: vaccine, other chemo agents
GBM
Age is important (may not do surgery in old patients and use sterotactic instead, young patients surgery is 1st option)
When build up amount of radiation (toxicity 90 Gy) we never give more than 60gy. More radiation, you live more, but you can't get the dose too high.
One difficulty is finding where all of tumor is. We have MRI scans, but can't see where invisible cells are, we use PET and MRISpec to show more pathways that we thing we know where the infiltrating tumor cells are.

SRT for Recurrent Gliomas, survival depends on grade of tumor, has marginal importance in the treatment of recurrent, because GBM is a diffused disease. Very selected cases may be helped.

Gliomas are primary tumors (brain cells degenerate to tumor and don't go beyond the brain but can be in spinal cord). Metastases come to brain from other places, blood born which is why the brain gets a lot of metastases. Metastatic tumors don't send out the fingers like GBM, but recur because they move in the blood. Radio surgery first, focused radiation, surgery, fractionated and sometimes whole brain needs radiation. Untreated 1.2 mo, steroids only 2mo, WBRT 4 mo, surgery + WBRT 7-16mo, radio surgery 7-14 months. Age important, where tumor comes from and neurological grade. Treatment: radio surgery then chemo, immunotherapy (can use sterotactic if no other tumor exists) If lesion bigger than 3cm, you start to get pressure in brain and symptoms and tumor needs removed. If lesion smaller than 3cm and no symptoms can use one shot radiation for single lesion. Have to use whole brain radiation when there are multiple lesions throughout the brain, then chemo then surgery. Melanoma, kidney cancer, tissue cancer are radio resistant. Brest/lung can give radiation and they tend to go away. Metastases is usually circular, homogeneity is not an issue, single dose is the choice, 20Gy=110Gy in conventional fractions.

For recurrence: Fraction radiation, resect then radiate tumor bed. If patient has metastatic brain tumor, you have to take care of tumor elsewhere first.

Avoid whole brain radiation. Can make person age several years because brain shrinks. You can usually avoid doing whole brain in metastatic cases. If you do have tumors elsewhere, you should get MRIs to watch for brain tumors and catch them when they are small. Radio surgery is about 25% more costs-effective than surgery and radiation therapy for treatment of brain metastases.

UCLA approach to brain metastases
Surgery if mass effect (stereostactic fractionation or single dose for tumor cavity)
Radio surgery for up to four lesions
Repeat radio surgery if new
Lesion reaches CSF or innumerous lesions (whole brain radiation)
Palliative radio surgery as lesions grow and compromise neurological status
Rarely people die of brain metastases

Radio surgery is treatment of choice for treatment of brain metastases.

6th Annual Brain Tumor Conference: Basic Brain Tumor Information

2006-04-03T08:50:00.000-07:00

Dr. Cloughsey
Primary Brain Tumors: Incidence
Close to 40,000 new cases in 2002
60% are high grade = poor prognosis
50% increase in incidence since 1984
Gliomas can have devastating function
People over 65 had highest increase in brain tumors

Molecular and genetic considerations
Causes -
Unknown
(small percentage) Increased incidence in farmers, ham radio operators, nuclear industry worker, petroleum field workers and those exposed to radiation to central nervous system
Hot issues: aspartame and cellular phones (unknown risk - no supportive data exist - we think the answer is no)
5% related to inherited genetic condition
19% report family incidence of cancer
Molecular Biology -
DNA stored in every cell and gets replicated when cells are made (kind of like blueprint)
RNA only made if cells wants to make something for that cell. Small percentage of DNA used to make RNA. Acts as an assembly line, adds amino acid into complex string that turns into a protein that goes in cell and interacts with other cells (this is where you get the cells that are made for specific functions, heart cell, brain cell, etc.)
In any tumor, there are abnormalities that occur in the DNA, mutation or loss in gene which can work on the protein and when activated to create new cells, it gets knocked out and then you have reproducing cells with abnormality. This can happen in any kind if cell brain, breast, etc.
Brain cancer is molecularly heterogeneous (they might look the same under the microscope, but they are different in behavior)
Primary brain tumors are classified according to the cells of origin
Malignancy determined by cellular characteristics
Primary gliomas do not spread outside of the central nervous system (except in rare cases)
- astrocytoma (Grade 2)
- anaplastic astrocytoma (grade 3)
- glioblastoma multiforme (grade 4)
features to determine grading:
pleomorphism
mitosis - cells actively dividing
endothelial proliferation (new blood cells forming)
necrosis (cell death)

astrocytoma can accumulate abnormalities and increase in grades
some tumors right out of the gate are grade 4
features on imaging give insight as well, Mark's tumor looks like it was the type that has been around for a long time and eventually changed grade over time vs. one that was GBM right out of the gate, because it was well defined instead of diffused. Typically, Mark's kind has better survival rate.

tumors look the same but have very different expression of genes and different survival

we can select antibodies that will look for specific protein and see if exists or not in tumor cells (PTEN and other types of proteins), we can see if metabolics pathway has been activated or not and we can characterize which pathways have been activated that can help us choose therapy. There are agents that can block certain pathways if activated or driving tumor.

Proneural, proliferation, met

How do we individualize therapy? This is what we're actively working on at UCLA.

Signs and symptoms
Headaches most common initial system
Seizures about ½ of patients have some type of seizure
Mental changes - memory, speech and communication
Nausea and vomiting; drowsiness, vision problems, blurred or double vision (usually cause by increased intracranial pressure that can be due to tumor's growth within skull, blockage of cerebral spinal fluid that flows through ventricular system or edema of the brain around the tumor (fluid leaking outside of contrast enhancing area)
Brain stem tumor - clumsiness, swallowing, double vision, hearing loss, anything effecting cranial nerves, headache on awakening
Cerebral hemisphere tumor
- frontal lobe tumor (unilateral paralysis, memory, impaired judgment, personality, mental changes)
- occipital lobe tumor - blindness in one visual field

schwannoma -
meningioma - growing off base of skull, don't change that rapidly, 20% of all primary brain tumors, slow growing, arachnoidal cells,
medulloblastoma - typically in children, in 4th ventricle, in cerebellum, doesn't spread outside of CNS, needs spine radiation as well as brain
astrocytoma/glioma - can grow rapidly,

MRIs can detect better than CT scans

New PET imaging - typically use glucose as a tracer, now trying thymidine or dopa(goes past blood brain barrier and goes into any area that is tumor, can show low grade tumors too, good for after surgery because you can identify tumor activity vs. scarring) as tracers now that reflect cell proliferation (rapidly dividing) Usually only available for patients on clinical trials.

What are you learning from GBM survivors? We're big progression if seeing if molecular makeup helps determine survival.
MRSpec - can get lots of false reads because of volume averaging

Radiation therapy
Conformal
Focused: seeds, sterotactic, proton
Sensitizers - not a confirmed effective sensitizer for brain radiation

30% progression
27% stable disease
43% shrinkage of tumor

Chemotherapies effective for malignant gliomas?
Try to cause abnormality in DNA so it can't replicate
In the past, chemo didn't seem to have much effect in GBM; however, Temodar seemed to have some radiation sensitizer effect and studies now show the Temodar/radiation combo has a noticeable improvement over radiation alone. (26% increase in 2year survival)
Different tumors respond differently to different agents. The most effective approved chemotherapies are CARBO(alkylating/cross linking), BCNU(alkylating agent), CPT-11(topoisomerase I inhibitor), TEMODAR(alkylating/methylating), PCV combination chemotherapy, VP-16(topo
Unfortunately, we don't yet have good ways of knowing which ones will work for the different tumors and have to do trial/error most of the times.
Biologic Agents
Tamoxifen, Accutane, b-interferon,

Cytostatic agents plus Temozolomide
Saw some significance with marinated, but couldn't be repeated in successive studies, many times there hasn't been a significant benefit overall

Vascular endothelial growth factor
Avastin/cpt11 (approved for colon cancer, breast) Avastin side effects could be local hemorrhage (1 in 30) which is why they are concerned about using it in the brain; high blood pressure, proteinuria; cost - many health plans don't pay because it isn't approved for GBM (could be $5-10 thousand dollars every 2 weeks), Duke is doing a trial for this and UCLA is managing about 65 patients on this trial (our friend Tom is trying out this new chemo combo), given every 2 weeks. Preliminary data shows 51% have shrinkage of recurrent GBM

Molecular evaluations on tumors
Not always that reliable, so it makes it difficult to provide guidance. This is the type of information that will be coming soon to help guide therapy. Molecular biology has helped in oligodendroglioma tumors because they could see if there were big chunks of genes missing in 1st chromosome that patients did better when this chunk was gone, and those with it present didn't do as well. Helps with prognostic information, but not treatment. We know that genes are missing, but we don't know which ones - but some how important that it is missing? Not useful enough in clinic to determine treatment. We're trying to find similar data in GBM patients to find out what chemotherapies will work better than others for specific patients. Findings that ones with methylated MGMT did better than patients whose gene is not methylated, but this hasn't been validated.

How do you decide which inhibitor to give to a GBM patient? There isn't just one thing to target. There could be several pathways that are driving the tumor to grow. We try EGFR, mTor or others as prohibitors, but not sure if we're going to get an effect. Studies show that some patients do have positive results in a minority of patients. Tested EGFR/PTEN molecular features of tumors and found that when both expressed, it identifies the responders and could help identify if you should be using growth factor receptor or not. (Mark's tumor didn't show these, so that we know Tarceva probably wouldn't be a good prohibitor for him).

We are getting closer to individualized therapies. We are beginning to identify subgroups.

6th Annual Brain Tumor Conference: Neurosurgery

2006-04-03T08:49:00.000-07:00

Dr. Donald P. Becker - former chief of neurosurgery and has battled brain cancer himself, he's 70 years old (looks like 55!)
Elementary talk on what a neurosurgeon does. A neurosurgeon's role in treating benign or low grade gliomas, they remove it. In higher grade tumors, they are to reduce as much pressure as possible by removing as much of mass as possible and getting tissue for other research and trials. He would often take x-rays home night before surgery to really prepare himself and know as much possible, so that he assured him self he was doing the best that he could. You want your surgeon to be careful, attentive, have patience and not overloaded. Technology has really advanced the field. Back in the day, they didn't have magnification and the lighting was terrible. Now the magnification is incredible and we have headlights over our head, sometimes use operating microscope with light coming right through the lens. Usually have an MR scan done in advance to all you to have computer with images in the operating room. We register the computer pictures to the patient's head that is fixed and can use the screen during surgery to verify tumor location. Showed us pictures of a metastatic tumor removal. Patient's head fixed and shave area around where incision to be made and mark area. They make a hole in the skull to identify the durra mater underneath, place a small saw underneath and cut out the marked area of the skull with an angle (like when you cut a pumpkin lid) then wrap in gauge and place in sterile solution. They then open the durra mater to expose the brain (gyrus - hills and valleys of the brain). Tumor different color than brain tissue. Metastatic tumors can often come out completely, like Lance Armstrong. Try to take at tumor as a whole, so cells don't spread, then we put the skull back with titanium plates and screws using 3 point fixation, durra mater held up with a suture. A little talk about anatomy: have to be cognizant of where arteries are that feed the brain, cranial nerves responsible for swallowing and sensation of the throat (if you injure those patients have 6month recovery and can't swallow), optic nerves (nerves cross and operate opposite sides of body), olfactory nerves (smell, taste), vessels come off artery and can't be damaged during surgery and could cause stroke of contra lateral weakness, brain divided into frontal, parietal, temporal and occipital Lobes. Central sulcus controls motion, frontal lobes relatively silent. Cerebellum controls coordination. Frontal lobe controls personality. In the center of the brain you have lateral ventricles that hold cerebral spinal fluid, you generate 2 cups a day that helps clean the brain. With and MR scan, you can see all of the anatomy and we can tell where lesion is and if it is near risky areas. All blood vessels are critical and we try to avoid damage, but the brain is covered with veins. Every cardiac pulse, 20% of the blood goes to the brain, so we need to know where all the veins are and where they go to. Thalamus cannot be damaged or patient has weakness or contra lateral paralysis. Showed us pictures of lesionsglioblastoma is the worst kind, grows rapidly and strips its own blood supply and can end up with a hemorrhagic tumor. GBMs can have cysts in them too. As they grow they destroy brain tissue and can distort it and cause problems for the patient and their family. If it grows in the pons (near spinal cord) have trouble with sensation and eye control, but can have success with medical therapy. Metastatic are usually well circumscribed and easy to totally remove. Cranial nerve controls facial movement. Hypothalamus keeps person awake and keeps metabolism in order. When tumor is near eloquent areas, we'll do a functional MRI to test hand movement, speech and tongue movement. Questions: Are brains different from person to person? Each brain is a little different in position of central sulcus, some have larger frontal lobes (usually smart folks), some functional differences as well. If a person learns two languages, the zones for primary language is in a different area than their secondary language (functional MRIs can detect this). Being in an academic research center, we're learning fascinating new things all of the time. Have you ever used gliadel wafers? He has used gliadel wafers, but only in consult with neuro-oncologist. What about low grade astrocytomas? Low grade astrocytomas can be cured if removed properly; however, we can't always remove the whole thing if it might damage the patient's functions.

6th Annual Brain Tumor Conference:

2006-04-03T08:42:00.000-07:00

We spent all day Friday and Saturday (3/31,4/1) at the 6th Annual Brain Tumor Conference at UCLA. It was a great event that filled us with knowledge and solidified our choice to work with the program at UCLA. We also got to meet several other survivors, families and medical professionals. What will come next is A LOT of information. I took notes on everything in case anyone wanted to know what we heard.

Here's just some of the intro information we learned:

In the end, we don't have the answer. We try to educate the best we can and you will help us to make right decisions.

Here's the outline of what was covered:

UCLA's Approach to Brain Tumor Care: Multidisciplinary
Surgery (maximal surgical resection , functional mapping, operative mapping, navigational surgery, operative MRI, utilize tissue)
Pathology (determination of grade, determination of molecular pathway activation)
Radiation therapy (Novalis shaped beam therapy, conformal therapy, experimental), chemo/biologic (individualized care, experimental-NABTC,ABC2,Investigator initiated)
Immunotherapy(dendritic cell therapy, Poly ICLC, IL13)
Radiology (tumor vs. necrosis , MRI, diffusion, MRS, pet ,fdg, flt, dopa), Fatigue (provigil)
Comprehensive care (principal care, psychosocial, education/updates, caregiver support, social work)
www.neurooncology.com

Interesting facts learned:
Turtles are the only creature that is known to not get cancer. Some cultures use ground up turtle in their treatments.

Here's a way to donate directly to the UCLA Neuro oncology department: www.jeanniescure.org

Dr. Liau and the dendritic cell immunotherapy trial

2006-03-23T06:08:00.000-08:00

We met with Dr. Linda Liau to discuss her Phase 2 Dendritic Cell Immunotherapy trial. She was very personable, informative and quite knowledgeable. She was up on many related trials that were being done around the country. Besides being a researcher, she is also a neurosurgeon and is one of the top doctors at UCLA. She looked at Mark's recent mri scans and agreed that they looked fine and that the cavity was getting smaller. She gave us some information about the trial to read and a form of consent to sign.

Here's what we learned about the trial...
Mark would need to be off of temodar for 4 weeks before getting the vaccine. At this point, he would have leukaphereses, which is like giving blood, but just takes the white blood cells and returns the red. They then culture them with some cells from Mark's actual tumor to create an antigen for the tumor. It takes 8-10 days to grow what they need. Vaccine would be every 2 weeks for 3 cycles (total of 6 weeks) then he can go back on temodar. We won't know if we totally qualify for this trial until blood work done because they have to make sure that the immune system is up; however, the mri scan and karnofsky score (100) are good indications that he will qualify. We discussed whether or not to take supplements while waiting to take blood and may be opting to not take anything new before then. There is nothing we can do now until 4 week off of temodar and we will come on 4/17 to gather the blood (leukaphereses) and will have the vaccine injection on 4/26. Since we are getting blood work done already on 4/10 (along with an MRI) Dr. Liau will add on to the order some of the tests that she needs done as well. The injection takes about 10 minutes, but the appointment takes 2 hours (take blood, injection, observation to watch for reaction). The last injection would be on 5/24 and can resume temodar in June cycle.

Questions
----------
What does the vaccine do?
Basically, we create antigen presenting cells that migrate to the t-cells and the t-cells become activated and become "killer t cells" that are all over your body and can help fight off the tumor cells. (Similar to how your body fights a virus.) It is good to do the vaccine now since there is no regrowth and we can start prepping Mark's tcells to fight of any new bad tumor cells.
How long would treatment be? Every 3 months after initial vaccine.

When is the vaccine taken?
It is first given and then they give a boost every 3 months. With the boosts, they do it in between temodar cycles when immune system is at its best (around day 19). For the boosts they continue with temodar and vaccine together but staggered.

How long does it take to create the vaccine?
10 days from day that we draw blood, but we have to wait until the blood has started its recovery from chemo before we can start growing the vaccine.

Should we worry about regrowth during this period?
It is always a concern, we'll be in contact with Dr. Cloughsey to examine MRIs and discuss as needed.

What if there is tumor regrowth while taking the vaccine?
If MRI shows a growth, they usually recommend going back on a chemo. The vaccine is best taken before there is growth which is why we are taking it now. If there is regrowth, it depends on where it grows and what treatment options are available to remove the new tumor. If there is enough growth to require surgery, they will gather new tumor cells and create a new vaccine. If it is just a little growth, they would go back to standard of care (new chemo) and continue with vaccine. If the growth is too much and they are unable to remove it with surgery, the vaccine isn't of much help because the bad cells would be growing too fast for the killer dendritic cells to fight it.

What happens if you run out of tumor to create the vaccine?
Then we stop. The trial is typically written for a year and we usually stop the boosters at this point. We have Mark's cells in cell culture, so they can be used to create more tumor cells if needed. The fresh tumor will eventually run out, but since Dr. Martin (Mark's neurosurgeon) called Dr. Liau while Mark was in surgery, they were able to culture some of the tumor cells from the beginning so that they can continue to grow some and use if needed in the future.

Does insurance cover this?
No, but it is free and is funded by federal grants. It shouldn't cost us anything.

What kind of results have you seen so far with this trial?
75% of people receiving the vaccine have a median 2 year survival rate (could be longer, but the trial isn't that old yet) they do have a 6 year survivor from a previous trial.

Are there any statistics when regrowth is normally seen after resection surgery?
If there is regrowth, it is usually within the first 9 months, but it depends on the individual and healthy individuals (like Mark) sometimes don't see regrowth for a year. Statistics show median survival of 15 months, the goal of the vaccine is to push that out even further.

How long does it take for hair to grow back after radiation?
It depends on each individual and varies for each.

Other Trials
-------------

We read about a DCVax to treat GBM ?
The description of this one sounds identical to what Linda Liau is doing and looks like it is the same thing. It is the same thing! There is a company that is helping to to fund this research and they had to have a fancy name to publicize it.

Dr Hassenbusch, a neuro surgeon at MD Anderson has combined standard treatment and an experimental vaccine when his WBC count is low from the radiation Every month, he takes a large dose of Temodar for five days. Then, when his white blood cell counts hit rock bottom "about 21 days" he gets the vaccine, which recharges the white blood cells. http://www.virtualtrials.com/news3.cfm?item=3437 Do you know about this?
This approach is the same as what Dr. Liau does. At about day 19 when white blood counts are low and your immune system is starting to ramp back up again (where it is at its prime in educating all of the new cells to recognize the tumor) they give the vaccine. The vaccine that they use at MD Anderson is an EGFR-related vaccine, but since Mark's tumor didn't test positive on the EGFR test with Dr. Mischel @ UCLA, he probably wouldn't respond well to this specific vaccine.

Duke is involved whereby T reg depletion is performed prior to commencing vaccine treatment. The claim is that it potentially enhances the effectiveness of the vaccine?
T regs are the population of cells that are suppressive to the immune system. Temodar suppresses all T cells (fighters and suppressors). This trial tries to just suppress the suppressors tcells more than the non-suppressor cells so that there are more fighter cells out there to fight the tumor. This study has mainly only been done in animals, not available for sanctioned humans trials yet.

Duke does have a similar vaccine treatment to Dr. Liau, but the trial is now closed. Dr. John Samson is the main guy doing the similar trials.

There is a vaccine from Pittsburgh Cancer Institute that doesn't rely on tissue from tumor. Based on approach in which antigen peptides are synthesized and ready to use when needed. Once synthesized, vaccine introduced to glioma cells. Based on 4 different tumor antigens commonly found in glioma tumors. What do you know about this?
There is a trial similar to this being done at UCLA, but it hasn't yet started clinical trials. The limitation is that you have to be of a certain HLA type. Your white cells have a type too (similar to red blood type) in order for a tcell to match an antigen, you have to have a certain type of receptor. These peptides have to match one of these types to be recognized by the dendritic cells in order for it to do its job to activate a tcell to fight the tumor. UCLA does something similar when they don't have any live tumor. When using these peptides, you can only synthesize them a certain way and they have to be just right in order for them to do the job. This HLA will be tested on Mark's tumor and we'll find out on our next appointment when we give the blood. If he has the right HLA type, it is possible that he may qualify for a trial like this in the future; however, it is better that we use the actual tumor cells when we can.

Side Note
----------
Dr. Liau is going to be on TV on a show called "Miracle Workers"m April 10th on channel 7 at 10pm. She has also been on Dateline twice. Dr. Black used to be at UCLA and was involved in the same research and now he does exactly the same thing over at Cedar Sinai.

What's Next
--------------
03/19/06 - last day of Temodar (round 2)
03/31/06 - Brain Tumor Conference @ UCLA (all day fri/sat)
04/04/06 - blood work
04/10/06 - MRI, blood work & meeting with Dr. Cloughsey
04/17/06 - leukaphereses
04/26/06 - 1st injection of dendritic cell vaccine

first MRI after standard treatment

2006-03-16T07:32:00.000-08:00

We met up with the doctors at UCLA to go over Mark's first MRI after completing standard radiation/chemo therapy.

Recap: Missed 6 out of 42 doses of temodar during radiation because of low nutrophyl counts. Everything has been going great. Currently off of dilantin, and on 2000mg of kepra as anti-seizure medication. Did have a small seizure (10 minutes) about a week ago, but was low on the dosage of kepra at the time. No headaches. Has been biking and doing well. Did the normal neurologic tests and did fine. No visual problems.

What are the results of today's MRI?
In the axial cuts, it looks like the blood in the cavity is now gone. Just see a thin rim of contrast, but no dense cottony areas, which means it looks pretty good. There is one area that looks a little questionable at the top, but probably how cavity chose to shrink down. The cavity is shrinking. In the coronal view, there is an area that shows the same difference, but it looks like an artifact from the shrinkage of the tissue, but definitely needs watched. Wants to check again with an MRI in a month. Overall we're happy with the scan. Rest of cavity looks clean and good, everything is dramatically decreased (size of cavity, blood residue, swelling, etc.) Mark also described how he felt that his motor skills were getting back to normal.

I read that there are some imaging features that can correlate to the survival of GBM patients? For example, it stated that there was a survival advantage of brain tumor patients showing nCET on contrast enhancing MR scans? Mark did have some nCET on original tumor scans which may indicate a better survival rate. Not proven, but it is currently in a study and gives us some hope :)

Will be starting back on Temodar at a higher dosage. Will be watching to see how sensitive Mark is to it and will be getting blood tests to watch counts. What if counts go down, would we take some sort of boosting drug? No, don't like to boost wbc counts during chemo. For this round, we will start at a 75% dose (300mg) a day and will check reaction, if blood counts ok, will go to 400mg but no higher than that. Will take in evenings with kytril 5 days out of the month and were given a calendar to track it.

How often should blood tests be taken now? We will take one today and then will take on day 21 and day 28.

Will we need to start up bactrim again? Depends on if lymphocyte count is 600 or lower. Can tell by blood tests.

We had the EGFRvIII and PTEN test finally done on Mark's tumor.
We reviewed these slides.
PTEN: mostly intact (2), but focal area is slightly deficient (1).
vIII: weakly positive (1)
These results of the pten and vIII are not what was considered as meeting the criteria for use of tarceva.
Does this give any indications to avoid anything else? No, this is only a test for tarceva.

Last time we talked about Verinostat (saha) that is a current trial about to open at UCLA that is done in combination with temodar which is a phase 1 study, so we don't know if it leads to strong drop in blood count or what the other side fx are that can be associated with it. Gets evaluated every month. Would we be eliminated if we do dendritic cell therapy? You could not be involved in both trials at the same time and would have to do this trial after dendritic cell therapy. This is a phase 1 study (not open at the moment) that is looking at toxicity of verinostat. If we do this, we can't also do the dendritic cell (phase 2) study, for now, we are choosing the dendritic cell trial.

Last time, you all mentioned that with GBMs, the blood brain barrier is already disrupted. Is this common knowledge? Why do others say it is difficult to get past the blood brain barrier? You can tell if the blood barrier is disrupted just because of the fact that the contrasting fluid can get into the tumor to show up on an MRI. Still need agents to help get drugs past the barrier in other areas of the brain. The tumor does cause a local compromise in the blood-brain barrier.

Questions about recent Trials that we've found -

Have you heard about phase 2 trial at MD Anderson that tests temozolomide alone or in combo with thalidomide and/or Isotretinoin (accutane) and/or Celecoxib (celebrex)for patients that have had radiation in past 5 weeks? UCLA used to give all patients temodar and accutane together, but shown not to be too effective and had lots of sidefx (dry skin, etc) so they no longer do this, we're waiting to see more data about celebrex being effective before committing to use it, thalidomide has a side effect of being too fatigued at the dosage that needs to be given and disrupts quality of life issues so we don't use this drug now either.

I found a trial that used DCVax to treat GBM - The description of this one sounds identical to what Linda Liau is doing and looks like it is the same thing. Her trial is being done at several centers around the country.

Poly ICLC - UCLA had done this one in the past, but not doing it anymore (not open right now)

I read about a UCLA phase 3 trial with Enzastaurin? This one is on its way, but it is for recurrent tumors.

We will be involved in a UCLA research study that compiles medical information, mris, lab tests, pathology information etc. from many current brain tumor patients. The study is designed to compare this information with others with same tumor types to try and find similarities in treatments that are working for specific tumor type or any other useful statistics. It is an anonymous study. Can choose to withdraw from study if desired.

Coming up:
Will be taking chemo 3/15- 3-19
Meeting with Dr. Liau to discuss dendritic cell immunotherapy on 3/22 @ 3:30pm
Will get two blood tests in the next 4 weeks.
Will be scheduling an MRI in 4 weeks.

stopping temodar and other plans

2006-02-24T06:39:00.000-08:00

Mark's most recent blood test showed some low nutrophil counts again, so the doctor has asked him to stop Temodar for a couple of days. We'll get another blood test on Monday to get the counts checked out again. Monday is actually our last day of radiation and they were planning on having us stop the chemo then anyway. We're planned to have a 2 week break of both drugs and treatments and will be having a MRI on March 15th followed by a consultation with UCLA on the same day. March 16th we're meeting with Dr. Liau to discuss Mark being able to participate in her dendritic cell vaccine trial. UCLA plans to have Mark start on a stronger dose (400mg) of Temodar for a 5 days on, 23 days off regimen. Depending on how things go with Dr. Liau, we're also thinking about making a visit to Duke and to UCSF, but haven't yet set the plans. If possible, we'd like to see if we can plan the trips during spring break so we can all travel together. Overall, Mark has been doing great! He really hasn't been too fatigued or nauseous. He's started training for his bike ride and has been holding up well!

Mark is training for the LIVESTRONG Bike Ride!

2006-02-21T12:27:00.000-08:00

One more week of radiation to go! So far, he's doing great and we hope that he continues to stay healthy. Our new family struggle is not unique. More than 10 million Americans are currently living with cancer. More than 1.3 million people in the U.S. will be diagnosed with cancer this year alone.

In honor of Mark's battle with cancer, and for all of those millions of people in the same fight, he's participating in the LIVESTRONG Bike Ride in Irvine on June 25^th. He's planning on riding his bike 100 miles to raise money for the Lance Armstrong Foundation. His ultimate goal is $15,000. We just bought him a sweet new road bike and he's currently training every day for this event. He's going to do his best to stay strong for every mile.

The Lance Armstrong Foundation believes that in the battle with cancer, unity is strength, knowledge is power and attitude is everything. Founded in 1997 by cancer survivor and champion cyclist, Lance Armstrong, the LAF provides the practical information and tools people living with cancer need to live life on their own terms. Their mission is to inspire and empower people affected by cancer and they serve this mission through advocacy, public health and research programs.

We know he can reach his goal with the support of friends like you. If you're interested in helping him, you can give online at www.livestrongride.org

Next, click on: “Support a Rider”, click on Southern California and then type in “Mark” “Pace” .

Please ask your employer if they offer matching gifts, which could double your donation.

Thank you for your consideration :)

UCLA followup during radiation/chemo

2006-02-09T11:06:00.000-08:00

We had a followup appointment with UCLA to discuss questions/concerns while mid-treatment.
Here's what we found out:

We met with Dr. Leia Nghiemphu and Dr. Cloughsey

Blood pressure 115/59 temp 97 weight 171lbs height 59 (178.5cm)
Neurological exam, all was fine.

How are you doing with radiation/chemo? Doing fine, but have some constipation, not feeling nauseous. Use Miralax, whole grain, lots of fluid, prune juice.
Blood tests being done every week? Yes. Dilantin has been in range, no seizures. Expected date that radiation stops is around 2/28, well need to come back 2 weeks after radiation to get MRI (around 3/14). If you get them at UCLA, they can be read that day and are in the system; however, it is more convenient to get them at Hoag, but you have to make another appointment to have it read at UCLA.

We will probably be switching to Kepra side fx can make you sleepy, usually get used to in about a week, can also make you irritable (but this is unpredictable on who it happens to), at beginning you are taking both temodar and kepra so you can be eased into it. You wont need to get blood levels for Kepra. Will take 2 tablets twice a day is the goal. For first 3days, just take 1 2x a day (500mg each). Have a regimen that tapers us off dilantin

Has been complaining of vision problems (reading fine print). Radiation can dry out your eyes and may be affecting your vision. Wait until 2-4 weeks after radiation to assess. 43 is probably a good time to check your vision.
Has a little bit of spacial disorientation. Probably still having residual effects from surgery and anesthesia that could be causing this; also, radiation/chemo can effect this as well.

Can you look at our pre-radiation MRI and compare to operation report that said there was a thin irregular rim of enhancement? This is normal after surgery, could be there forever, may be scar tissues. We worry when things are thickened or have nodules.

Any time frame yet on when we'll hear results about the EGFRvIII and PTEN protein tests? These are done on research time, so there is no set date when this will be done. The results can help determine what drugs will be effective on a recurrent tumor. Molecular marker treatments that can identify the signaling pathways. Our reports show that this is probably being done now. They have been stained, Dr. Paul Mishel is doing this with data coming out of UCLA, he interprets these results and is also a researcher. Waiting for interpretation.

Some patients do well and tumor doesnt come back for 2-5 years. Can come back within 6 months (quite rare and usually older patients) and would indicate that temodar not effective.

In the pathology report, it talked about 2-3 mitoses? What is the significance of the number? These are the dividing cells and there are a lot of them in GBMs.

Still a bit congested and wondering about chest resultscan you explain what the SUV is on the PET scan we had a few months ago? It is clear and showed no activity.

Are there trials for upfront GBMs? Why did we not know of these trials? R115777 radiation/temodar study that had no openings at the time we needed to go through standard treatment. Verinostat (saha) is a current trial about to open on that is done in combination with temodar which is a phase 1 study, so we dont know if it leads to strong drop in blood count or what the other side fx are that can be associated with it. Still trying to figure out what dose (phase 1). Having a meeting tomorrow to discuss this new trial. Being run at 9 different centers and each opening can only take qualified candidates. Gets evaluated every month. Would we be eliminated if we do dendritic cell therapy? Would have to do after dendritic cell therapy.

What about gamma knife leading edge? Can it be done after radiation? Dont do gamma knife. It is like setting fire on your tumor, you have to do it very carefully or you can spread the fire to areas that spill over where you dont want it. It can spill over into your speech center. Would be risky. Series of phase 2 data accumulated showed some positive results, but phase 3 (randomized) results showed that it didnt make a difference

What about an MRI spec? Only needed when you have a tumor present and has to be at least 1cm in size. Kind of a messy test and gets a lot of false results. Can be mixed up with normal brain to get half a signal.

When will we be switching to Kepra? Can do it now.

How long will we stay on bactrim? Only through radiation and daily temodar. Once on monthly temodar, take bactrim only if counts drop too far.

Any precautions about getting a massage while still going through radiation/chemotherapy? Dont do any brain massage ;)

What is considered a WBC level that we should be concerned about? We look at absolute nutrophil count to determine if chemo needs halted.

What are antineoplastons? Treatment being done in Texas by Burzynski, which involves a mixture of vitamins. We dont know if it works or not. Have had 10 patients here that have done it, maybe it worked for 1;however, data really hasnt been published about it, so its tough to know if it works. Not approved by FDA, have to pay cash for it. Have to go there to get IV.

What other trials are available to us (besides dendritic cell therapy) ? Right now, none. Most trials are mainly for recurrent tumors. Most upfront trials are during radiation, which were half way through now.

Are 3 year survivors all that you have? No we have more (he gave me names, but I dont want to publish them on the website)

Duke likes to alternate chemo therapies. Different philosophy here. They switch it to avoid failure; however, we have no way of predicting which chemo will work for you. If chemo #1 worked, then you go on chemo #2 and it failed, it doesnt really show which one is the one that caused failure? In theory it is good if you can know which chemo therapies are going to work for you and then you can alternate. It can decrease your options later on if the tumor comes back.

What is the difference between gene therapy and immunotherapy? Gene therapy changes your DNA (none currently available for brain cancer). Immunotherapy you try to boost immune system to attack your tumor (dendritic cell).

Have you heard about the TK gene? Thymodine. Kind of like a vaccine trial, but would need injected into your tumor, meaning another surgery. If tumor comes back and there are surgical options, this can be discussed.

Since were now having radiation, if the tumor came back, would a form of brachtherapy be relevant? No, it gives a lot of radiation to rim of tumor and that is near very eloquent areas and it could spill over. Would be risky in our situation and could effect speech.

Can I get more info about Sulfasalazine as a way to treat GBMs? Being used, but we havent seen good results yet. Lots of side fx with it. We use it later on if other things are not working. May be considered if tumor comes back. The treatment originated from studies at University of Alabama Birmingham. You can find more info if you internet search for H. Sontheimer. I read that UCLA does do this, it is part of your planned regimen?
Not really Can you give me more info about what it does/risks/side fx? Headache, stomach upset, diarrhea, rash, can rarely have some severe side effects. We have used it in several patients. We would only use it after we have tried a lot of the other options.

What does UCSF propose? Similar to how they do things here at UCLA. We have a lot of the same trials. UCLA, UCSF and Duke also have several trials together as well. Sometimes they have trials that we dont but usually the same. May differ in what clinical trials are available, but not necessarily better, but can be something to try.

Questions about Liaus trial?
Should make appointment when we know when radiation is over. (I just set this up)
She gives you three shots of vaccine then back on temodar, will need to talk to her about what the procedure is now. She now has another protocol where she administers the vaccine along with temodar.
Is it still needed if there is no known tumor still there? Always assume that the tumor is there, and it would be useful.
Does it go along with temodar? Usually she has you take a break, but she has been changing her protocol.
How long is it administered? Once a month shots for 3 times
Takes frozen tumor from surgery, grinds it up, looks for markers, develops antibodies then injects it back in.
Does the WBC have any effect on when he gets the vaccine? White cells are what makes the antibodies, she wants your immune system to be good in order to help these antibodies do their job. Similar vaccine trials being done at Cedars and UCSF (just started).
Dr. Liaus treatment does well on fairly young upfront tumor patients (like Mark).
If we stay on temodar for 2 years and there is no recurrence, what then? Stop, then watch with MRIs.

Would you advise us of trials that are not UCLA-related, or do we have to search these out on our own? We share a lot of trials and well tell you.

Can I surf? You probably can surf, but make sure youre healed well and wait till after radiation.

We heard that a prolonged use of temodar has risk of the patient developing leukemia? Is this true? Yes, all chemo therapies have this risk. Temodar has the least risk, other chemos you can sometimes only stay on for 6months to a year, before the risk is higher. Temodar you can stay on for up to 2 years. Often if the agent did cause leukemia, it is generally not seen for 10 or so years. More risk of current tumor that possible leukemia.

I read that if the tumor comes back you cannot use temodar anymore? Is this true? We usually do not go back to more temodar in this situation. If so, what does your team propose to do next? Clinical trial or CCNU
There are numerous options that depend on each patients situation (repeat surgery, other agents (CCNU, carboplatin, Avastin/CPT-11, etoposide, clinical trials available at that time)

Were concerned that we didnt know about options for surgical treatments (i.e. gliadel wafers, live tumor tests, etc.) If we have to go to surgery again, are these things that you would make us aware of, or do we need to do the research ourselves? Gliadel wafers have been out since 97 and not that many people use them. Only 10% of academic centers use them. EDR has a problem as wellit has never been proven to predict what sensitivity the tumor has toward the different drugs, because the tumor for the tests is grown in different environment. Good in other tumors, but not necessarily GBM.

If we had to go into surgery right now, what would be the best method? Good resection is best for now along with trials and/or chemo.

If we mix up the drugs and the tumor comes back, can none of those drugs be retried? Right, it is hard to tell which is the drug that failed you.

We're concerned about the cause possibly being something in our environment.
Since we have a young child, we'd like to see if there is any link to our area.
If we were going to test our soil/water for possible contaminants that could possibly lead to cancer, do you know what chemicals we might test for? Dont know any chemicals or toxins that cause GBM, so dont know what to test for.

blood brain barrier in your brain, you have blood vessels that go to the brain. There is a barrier where blood cant just diffuse into the brain. there are special transport mechanisms. With GBMs, the blood brain barrier is already disrupted. Temodar is known to be able to get into the tumor

We had a pre-radiation MRI done at Hoag last week. Did you receive the
report from this? Do you have any comments about what you see in this MRI in comparison to the one we had post surgery? There is still blood within the cavity, there are changes around the cavity, but impossible to say what these represent. The latest MRI will be a good baseline to compare subsequent MRIs.

Do you have statistics about what percentage of people that GBM resections have to come back and do something again? This happens in the majority of situations
Is there an average amount of time that you see regrowth even after starting radiation/temodar? Are there some people that have regrowth even during standard therapy?

After we are done with our treatments, when will the bigger dose of temodar start?
Will there be a break between last day of readiation/chemo before getting on the 5days/month plan? This will start 2 weeks after last day of radiation Ok, so the last day of radiation is also the last day of the 150mg Temodar and then we stop for 2 weeks before starting the 400mg temodar? yes Will bactrim still be needed in this interim period? Depends on his white count

Dr. Christopher Duma

2006-02-03T05:39:00.000-08:00

Last night Dr. Duma was a guest speaker at our brain tumor support group. He was a great speaker and had many interesting things to say....

Dr. Christopher Duma
Medical director of gamma knife program at Hoag
He does ~150 craniotomies a year and ~200 gamma knife procedures a year
There are a number of ways of improving outcome than what used to be available in the past
Biggest improvement is operating microscope, but since then, little has occurred until neurosurgical navigation (mri with real time intra operative guidance about 10 years ago)
Using navigation with microscope is the standard of care for any brain surgery that exists today. Navigation allows smaller cranial openings and smaller pathway to get through brain to tumor.
When you open a head, you usually can't see the tumor because they are usually deep. Used to use ultrasound to help find the mass, but sometimes that wasn't good enough. With computer navigation it makes it much easier, gives millimeter accuracy.
Improving outcomes
Gamma knife is good for metastatic tumors (tumor cells travel in the blood to the brain). Cyber knife also can be used for these types of tumors. Gamma knife has a more accurate focus and less radiation to the brain, but can only treat tumors within the brain. If out of reach of the gamma knife (spine, skull, etc.) cyber knife is used.
Implanting gliadel wafers (soaked with chemotherapy) into the cavity, if it is in the lobe of the brain (not deep) is also an option.
People are now starting to try gamma knife for GBM (newer technique). GBM tumors are able to migrate through the brain. Difference between I and II and IV is ability to migrate through the brain. Tests done on tumors to check migratory ability of astrocytomas, they found that the more aggressive ones become irregularly shaped and start looking and moving like an amoeba, they start spreading and getting polarized and start getting the ability to contract and move on their own (kind of like an inchworm)! When in-utero, brain forms as a ball of neurons in the middle of the skull, at a certain point of development, they migrate to proper positions to form brain. With GBMs, cells are reverting back to primordial way and regain the ability to migrate again. We want to fix it so they can't migrate. An experiment was done taking a GBM and put it in a jar...they radiated it with low dose radiation, then did high dose radiation (like gamma knife) found that cells moved more if they got low dose radiation vs 4x less if they received a high dose of radiation. Adding a high dose may help stop the migration, if they can't migrate, the cells will hopefully die off. At Hoag, we've been radiating leading pathways of GBMs to cut tumor off at the pass (callaed gamma knife leading edge); however, we still sometimes faile because tumor cells can migrate farther than we can imagine, you need scans that can show where the growth is (MRI spectroscopy that can show chemicals in areas in brain that can show where tumor growth may be).
Best chemotherapy adds 3-4 months survival (5% alive at 2 years). Our outcome (including gamma knife leading edge) has 20% survival at 2 years. My philosophy is to incorporate everything and throw it at the tumor. 1st start with good resection, radiation, boost, temodar during and after, gliadel on recurrence, more chemotherapy. (There are other approaches out there as well...i.e. Dr. Friedman (Duke) uses mostly temodar with other chemo agents)
Temodar is #1 drug for treating GBM. Original papers show it works well for grade 3, doctors started using it off label for GBM. Big study showed marked improvement for Temodar and GBMs (Stupp regimen). Studies show that it really has the ability of crossing blood barrier and being effective. New trial going on (Europe and USA) with 800+ people in study to look at effects of Temodar. If tumor recurs, then they are no longer valid for this trial and fall into the Hoag trial for gamma knife on recurrent tumors. All brain tumor patients should be getting scans every 2 months at minimum, at first sign of progression, you need to start doing something. We have had a patient on temodar for 4 years. There are risks of various cancers (leukemia) with all chemotherapies, but odds of succumbing to new cancers are low compared to the brain cancer itself.
Immunotherapy has improved outcome greater than temodar and gliadel wafer studies. Immunotherapy is currently in trial and only for upfront GBM. The idea is that our bodies will hopefully develop immunity to daily exposure. White blood cells have been educated and often know how to fight disease that they've already seen (i.e. chickenpox). We hope to make you immune to your own brain tumor by programming your white blood cells to fight brain tumor cells and destroy. Our trial takes some white blood cells out of your body and we "supercharge" them (make them angry toward the tumor) for about a week with a substance (interlupen 2?). Through another craniotomy, we pour mixture (or paint it) into the tumor cavity so that they can get in and fight the foreign matter (tumor cells) then go out into lymph cells and educate other white blood cells to fight any cell that looks like a tumor (bad guys). Hoag has a patient out 9 years with gamma knife to leading edge and immunotherapy.
Has a patient (8 years) resected, radiation/chemo, 6 months later tumor came back, did gamma knife and immunotherapy, still alive today. How is Hoag's trail different than UCLAs? Not much different at all. Dendritic cells are white blood cells that present antigens to T-cells grown from tumor, injected into your arm vs being "painted" in. Both treatments "supercharge" the white blood cells, same concept, different approach. Hoag doesn't harvest from actual brain tumor, but puts them back in tumor cavity directly. UCLA harvests from tumor itself then injects it back in the body.

PET/MRI for brain tumors like these is worthless, it will never show leading edge of tumor and won't show you where tumor is going. MRI spec and MRI (with flair sequence) are the best for showing where the tumor is going. MRI spec can differentiate necrotic tissue vs aggressive cells (maliginant tumor).

Virtualtrials.com by Musella (who is a brain tumor survivor that set up this site) is an excellent resource to keep up to date on what new trials are going on out there for brain tumors.

Mark is a candidate for immunotherapy and gamma knife leading edge. Mark's tumor is in a lucky spot in the brain. His symptoms are often described as: Gerstmann syndrome (calculation trouble, disorientation)

Don't normally see necrosis so soon after radiation.

Duma doesn't do spines, backs or necks. He only does brain tumors and Parkinson's disease treatment(stereotatic-type of treatment). He does surgery, he picks neuro oncologist, helps follow up on scans, etc. Here's his website: www.cduma.com

follow up with Dr. Martin

2006-01-31T07:35:00.000-08:00

Dr. Martin called us at home last night to answer some of our outstanding questions, since we weren't able to meet with him face to face last week....

How many GBMs do you deal with a year? 20-40

When did it start growing? It was growing the whole time, every (UCLA) scan showed some minor change.
What part of tumor was growing? Area of abnormality didn't change much from Oct-Dec, the center changed a bit. Percentage? Looks like about 50% of the tumor was necrotic.

Still have trouble sequencing and getting words out sometimes'is this permanent, evidence that there is still something there? It's not really worse than before surgery, may improve with time, hard to tell at this point.

Can I resume driving? yes, shouldn't be a problem

When can I resume contact sports (i.e. hockey)? Will I ever be able to play again? Would wait probably at least 9 months and let skull heal fully. May not be the best sport and may want to choose something with less risk. Only had one person go back to playing contact sports, he was a professional hockey player and needed it for a living.

How about a running sport (i.e. ultimate Frisbee)? This would be fine. He can try it now, if he gets a headache, stop, shouldn't damage anything if you run.

When can I resume weight lifting? Shouldn't be a problem. Try it out and see how you feel.

What is considered our date of diagnosis? 1st scan that showed abnormality then surgery confirmed malignant tumor.

Is there a period of time that you typically see regrowth? Many factors involved.

Do you have other patients in our age range that are still surviving with GBM? Yes, I have given patients names to Jennifer to pass on to us.

Do you have statistics about what percentage of people that GBM resections have to come back and do something again? 70%

If it comes back, are there other procedures that you use? Generally the same sort of surgery, depends on what it looks like and where it is.

Since we're now having radiation, would a form of brachtherapy be relavant? We don't really do this now. It has been used (back when training), but is used less now than it was 20 years ago (kind of like a fad ) there are very few people doing this now, stereotactic surgery same results and used more now.

Do you have any internal chemo procedures that you perform? We haven't been doing that.

Have you all heard about the Extreme Drug Resistance Assay (EDR Assay)? There are about 50 of these types of things around the country that claim the same thing, most remain unproven, none of them are a standard at this point.

If one of your children had a GBM resection, what treatment(s) would you consider for them? Definitely Dendritic cell immunotherapy (Dr. Liau)

Do you know of any former collegues that are doing trials for upfront GBM? UCSF, Mitchel Berger (chief of nureosurgery)

Can you look at our pre-radiation MRI and tell us if there's anything to be concerned about? Didn't see anything of concern at this point.

Is there less space for swelling,etc? now has more room, because tumor is gone

nutrition consultation with Dr. Wallace

2006-01-24T14:07:00.000-08:00

We had a great consultation with Dr. Wallace. She really knows her stuff! We now feel very confident in her abilities and her knowledge. Here are the results of our conversations...

Medical-related
Have you had success in fighting cancer without radiation/chemo?
some clients do this, but they are in the minority, I do have long term survivors that went this route (8 & 5 years)
and also a long term survivor (8 years) that did do radiation/chemo. It really depends on what you believe
is right for you, if you believe that radiation/chemo is the right thing to do, you'll do better with it
than if you were forced to use nutrition only.

*Other Diets*
We heard that an acidic body encourages cancer? Mostly true, but there are some studies that show that some cancers thrive in alkaline environment..
Fruits & veggies have direct effect of genes and can manipulate tumor suppressors, etc

Do you know about the blood type diet? There are similarities and differences (ie tomatoes, peppers, etc.) Don't worry
about the acidity of tomatoes, should be concerned with lectins of your blood and how they work with the various foods. Need foods compatible with your blood type
that don't "glue to your cells". If you're having trouble with your immune system, (WBC <400,000) then you should be sticking closer to
the blood type diet. We will need to fax blood reports once a month so that these kind of levels can be watch and responded to. Following
the blood type diet boosts your immune system, but it also excludes foods that can help reduce tumor (i.e. lycopene - tomatoes). You need
to watch your body and decide what is best, if you want the most cancer fighting action with food, you may have to deal with a more supressed
immune system and boost it with other supplements (i.e. c & selenium). It is probably important for now to make sure you are eating the
foods that help fight the tumor (i.e. standard radiation/lycopene (18mg) has studies that show 80% had tumor regression at the end of radiation vs 40% that had no lycopene)
Eat plenty of red and pink veggies/fruits to get this benefit.
There is a contreversory about antioxidants during radiation, antioxidants in food are actually more potent than supplements.
There haven't been any studies that showed antioxidants had an adverse effect on radiation except for synthetic antioxidants.
There are studies that show selenium is good for brain tumor patients because of its ability to reduce inflammation.

We have pH strips, what should we be looking for? When your testing you're realy checking on your body's response to what you've been doing over the past (functional testing)
If youa re going to test, you would need to give the body a certain challenge and be consistent about how/when you to test to determine if what you're doing with your
diet is effective. For example, one test is to eat an acidic diet for 3 days, take urine ph to see how you respond, if you were
very alkaline,it may indicate that your body is making ammonia, if you tested acidic it may indicate that you did not have enough minerals,
or if you tested ok then your body has what it takes to counter balance the acidity.
Ph testing is not essential to do for bain cancer, but is important to check in colon or lung cancers.

Are you familiar with Evan Ross? Yes. They are friends. They often consult with each other, he refers to her for nutrition and she refers
to him for Chinese herbs and acupuncture.

*Cooking*
What to use as a thickener? Arrowroot would be ideal, kudzu is a sea vegeatable that is a great thickener(some studies show it may help for cancer), cornstarch
What kind of pan to use that won't stick? I do use non-stick, but rarely...egg only, low heat only
I prefer to steam/saute with broth, water, spices then covering to cook.

We like Indian food...Indian food is great for us, she will get us a title/author of a recommended indian cookbook.

Why give us recipe with ham (ie mung soup recipe)? There are studies that show mung beens as a radiation helper. At the bottom
of the recipe there should have been a disclamer to not use ham and what you could substitute; however, this may have gotten cut
off at the bottom of the fax?

We read that curcumin can interfer with chemo, but it was listed as something we should take during chemo?
curcumin interacts with cytoxin chemo, but ok with temodar

Can we cook with alcohol? yes, because alcohol will boil off

What about drinking wine? Not known abou the effect for brain tumors, be careful with seizure drugs, can also raise blood sugar. If you do partake, drink with meal

Pacific brand of broths is great for cooking, even organic chicken, mushroom, etc.

*Supplements*
Are there any other sources to buy supplements? It seems quite expensive. If you have family member who is in practice you can get discount, another good source is www.iherb.com

Concentration of pomegranate - at risk of too much antioxidants during radiation? High concentration could be highly astringent and may worsen constipation. Stick to 1oz or less a day.

Were leaning toward the radiation/chemo plan for supplements. Once off radiation, what are the limits to consuming foods/supplements on your diet? Should we be concentrating on the rest of them in your list?
We will need to run some of the tests that she recommends after radiation and use it as a guide as to what supplements are good
Currently, continue to follow radiation/chemo supplements and add to current - selenium/thymus for immune boostings and boswania as an anti-inflammitory

Why wasn't thymus listed in radiation complementary section but was in the quick chart? should be in both, nice catch

If he takes Taurine, should he not take bromelain? Should they not be taken together?
Taurine explanations says take away from bromelian (p84)?
Use taurine if you have seizures (it is a protein), bromelein needs to be taken withouut protein, use taurine if you are having seizures or are run down with radiation

trouble taking supplements on time...separate into packets, easier than opening all the bottles
check multi-vitamin for copper, there should be no more than a 10th mg

*Grain*
100% whole wheat, OK or not? type 0/B not good with whole wheat, not so bad for A, but watch out for glycemic index. If choosing whole wheat products be sure to choose high fiber choices 3-4g
W
hole grain bagel with lox? raw is ok, smoked is not so great, but no research on effect with brain tumors, use multi-vitamin with smoked/lunch meat because studies show vitamins c/e help counteract nitrates in these

sushi good, but not if WBC is below 2.5/2.0

*Dairy*
Is sheep cheese legal? yes
How about organic cheese that doesnt say grass fed? The organic standard means that a cow must be on pasture 50%. During summer should be good, but in winter months may not be...buy cheese from CA, buy from Organic Pastures in No. CA.
How about buttermilk powder lilsted in the ingredients of mixes? should be fine, very little fat
Suggest brand name of grass fed dairy products in store: Strauss Family Farms, Cowlgirl Creamery, Organic Pastures (they have a great ice cream)
low fat cheese (mozzarella, parmasean) if not organic - when buying orgainc, get full fat

*Veggies*
Is juicing vegetables good enough to get adequate servings? For 2 serving ok. Don't just use just carrot add others. Don't use it as your only way to get veggie servings because you need the fiber to create butyrate (in burzyinski's treatment) in your gut

*Snacks*
Are corn chips w/o forbidden ingredients that are not organic legal? yes, but not daily
Carob? very good, no drawbacks
Expeller soybean oil or canola in ingredients - neutral, source of omega 6 fats and in ingredients usually small amount, don't cook with it our use as base

*Drinks*
Whats the best way to get purified water? reverse osmosis (filter is expensive) can get this filtered water from health food stores by filling up your own bottles,
biggest problem is copper - Britta/Pur will get rid of it
Flouride a concern? not for brain tumors.
What is the best bottled water? get the assay from each company and check copper levels

*Other Food*
What deep sea fish? (halibut, roughy) any cold water deep sea fish, the larger the fish more likely to have mercury, sardines are best, chunk lite tuna has low mercury, but albacore is higher
Items not listed under either (emphasis or avoid/limit) list ok? (ie garbonzo) very healthy, can make hummus with tempeh too

*Other Medical*
Any correlation with nightmares? nightmares are often evidence of a vitamin B defficiency; however, I'm going to look into this further
Any correlation with anger? brain tumors may have been in your head for years, anger is a common side effect
Candida test & cure? burberine best to fight candida and is also a radio sensitizer, limit sweets, there is a test ($250) can get a test kit
Athletes foot related? yes, underlying immune suppression trying to fight brain tumor and not athletes foot/candida etc. need to focus on immune support

*Environment*
We know Tom Atkinson and he lives in our area who is also one of your patients.
We want to have our soil and water tested, do you know what cancer-causing toxins we should test for?
Since whatever caused your cancer probably happened many, many years ago, it is usually best to test what your body has been exposed to and not what is currently in your environment.
Check for toluene, heavy metals (hair analysis) and maybe get an ion profile (measures everything, candida, organic acids (chemical, pesticides, solvents) but is expensive

You're first exposed to something that damaged cells, cancer doesn't develop until 5-20 years later, immune system usually gets
rid of bad cells in your system, but after cancer cells have evaded dna repair and immune system, then there is something that
usually acts as an agent that promotes it to grow into a tumor.

NJ/NY high brain tumor clusters also in CO and Seattle (close to airport)
Exxon had brain tumor cluster

liver takes toxins and makes them more water soluble (Phase 1 and makes them carcenogen) then binds to protein then excretes it (phase 2)
many people that have cancer don't have enough phase 2 and more phase 1
for stage 3/4 cancers we don't focus on detox, but anti-inflammitory
for Andrea/Brock, be sure to eat good root foods, and get liver support

*upcoming tests*
c reactive protein run tests 10 days after last day of radiation
immune support
copper test

exit visit with Dr. Martin

2006-01-24T06:20:00.000-08:00

We had our last appointment with Dr. Martin 01/23/06; however, he was again called to surgery and we didn't end up actually getting to talk to him. We did speak with Jennifer Varma, the nurse practioner. We had some of our questions answered, but many were not. We currently have an email in to get these other questions answered to Dr. Martin or will possible schedule a phone call. Here's the latest...

They gave us a full report of the operation and pathology reports, etc from surgery.
Mark is just now starting to be able to type a bit better. Dialing phone is pretty good now.

What part of tumor was growing? Necrosis part or full tumor itself? Usually full tumor itself, but it could've been both, would need to get this info from pathology.

Since we now know it is a GBM, do you think it was detrimental that we waited for surgery? Normal amount of time.

Still have trouble sequencing and getting words out sometimes...is this permanent, evidence that there is still something there? It is evidence that he had surgery and you abilities may come back. Full recovery can take up to 18 months.

Can I resume driving? Yes, but keep an eye on how you're feeling.

When can I resume contact sports (i.e. hockey)? Will I ever be able to play again? Not advisable for now.

How about a running sport (i.e. ultimate Frisbee)? Running is OK, but start at jogging, shouldn't do sprinting for now pr anything that gets you all worked up. You need to work up to it.

When can I resume strenuous activity (i.e. weight lifting)? Not advisable for now, definitely wait until after radiation/chemo and healing begins. Light lifting OK, with high repetitions.

What is considered our date of diagnosis? Date on pathology report 12/23/06

Is there a period of time that you typically see regrowth? Just depends.

Do you have other patients in our age range that are still surviving with GBM? Dr. Martin will talk to their surviving patients and pass our contact info.

If it comes back, since we're now having radiation, would a form of brachtherapy be relavant? Dr. Martin doesn't do this procedures, but Dr. DeSalles and Dr. Selch (and two others) could.

Is this our last visit with you? Yes unless there are more surgical issues.

Questions about how plate is actually connected? Titanium plate (more like a mesh) is a bit bigger than bone and screwed into existing bone

low WBC, more research and meetings

2006-01-20T14:38:00.000-08:00

We recently found out that Mark's white blood cell count was a bit lower than desired, probably due to chemo (temodar). The doctors had him refrain from taking the drug last night and another blood test was taken today.
We're waiting for the results to determine what to do next.

In parallel with this initial standard therapy (radiation/chemo), "the team" is doing lots of investigating to find out what are the best steps to take after we're done with radiation. We've been reasearching different philosophies of different doctors and are trying to narrow in on who we'd like to follow. We've been reading testimonials of long term survivors as well as talking to others that are going through the same fight. So far, it seems that there are some conflicts between the various philosophies of doctors and research centers.

UCLA's arsenal consists of the following: single agents - CCNU, carboplatin, etoposide or combo agents - Avastin/CPT-11 (combo) and possible clinical trials
DUKE's arsenal consists of the following: single agents - CCNU, tarceva(if tumor's molecular makeup qualifies testing v3, ag3 and p10) or combo agents - Avastin/CPT-11 (combo) and possible clinical trials

There seem to be several similarities as well as differences between these two. Over the next few weeks we will be ironing out the specifics on how these approaches differ. We'll also continue to research and see what else is out there that seems to show some success and is not too risky. We know that there is some sort of personal vaccine trial going on at UCLA that we will probably qualify for and are getting in touch with all of the right parties now. We have done research on other things as well, like monclonal antibodies, but since radiation has started, this is not an option for Mark (according to Dr. Friedman @ Duke)

We've also been reading a book by Dr. Paul Zeltzer that outlines alot of basics and helps you figure out what questions to ask. We've checked it from the library and are digging through it. Lots of the info is stuff that we've already discovered on our own, but there are some new eye openers in there as well. He is also UCLA-related and we're going to try and meet up with him as well.

We've still been digging through the nutritional packet that we received from Dr. Wallace in UT. We've been formulating a whole list of questions and will have our consultation next week.

We also have our post-surgery follow-up meeting with our neurosurgeon (Dr. Martin). We're hoping he gives Mark the go ahead to drive 'cause he's had just about enough of all these women behind the wheel! ;)

In a few more weeks, we also have our first followup meeting with the oncologist after starting radiation/temodar.

second week...

2006-01-17T06:05:00.000-08:00

Mark is starting his second week of radiation/chemo.
So far so good, he has not felt naseous or fatigued yet, but many people keep warning him that he will get really, really tired.
My mom is still here helping out...chauffer, cook, maid, nutritional researcher, etc :)..and is being a tremendous help!
Last night, we attended a support group for kids who have a parent with cancer. It was our initial visit and Brock did like it. While the kids were meeting, the parents also met to discuss how they were doing. It was a mix of families who have lost some one to cancer and families that were currently dealing with many different forms of cancer.

new nutrition guidance and radiation/chemo started

2006-01-11T11:56:00.000-08:00

Mark had his first dose with radiation and chemo yesterday (1/11/06).
They had to put him in his custom fitted mask that kept his head in a super still position.
He was lying down and the procedure lasted about 15 minutes.
He said he really didn't feel anything at all and was suprised by it.
He felt fine when he left.
Later that night, he was to take his first dose (150mg) of temodar (chemo)
An hour before he had to take Kytril which is a drug that helps ward off any nausea.
This morning, he said his stomach felt fine, but he did feel different in his head. He wasn't quite sure how to describe the feeling, just that it was different and he didn't feel as good as he thought he did the day before.
He goes in for the next dose of radiation this afternoon and will continue with this schedule (around noon) through next Thursday. Then they will be able to put him on a more friendly schedule of 9am(ish) appointments.

This week we also received our personalized report form Dr. Wallace (nutritionist specializing in brain tumors in UT) It was quite an extensive packet! My mom, Mark and I are going to be digging through it to learn more abouut foods and supplements. So far, it is very similar to the blood type diet and other diet we got from the previous nutritionist; however, it is much more leanient on the types of foods you can have (yea more choices) but it is still mainly a vegetarian diet. They gave us some hints on certain foods/supplements to use during radiation as well. We will be doing all sorts of experiments with how to make mung beans taste good ;)

questions about proton beams

2006-01-06T08:32:00.000-08:00

Spoke with some one from the radio oncology dept @ Mass General about proton beam therapy...

* this therapy is typicall done After standard and only if lesions are small and well seen. Usually best on irregular shaped tumors
* What facilities are doing this procedure? Mass General, Loma Linda, Indianapolis
* Is it appropriate for glioblastoma multiforme IV? Yes, but after a good resection and usually standard treatment.
* Are there other types of stereotactic radiation that would be appropriate? Depends on number of lesions and if the are easy to get or not.
* This is a particle beam vs photon beams gamma/xrays, what is the advantage? Tumors that are irregularly shaped, soft tissue in brain spinal cord in children. Heavier particle, moves at slower energy, not as much dose gets scattered around. Beam more controlled.
* What is the treatment time? 1 or 2 treatments? Depends on the lesion, usually a couple of weeks, stereotactic methods (ie gamma knife) are usually only one treatment.
* Is it only done on tumors, cavity, recurrent or upfront? Still relatively new, so carefully choosing who gets this procedure. Resection is first best treatment, then treatment on protocol of trials.
* Can the dosage be limited so that it can be used in a way similar to standard treatment by treating the cavity, the leading edge and a 2-3cm margin? They can design the plan however they want; however, it is really for specific irregular shaped tumors.
* What is the dosage or radiation, is it different than the amount of radiation we'll be getting with standard treatment? Same as standard
* Can it be done again? Depends on which area was originally treated and how high the dose was, may be able to retreat a smaller area.
* Can it be done after standard radiation, instead of standard radtiation or at the same time? In some cases after standard or could be done instead of, but not at the same time.
* What is exit dose? No exit dose
* What are the known risks with this treatment? Radiation necrosis, same as standard.
* What are the risks of radiation necrosis of this treatment? Not known, treatment hasn't been around that long to have long-term results.
* What are the known benefits of this treatment? Less healthy tissue effected.
* Shouldn't we get a pre-radiation MRI to determine most accurate area? Depends on physician, usually will get an MRI or CT scan.
* Should there be any MRIs done in between to check if it is working? Don't do it during, 6-8 weks after
* What is currently being done to improve the efficacy of this treatment (experimentally, clinically, etc?) www.nci.gov click on pdq type in type of tumor, region, trials it will pop up list of trials
* Are there any other treatments that we can do with this treatment or before/during/after that we should consider? Anything in setting of clinical trial
* What does this treatment prevent you from doing in the future? Does it preclude other types of radiation (ie external treatments like gamma knife & proton or gliasite or other internal radiation therapies) Again depends on dosage of radiation given to tissue.
* If a tumor shows up in a different part of the brain or body, would this treatment or even standard radiation be applicable on the new tissues? yes
Radiosensitizers -chemicals that modify a cell's response to radiation - not usually used for proton therapy
Radioprotectors - drugs that protect normal cells (promote repair) from damage caused by radiation therapy - not routinely used but sometimes in trials

brain tumor support group

2006-01-06T07:48:00.000-08:00

Last night we attended our first brain tumor support group. It is a free service offered by Hoag (the hospital closest to us) and was very helpful for us. We met two other families that were also experiencing the madness that we are going through and it was great to bounce ideas off of them, get information and verification that we seemed to be on the right track. We're looking forward to continuing with this group for help and support in the future. They also told us about a special kids group as well for children who have a parent with cancer. It is a fun setting where kids get to communicate with other kids going through the same things but also get to have a good time and feel comfortable expressing themselves.

spoke with the main UCLA oncologist

2006-01-04T05:41:00.000-08:00

This is our main oncologist contact at UCLA, but he was of course on vacation last week, so we didn't get to meet with him personally. We had more questions so set up a phone conversation to get some answers...

Name: Dr. Timothy Cloughsey
Nurse: Mady Stovall

Need contacts of survivors? Any websites or published data? Have different people, would need to contact them first
When can we do the MGMT test? People having difficulties with the test and making it a clinically useful test. The study that is done cant be done reliably each time. There are some general things that can be done with the menthalation that can be done in younger patients. Our scans show less edema and tumor is more localized tumor. It is a difficult test to do and be reliable.
Studied 110 scans before surgery that were glioblastoma. 2 features that were predominately important: necrosis, extent of swelling (ours is low which is positive) areas of non contrasting tumor, size of necrois is now known
Still believe that ours had a defined boundary vs. one that was more diffused? Still the case
Does a tumor board actually meet to discuss best method of treatment for our case? Mostly what happens is we have a set way of treating these tumors, we meet every week, we have about 100 new gbm patients in a year. We have a pretty good idea of how to treat them. Tumor board meets (pathologist, surgeion, etc) and clarifies diagnosis. Standard of care therapy at this point is radiation and temodar. There isnt more that has been proven at this point that can be done. We dont recommend gamma knife boosts cause its not proven effective in randomized setting. We have other experimental approaches, but studies on hold and we dont want to hold up therapy waiting for these. After radiation completed, ther are other possibilities of combining with temodar, we have to see how things are going and what is availability.
Need pathology slides, how do I get those? Call pathology dept. Takes 3-5 days, do we really need to wait that long? Everything should be completed, final sign out was 1/3/06. Not sure what the issue is that holds it up?
Geminsto feature seen? If so, it may determine if tumor will do well with radiation. Dont think it is a reliable finding. They usually do describe it if it is there.
Most of what we are reading about radiation hasnt changed much in 20 years and outcomes arent better at all eitheris there a risk of not doing it at this point and doing other things first?
If you do radiation now, what does it preclude you from in the future? Much of the difficulty with some of these approaches is there is a very high selection that occurs when going into these studies. They have many factors to get accepted. No connection with a ventricle, etc. phase 2 study recently published by Duke. In almost any setting where people have a likely ability to enter into the trial they have a better selection to go into the trial. We have a number who are 5 years out that have a GBM and fit into a similar condition. Adding more radition to an area like this increases likelihood to affect sensitive areas of the brain. We want to minimize negative effects. You are likely to do well with standard treatment. We see that you would seem to do better than others. You run a risk of being too aggressive.
If we go on radiation/chemo and immune system gets knocked down, should we be concerned? It comes down to what is the relative risk that will occur to decreasing immune system (somewhat effected with chemo). We know that tumor came on setting when there wasnt anything wrong with Marks immune system. His immune system wasnt compromised when this came on. We have data on doing nothing and its not very good.
When you should you do chemo/radiation? In all of the data, chemo first then radiation doesnt have results. Radiation therapy seems to be the most important and shouldnt be delayed. Pre-temodar, median survivals were only 12 months. Younger folks are shifted toward improvement. No data to support chemo first would be better. Dont know the answer about using chemo after. Temodar was designed to be delivered at same time.
What about blood barrier problem? Temodar has been shown to effectively get past this barrier. We can give anything, but data presently shows that radiation with temodar and temodar after shows better than radiation alone. Temodar is the first one that ever showed a benefit in GBM.
Proton beam therapy in this case? There is a narrow therapeutic index (how much radiation can you give and effectively kill tumor without killing narrow brain) Proton beam radiation in gBM in this disease ends up killing more normal cells than normal photon process. More dramatic negative effect that occurs with proton vs photon. Proton too much and have significant cognitive decline.
Would you recommend localized treatment down the line (gliasite, etc)? No. Every approach of boosting radiation beyond tolerance havent been proven in phase 3 studiesno benefit. What about localized chemo? There was one study done, way it was done, took patients at time of surgery and given wafer or sham. Group with gliadel wafer did a little bit better. Looked at GBM patients and really saw no difference, positive info wasnt impressive. Good resection in Marks casecontrasting areas and surrounding areas had been resected.
should we get another lung xray/scan? It would be worth it.
When switch to kepra? Why are we switching? Get it going now. Good to sit down and talk about how to switch over. Need to write out a schedule. 3 weeks into radiation, well switchwell see him at our next appointment.
Have many patients had trouble with joints? Not most common side fx
* is this considered photon beams, xrays or something else? Xrays/photon
* Is the therapy were using 3D conformal radiation therapy or 2D? 3D
* How many beams will be used? 5-6 beams
* Does the dosage decrease as it reaches tumor area and effect the healthy tissue that it has to go through more than the tumor area? No, as the beams converge, you have increased energy deliverd to that spot.
* What are the risks of radiation necrosis of this treatment? 5%
* Shouldnt we get a pre-radiation MRI to determine most accurate area? Not a bad idea. Surgery on 19th, you could, but it would be about 3 weeks from when . There is post surgical scarring that may look nasty.
* Should there be any MRIs done in between to check if it is working? 8+ weeks seems along time to wait? If someone having a problemyes. Need total dose to get the benefit.
* If chemo not working, what would we try? There are other standards and trials and try different ones all of the time. Body doesnt build up the immunity, but the tumor does. If we find something that works, we want to stick with it. Hasnt been proven, just an idea. Interval of MRIs is every 2 months sometimes 1 month. Round of chemo 6 weeks or 4 weeks.
* Radiosensitizers chemicals that modify a cells response to radiation - None shown to have a benefit
* Radioprotectors drugs that protect normal cells (promote repair) from damage caused by radiation therapy No one really using these
* Trials currently involved with? One open, one using R115777 with temodar. Dr. Liau, dendritic cell trial, creating vaccine from tumor and patients cells and injecting. Worth trying? No trial currently open. After radiation completed. Similar situations, beware, trial might not be open. Worth doing if available. Doesnt seem to be a down side. Still being evaluated
* IMRT no different than standard
* Determine treatment based on tumors genetic activity EGFR inhibitors supposedly work better on tumors that have EGFRvIII and PTEN proteins. (Dr. Paul Mischel UCLA) Is there a way we can get a genetic analysis of our tumor to predict the tumors sensitivity to specific drugs? We will be running these on the tissues!

some advice from 3rd party retired doctor

2006-01-04T05:35:00.000-08:00

One of Mark's sister's friend's dad had GBM several years ago (1995) and we talked to his doctor about his thoughts on standard treatment and upcoming trials. He is now retired, but at one time worked alot with BNCT.
A transcription of our conversation is below.

Name: Dr. Merle Greibenow (retired)
Date: 01/02/06

Has been following Dr. Friedmans success, he has a fair amount.

Contact a neuro surgeon in Japan to see if he could be treated with BNCT, but cultural differences are rather shocking. Facility in NY where many BNCT patients were treated, but not a particularly good design because it had 4-5 damaging contents in beam, was OK for dogs. Had one patients that lived 9years 5months with most of his functionality. Japan does not have an ideal nutron source from with to extract a beam. Need high energy neutrons. Low energy neutrons with boron damage the scalp and tissue near tumor. This treatment is good for treating the cavity and the surrounding area. The brain has 5 fluid chambers called ventricles. As tumor grows, it can displace this fluid that allows the brain to be able to handle a tumor 5-6cm before symptoms. Many treatments cause swelling, so the tumor has to be resected to make room for the treatment. xrays come in along beam line, does same amount of damage all along axis of each beam. Braggs peakproton relies on this to some degree, when charged particles pass through tissue at speed of light they dont do as much damage, when they slow down they can do the most damage which is how they can control the depth and pinpoint where the beams do the damage (work done at Berkely) It is superior to standard treatment, (Loma Linda, Berklely) cant change the mass of the particle, so you dont have as much control over where it can release its energy. Gamma knife has a narrower beam of xray. You dont know where the tentacles arewith xray therapy, they focus on the area that has edema that surround tumor mass, data suggests that the isolated tumor nests will be in this region. Isolated tumor cells left behind. Gliasite has some advantages, because it can effect the areas that are close to the cavity and effects some of the area with the edema, marginal improvement over stereotatic methods. Normal brain tissue more easily damaged by xrays than tumor cells. Glioblastomas are grade 4 in series of types. Can start out as less aggressive and transition to high grade. Pathologist looks throughout tumor and categorizes by the most aggressive cells he sees. Rarely does he look through, 2 classified as high grade and 48 low grade, but will say it is the high grade. Two grading standards (WHO & Nelson schema) WHO requires three physical characteristics and Nelson requires a fourth (micro necrosis). Stay away from Dr. Berzinski. Geminsto feature seen? If so, it may determine if tumor will do well with radiation. Neurons dont divide. Objective of radiotherapy is to injur cells so they cant divide and can no longer grow. The more rapidly dividing the cells, the more easily to be damaged by radiation, slow growing is not good for low grade. The cells in the inner walls of the blood cells, do divde and are the most radio sensitive cells within the brain which are the ones at greatest risk. These cells will be pushed to the limit. External beam radiates a large area of the brain. In clinical trials, they may only want patients that hadnt yet been damaged by other treatments. May get a compassionate waiver to get treatment but not be part of trial. 4 phases regulated by FDAobjective of phase 2 is to show you can provide treatment without damaging patient. Braggs peak or brachytherapy leave behind tumor bed nests. Culture tumor cells and see how they will react to agents before using them. Agents cant cross blood brain barrier many times, maybe put through brain directly instead of through bloodstream? Clinical trials been done for 15 years, but not great results yet, killed many more than helped. T-cel is a great hope, but it is difficult in the brain. Immune system depleted particularly with chemo, there are some drugs that help the body build back its immune system. Chemo agents damage organs, blood stem cells in bone marrow are at riskMD Anderson, UCSF, etcprobably not relevant in this case. Study done by (10 years ago) team gather survival time on 1600 GBM etc patients and looked at every parameter that could effect patient surivial, there were only a few patients whose survival team were effected by their treatment (included standard radiation and chemo agents) Immune agents dont get in brain. Blood brain barrier only in brain and spinal cord, physically made up of andiphilio cells lines the entire circumfrance of the capillary. Series of these short straw sections..they dont fuse to each other, but they but up to each other and make like a seal and physically doesnt allow fluid or other things from the blood stream to get in. In other parts of the body there are gaps where things can get through. If you put something in tumor cavity it will be pass the blood brain barrier and effect brain/spinal fluid. Bulk diffusion can only reach isolated tumor cells through fluid which depends on lots of factors. Can only do damage by ionization, iodine 131 only has a short pathway and probably wont reach tumor beds. Two boron drugs, one is a small molecule that leaks through blood vessels where there is edema in areas surround tumor cavity, you have to wait (some time) to get this to make its way to other areas. If nests get more than 5-6 cells, they damage blood brain barrier angiogenesis (blood supply to tumor) as blood supply is formed, it lacks the barrier, but only during this time. Boron gets in through bulk diffusion & another drug that has active transport to get boron into bad cells through blood vessel wall. Boron drugs are not toxic. Boron activated by nutron, beam effects nothing other than region of interest. Low energy neutrons destroy scalp before they destroy tumor and cause reactions in blood vessels near the surface of the brain. Higher energy neutrons can get through and slow down to react with the boron at a greater depth. Japan doesnt have high energy beams and would use low energy during operation to avoid scalp damage. Now have neutrons with higher energy, but still looking for the ones that wont damage scalp/blood vessels. Dont seem to be the right beam available anywhere at this point. Nurosurgeon @ National Kagawa Childrens Hospital Dr. Nakagawa (hes a Quaker?) in Zencujiju City 01-81-877620885 fax 625384 (check time difference, may want to send him a fax first) President of Society of Nutron Capture Therapy,
Some people associated with UCSF and Livermore that have been working on an accelerator. Not very successful for Felix Cochran he was 3rd patient treated. Would need to come in every few years for treatment because there is a huge volume of these nests and it would be impossible to get them all in 1 treatment. 10to6th boron for cell. Binomial statistics. Cant control radio sensitizer/protector distribution for the brain.

Dr. Peter Chen our Radiation Oncologist

2006-01-04T05:30:00.000-08:00

Name: Peter chen Radiation oncology
Phone: 949-764-4624
Nurse: Nathaniel Joy
Office: Megan
Fax:
Location: Hoag
Date: 12/30/05

Medical history
Physical exam
Neuro exam

After surgery, radiation therapy + temodar is standard therapy.
Options can be tried afterwards.
Daily treatment, make a thermo mask to hold you in same position everyday, so there is a reproducible position that we make sure to treat each time, radiation is not painful, it is a biological effect on cellular DNA, doesnt burn you

Side fx: hair loss in patches (4-5 weeks into treatment) because of age, hair should grow back but no guarantee, fatigue (may need naps in afternoon, sleep more at night) usually goes away but can last 6-8 weeks after
33 treatments almost 7 weeks of treatments about 20 minutes a day
Will be getting 60Gy total, (Regional radiation that treats 2cm margin around original abnormality for 45Gy shrink down to main tumor area for 15Gy = total of 60gy Dosage?)boost hasnt been shown effective to the tumor bed, but will focus more in cavity at the end.

Standard technique to treat larger margin around tumor, toward last phase of treatment focus more in the targeted area.
Long term side fx number of factors in play, depends on if there is a progression of the tumor, anything we can do to halt that will be effective in the end. Effect of radiation on brain can be subtle, some have had trouble with short term memory loss, but it is difficult to measure, may have some difficulty with short term memory and concentration a year out, but not clear if it is from radiation, tumor, other factors?

How many GBM IV patients are being treated here? 3-4 getting radiation now
What is your plan of treatment? Regional radiation that treats 2cm margin around original abnormality for 45Gy shrink down to main tumor area for 15Gy = total of 60gy Dosage?
What does radiation actually do to the cancer cells? Causes damage to cellular dna, cancer cells vs normal tissue have lost that ability to repair themselves so when radiation damages them, they have trouble dividing and then die.
What does it do to the healthy cells? Can also cause damage to normal tissue in same way, but repair of that tissue is much greater which is why we use the dosage that we use so that it keeps up the tolerance of the normal tissue. If we used too high of a dosage we could damage the normal tissue in a way that they couldnt repair themselvesradiation necrosis Very low possibility of radiation necrosis with this dose limit.
What is different about each radio oncologist? Training, experience, some small difference in equipment, Hoag has some of the best equipment available, ability to communicate.
How experienced are you? 35 years old, trained at UCLA, in private practice year and a half, he would set radiation plan and determining doses and doing followup
Who else at Hoag is a radio oncologist? There are 4 in the group. Russell Haffer (oldest), Craig Cox, Dr. Brian Kim What is their experience?
Who is the top dog oncologist at Hoag? David Kline, David Burtzo, Neil Barth
Will it always be administered by you or some one else? Administered by the techs
Do you get referrals from other hospitals? Hoag, UCLA
How many glioblastoma patients have you treated? Several hundred
Can we contact any of them? Yes, go through the brain tumor support group
What are the side effects?
What are the long term side effects?
Gamma knife more risk than benefit on gliomas

* radiation/Chemo
* can radiation only be done once? Somewhat true. Once you give a course of radiation, if the tumor comes back, you have relatively less to gain. It would be different in a recurring tumor, you would have to meet certain criteria to receive this type of treatment. Salvage treatment for recurring.
* radiation can be done same time as chemo - this is common now
* radiation to general area, how much will be treated? About ¼ of brain, 2-3cm margin outside of cavity and boost to the cavity.
* what is radiation necrosis? Kill the cells and mimic tumor growth, gamma knife increases that risk. It is a possibility..should keep dose at 5940-6000 dose total
* what is considered a safe level or radiation (55-60gy) 33 treatments, 200 C dose (1500 one time would be bad, but stereotatic boost would be reasonable at the end 180/200) every week day for 6 weeks
* what are the side effects of radiation? Fatigue, loss of taste, buzzing in ears, will lose hair in area directly effected.
* is there brain damage? Can cause it. Radiation damage can be focal or diffuse, which sometime seen in long term survivors.
* long term effects? Cognitive slowing, short term memory loss.

Will he be radioactive after treatments? No Will it effect people around him? no
Shouldnt do supplements of A,C,E on top of normal multivitamins. Normal vitamin is ok, diet is ok
Told to get blood checked once a week, can we come here to do this? Main hospital
Is there any research going on at this facility regarding treatment of GBM IV?
Immunotherapy (currently open) does require another surgery, take your blood and incubate cells to activate immune cells so theyre ready to kill something and then inject them into the tumor cavity, it is for upfront
Tried increase radiation dose, but limited to healthy tissue reactions (not good)
Leading edge gamma knife procedure that concentrates radiation on areas that need the radiation. Tried before---just to target tumor bed (not successful. Now treat tentacles, pathways are predicable, white matter pathway spread, cause some swelling reactions that help make them more visible in MRIs with higher dosages, but increases risk of radiation necrosis
What kind of clinical trials are going on at this hospital regarding upfront GBM IV? Immunotherapy, Gamma knife (not subjected to randomized trial (Phase 3) yet, currently Phase 2)
- tried on this type of tumor
What other clinical trials are you aware of at other sites for our situation?
There are always clinical trials going on, Dr. Claughsey would be best person to ask about outside trials.
What is the standard of care at Hoag for treating GBM IV? Crainiotomy, radiation + chemo, some are offered gamma knife up front (if they are leading edge pathway of white matter spread)
* next meeting is a simulation (planning and targeting day), fit for the mask and CT scan of head which will be fused with pre-op MRI for targeting (we want them to use UCLAs pre op, not Hoags)
*Mental health. What resources does UCLA have available for patients/families going through treatment? Brain Tumor support groups
Nutrition as part of approach? No proof
Wed like a written transcript of this visit? Yes. Will be in system within a week.

---
phone conversation 01/03/06

* is this considered photon beams, xrays or something else? Xrays are photon
* Is the therapy were using 3D conformal radiation therapy or 2D? 3D
* How many beams will be used? Generally about 5 or 6 beams
* Does the dosage decrease as it reaches tumor area and effect the healthy tissue that it has to go through more than the tumor area? Use multiple beams that conform at central point, so the bulk of dosage happens at conformed point and not as much on the healthy tissue. Similar to beams going through a magnify glass. The single beams dont burn but the conformal ones do.
* Tumor less responsive to later treatments plus it doesnt work very well radiation therapy is the most effect treatment for this disease at this time, it is possible that there could be a resistance to future therapies, but it isnt really known.
* How do we know this is the best treatment in Marks case? Best compared to other alternatives like hospice care, better than older chemo+radiation, showed better on its own
* What is the success rate of this treatment? Averages are quite discouraging, but there are some that have good success rates
* Has it improved in the last 20 years? Conformal radio therapy, other focal techniques, (this case conformal would be the best distribution), tried different fractionation schemes, brachytherapy, particle therapy
* What are the known risks with this treatment? Fatigue, nausea..brain tissue is relatively hardy and part of it is due to the fact that a mature brain even with dna damage they are still able to function, rarely get acute affect of necrosis with this dose
* What are the risks of radiation necrosis of this treatment? Low with dosage were using less that 5%
* What are the known benefits of this treatment? Has the effect of killing tumor, but to cure a cancer, you need to kill every single tumor cell it can be reduced quite a bit with radiation, but cant get them all and tumor does tend to grow back
* Shouldnt we get a pre-radiation MRI to determine most accurate area? Not helpful to get it prior to radiation, preop is going to give best look at where the disease is. You would be underestimating if you took post op because bulk of tumor is gone
* Not helpful to get mris during because it doesnt change plan. If clinical reason like fluid cavities in brain swollen if getting more symptoms (confusion) we would do an MRI to check. Wont see a great effect during radiation, because it takes time to see the effect. If it looked worse wed continue to make it better, if it looked better, wed still want to continue to get the most benefit, MRIS are not a prognostic factor during radiation
* What is currently being done to improve the efficacy of this treatment (experimentally, clinically, etc?) some work been done with different radiosensitizers (temodar) there are ongoing trials with other agents, indication is clinical symptoms if something seen, then change
* Are there any other treatments that we can do with the standard or before/during/after that we should consider? May be clinical trials open, talk to Dr. Claughsey
* Probably Friday or Monday would start radiation
* What is exit dose? Radiation is absorbed as it goes through the body, but not all of it is absorbed and some is absorbed by skin on other side of brain. Might cause hair loss or temporary skin reaction on other side.
* What does this treatment prevent you from doing in the future? Does it preclude other types of radiation (ie external treatments like gamma knife & proton or gliasite or other internal radiation therapies) Doesnt necessarily exclude you, but this method is the best for now. Normal tissues have a tolerance for radiation, you may run a higher risk for side fx if you try another treatment after radiation. It is conceivable, but doubtful that something new and more effective is coming out in the next few months.
* If a tumor shows up in a different part of the brain or body, would standard radiation be applicable on the new tissues? Yes you could do it on new tissues.
* IMRT - same radiation system, delivery is different, will use it in some circumstances of GBM, but more favorable for 3d conformal for this tumor, we do have it here at Hoag, depends on shape of tumor and if located close to optic chasm. It is also xrays (photon). Treatment time is longer than standard radiation.
* IMRT - Supposedly effects less of the healthy tissue vs standard treatment? Complicated cause dose distribution is different, overall can spread low dose regions out. Same dose as standard but distributed differently. It targets same area as standard, but not recommended in this case.
* BNCT - Not at Hoag, problem is getting boron in tumor in appropriate distribution. Technique of focusing radiation. Not as effective on gbm, we can achieve similar effects with radiosurgery
* Proton beams not as effective on GBMs because they cant get the full suspect area
* Gliasite/Internal Radiation - Some internal methods are effective in case of recurrent disease. Some benefit of chemo internal, immunotherapy at hoag, etclocal therapies are not the answer to this disease because the area around the tumor that is effective is in the apparent normal tissue
* Radiation via monoclonal antibodies - Usually used for lymphoma, no antibiody as of yet that targets gbm, there is one that targets a receptor on lymphoma. May be trials for it elsewhere?

nutrition

2006-01-04T05:20:00.000-08:00

We decided that focusing on nutrition would definately be a help in fighting this disease.
We read several nutrition books and internet research and came up with a slew of supplements that were out there that were supposed to fight cancer. Unfortunately, since it was the holidays, it was impossible to get any professional advice because everyone was on vacation. We decided to try taking supplements on our own, but this turned out not to be a good idea and made Mark quite sick for a day. We were finally able to make our first appointment with a nutritionist. We had picked Evan Ross because he came a referral from UCLA and was also a 10 year GBM IV survivor himself. As luck would have it, he too was on leave until the end of January, so we met with his protege...

Name: Anna Brantman/Evan Ross
Location: Cedar Sinai
Date: 12/29/05

Review of medical history
Physical examination: blood pressure-110/70
- saw white coating on tongue which shows that there are some
- body will be able to handle some cleansing, can handle raw diet (30% vegetable,40% grain-millet,barley,quimoa,
- 3-4 cups juice a day, carrot/wheatgrass(1oz a day get to 2oz 3x day)
- Sprouts, mung bean, broccoli, sunflower sprouts, almond sprout
- Legumes (no soy beans) kidney, black, mung, aduki, pinto
- Salmon, cod, sardines
- Some eggs, but not too many
- Get vegetarian home macriobiotic cookbook, soups (grain based) healing with whole foods diet c
- Dill, garlic, onion, basil
- Goat cheese
- Tomatoes, carrots, beets, bell pepper, radish, asparagus, potatoes, cabbage, mushrooms, broccoli
- Apple,papaya,pomegranate,persimmons,grapes,berries (no citrus,pineapple) no melons,
- believe in creating environment that is hostile to cancer
- tumeric/curcumin
- stevia,small amounts of raw/processed honey, maybe not maple syrup
Talked about cell phone usage

Interaction with dilantin, Dr. Ross takes it, take it 2hrs apart from medication
Dosages of supplements
Blood type diet vs cancer related nutrition
- likes the book, but somethings are exaggerated and some things are true
How often are appointments? 1-2x week when in treatment, accupunture will be part of treatment
Can we find some one local? Will look into a contact in our area.
When is Dr. Ross going to be back? End of January.
What should we not do during radiation/chemo? Dont do any supplements 48hours before/after chemotherapy
Will get some recipes from them.
Lactifilus/bactilus-acidofolus for stomach
Antioxides

Overall, we just got a list of foods at this initial visit. Our main goal for meeting with this office is to meet with Dr. Ross (which we actually have to wait a few more weeks to do) and to get an initial guideline about what to eat now. We have since found another nutritionist in Utah who focuses primarily on nutrition for people with brain cancer. We have sent her all of our information and are waiting for an evaluation.

For people still looking for ways to help us out, here's some things that would help:

tried vegetarian recipes that don't contain any animal products or no nos from the list above
gift certificates to Mother's Market & Kitchen or Trader Joes

Thanks for continuing to read up on us :)

all the details from the oncologist

2006-01-03T06:55:00.000-08:00

As promised, here's all the details from the meeting we had with the oncologist last Friday....

We met with Dr. Albert Lai @ UCLA on 12/28/05

Had staples removed
Positive factor that Mark wasn't more symptomatic in the amount of untreated time from discovery to surgery. During exam, still had some sequencing trouble and a bit of memory loss, but everything else looked fine.

We reviewed the pre-op and during-op scans. We were able to see the small area that indicated that there were malignant cells. Looks like it once started as a low grade but over time, transformed to high grade in the core. In the during op MRI, we can see that the main tumor was removed. It looks like he got most of it, but we'll know more when we can get our next MRI after swelling goes down etc.

QUESTIONS ABOUT TUMOR
-----------------------------
* Please confirm tumor type and grade: secondary glioblastoma multiforme IV (features: necrosis, blood supply to that area, evidence of dividing cells)
Fortunately tiny area and looks like most of it removed.

* Are all cells IV or do they start off low-grade? They can start out as IV but ours looks like it was low grade before. Can they change to low grade? Usually not.
* Tumor had necrosis, how long does it take to die? Not known. Does it indicate how long its been there? We think large portion may have been there undetected for years, but dont know for sure. What percent of the extracted tumor was necrosis vs healthy tumor? Hard to say, ???? Is there a significance of the ratio? If large portion low grade, it will hopefully behave more like low grade, but still needs treated as high grade.
* is there anyway to estimate the age of the tumor? Not really
* did the tumor have well developed tentacles, or is it just assumed? Just assumed, because you cant visibly see them. Can see in MRI scan, but it also can underestimateyou need to treat it as if they are there because statistics show that they can continue to grow/develop. Ours had a defined boundary which is better than one that was more diffused. Age/health also positive.
* do we still have tumor sample in case we need it for clinical trials? yes
* Was the tumor specimen tested for the status of the MGMT gene? (gene that allows tumor to heal itself and may be indication of if temodar will benefit patient) our lab is working on this, but it is not available yet. It is very early, cant be done routinely, but may be available in a couple months here.
* how much was removed? Looks like 100% or contrasting and not contrasting areas removed. do we know how much is left? Microscopic amounts left, but cant measure. There is statistically residue, but we dont know for sure without an MRI, right?
* reason that glidal wafers werent used? Not standard of care at UCLA, has a marginal effect and even that data is a little dubious. If there were a clear cut benefit, we would do it. Makes interpretation of future scans really difficult and give unclear results. UCLA really doesnt do that.
* was there anything unique about this tumor or surgery? Dont think so. What about abnormal gyrus in operation report? Just means that there was visual evidence that the tumor was there.
* how serious is my situation? Do I need urgent treatment? Right away. No reason to wait. Dont stress about holidays, get in asap.
* should we get another lung xray/scan?
* what is my prognosis? prognosis of this type of tumor? Very difficult to say. Has lots of features. percentages? Average glioblastoma 12-18months, 50% do better than that, 3-5% chance that you can live over 10+ years or more.
* What is Marks Karnofsky score? 90-100 (this is good)

QUESTIONS ABOUT CENTER/DOCTOR
-----------------------------
* has tumor board met? Were going to meet today, just to find out nuances of pathology, but treatment is most aggressive thing theyll do.
* How many patients with brain tumors are treated by the center/surgeon each year? 250-300 glioblastomas
* Has UCLA ever successfully treated a patient with this type of tumor and grade? If yes, how many success stories? 3-5% over 5 years, there are some over 10
* May we speak with the people you have successfully treated? Yes, we need to get it OKd with them, will call back.
* What kind of treatment options do they offer?
Regional radiation, chemotherapy (temodar) at the same time day 1 of each chemo is a daily oral medication during radiation then later 5days a month, well tolerated, shouldnt have many problems because of health/age, can drop your white count/platelets, blood will need checked every week (can get forms and have it done at Hoag), also give you weekend medication antiobiotic that helps (bactrim DS 2 tablets) to prevent pneumosistic bugs will convert from daily dose, will do this up to 2 years if we get good results (clean scans), can get fatigue during end of radiation, temodar can cause nausea will get kytril and may cause severe constipation and will get miralax to help if needed

Next MRI 2 weeks after radiation completed (about 2 months from now)
Will need follow up visit in a month from now with

Gamma knife more risk than benefit on gliomas

* radiation/Chemo
* can radiation only be done once? In general yes. There are some exceptions maybe 10 years out, it reappears, they would give it again.
* radiation can be done same time as chemo or sequentially? Will be done at the same time
* radiation to general area, not whole head? About ¼ of brain, 2-3cm margin outside of cavity and boost to the cavity.
* what is radiation necrosis? Kill the cells and mimic tumor growth, gamma knife increases that risk. It is a possibility..should keep dose at 5940-6000 dose total
* what is considered a safe level or radiation (55-60gy) 33 treatments, 200 C dose (1500 one time would be bad, but stereotatic boost would be reasonable at the end 180/200) every week day for 6 weeks
* what are the side effects of radiation? Fatigue, loss of taste, buzzing in ears, will lose hair in area directly effected.
* is there brain damage? Can cause it. Radiation damage can be focal or diffuse, which sometime seen in long term survivors.
* long term effects? Cognitive slowing, short term memory loss.
* no known long term side effects of chemo
* how do we know what radiation oncologist to use? How long is treatment?
- Peter Chen @ Hoag (make sure they dont want you to do gamma knife)
* conflicting views on chemotherapy within neuro-oncology community about chemo providing any benefit for IV GBM. What evidence is there that this is a useful treatment? Not much of a controversy anymore, recent article that radtion+temodar is definitely better than radition alone. What kind to use (BCNU (IV sometimes used in recurrent disease, CCNU more tolerated), PCV)Are there drugs that should be taken in conjunction with chemo to increase its effectiveness? Not proven.
* heard that single agent treatments are inferior to combos. what kind of chemo will be used? Will it contain temozolomide (temodar)? Temodar.
* It appears that what may not work for one, may work for another. We believe in a multi agent chemo approach that Duke uses. Also, for instance, if a mixture of chemo is not effective for 2 treatments we would like to try a different combination and so on till the effective one is found since time is so important. We think that if we continue to use the same chemicals, the body resists it whereas it fools the body if different ones are constantly tried. Duke has a rotation of medications, theyre thinking is to prevent resistance but it has problems as well. We start single agent as standard of care then when they arent working, we change (MRI will show progress) After standard now working, have to check factors (ie where it came back), some things tried are with CCUs, Avastin+CPT11(like Duma),
* What kind of long-term effectiveness of the recommended treatment? Weve heard that these standard treatments arent that effective, what is their track record? 40% 2 year survival if MGMT positive, if negative then 20% 2 year survival Newland journal
* when will treatment start? asap
* Can I participate in clinical trials at this center? Dr. Linda Liau. We can, but we need to wait for radiation therapy and post-radiation MRI scan before discussing if he is a valid candidate.
* other trials at UCLA:
- always changing, none open for newly diagnosed, but do have some open for recurrent, may have had one open a month or so ago
* will we be associated with Jonsson Cancer Center? What advantages are there with a center? Cheryl social worker
* after 2 rounds of chemo, will you consider change in composition of chemo? YES, progress told on MRI scans and changes in basic functionality changes.

QUESTIONS ABOUT OTHER THERAPIES
* In view of the rather dismal statistics for conventional therapy, what do you think about aggressive treatments and trials for a otherwise healthy and vital person such as Mark? Have treatments that are effective in some people, not good to take over aggressive approach at the beginning, because not proven. Should start with standard and watch and take options. Clinical trials are not magic bullets and most of them statistically dont work, we are using what is backed by solid data, but not perfect. In this setting, it is what we should do.
* Given that UCLA or any other institution may NOT always have the BEST & LATEST. Will the UCLA medical team advise us of any new and promising procedure, product or treatment and would UCLA help us in obtaining it for Mark? Absolutely. Would the same apply if WE find some promising procedure, product or treatment? YES. Our party line is your party line, no ego involved. Will listen and offer the prescription if you
* if we want to go some where else, what is involved? We will support you in anyway that we can.
* what different phase trials are you aware of and/or recommend? (www.virtualtrials.com)
* kill cells vs prevent growth?
* are there any other systemic treatments that are less toxic than chemo? Unlike other cancers because it is not localized, it stays in the brain, but already somewhat systemic. Local treatments not enough we need to control tentacles. Other localized treatments tried (catheters another operation, hospital stay, we have tried it, data not all out, only done in recurring, not upfront, 96hour infusion still dont know if it works)
* when involved in a trial, and they offer a vs b, how do you guarantee that youll get the option that you desire? We dont do placebo, but may do standard of care. Only issue in phase 3 trials, most of our trials phase I (dose amount) and phase II (efficacy element trying to figure out based on phase I results)
* Is the center involved in current research activities? yes
* do you know about trials other place? Would you recommend them if you did? Yes, a lot of them are similar. Part of nationwide consortium, have multi center

FOLLOWUP
---------
* Customer Service!!! Moving forward, who will be our points of contact within the UCLA medical facility? When may we call them? Go into detail where you have been frustrated with the system to date (surgery moved 4 times, no recall from paging center)!!! Who will be our ADVOCATE within the facility? Call doctor directly Cheryl-social worker
* Will we have full access to medical records to analytically compare weekly results? Yes, must ask
* how often should we get MRIs? PET Scans? Every 2 months, some situations require PET scans, (determine radiation necroisss, active growing tumor)
* After treatment begins, how often will we be meeting to review progress? See in 1 month, will visit after every MRI scan
* how often should we check dilantin levels? 12/21 dilantin 20, check monthly, can get off it, but dont stop now
*Mental health. What resources does UCLA have available for patients/families going through treatment? support groups and social worker contact
* how do we get the films from the mris at the surgery? Radiation film library
* will we be meeting with Dr. Claughsey in future visits? yes
* I want a written transcript of this visit. Yes

Ways to die: sever seizure, pressure on brain stem, coma, stop swallowing, decision made.

1st meeting with oncologist

2005-12-28T17:20:00.000-08:00

We had our first meeting with the UCLA oncology team to discuss pathology results and treatment options. This was a lllloooonnnngggg meeting. As usual, there were delays in getting the appointment to start on time, the cancer center was pretty busy for 7:30am on a holiday week! Once we got the ear of the doctor, he confirmed the diagnosis of a IV glioblastoma multiforme. In the week since we found out about the diagnosis, we setup command central in our home office and had relatives manning computers, doing research, making calls and sending emails to find out as much as possible about treatment options before going to today's appointment. So, because I was preppared for this meeting, we trapped the doctor with us for 3+ hours to get all of our questions answered. When I have more energy, I'll post all the details on the blog. Basically, we're going to start off with the standard treatment that includes regional radiation for 6 weeks paired with chemotherapy and see how that goes. If it doesn't seem to be controlling the cancer, we have an arsenal of other therapies, clinical trials, etc to try. Our next step is that tomorrow (12/29), we are meeting with a nutrionist/herbologist/accupunturist at Cedar Sinai that also happens to be a 10+ year glioblastoma survivior (this is an outstanding survival time BTW!). We feel that nutrition has to play some role in beating this thing, so we're going to check out what he recommends. On Friday (12/30) we have our first appointment with a radio oncologist at Hoag to talk about and prepare for radiation treatments that will begin as soon as we can get them setup. We're also picking up our chemotherapy pills tomorrow and will start them the same day that radiation treatment starts.

the fight continues...

2005-12-23T18:01:00.000-08:00

The pathology reports came in today and confirmed that Mark's brain tumor was malignant. It is diagnosed as a grade 4 glioblastoma multiforme and will require further treatment. During surgery they were able to remove the majority of the tumor, but statistics show that it is impossible to get all of the cancerous cells without taking good brain tissue along with it. The surgeon is satisfied that he removed the most amount of the tumor that was surgically possible. Some parts of the tumor were too close to the speech areas to safely remove it surgically. We have an appointment with an oncologist on Wednesday 12/28 to discuss pathology report, future treatment and possible clinical trials. Common treatment requires radiation along with chemotherapy. We're expected to start radiation in January but are looking into possible alternative treatments as well. This type of tumor is as aggressive as they come, so we're eager to start treatment ASAP. We must wait at least 2-4 weeks after surgery to begin treatment because he has to heal first. With the rate that Mark is healing, we'll be starting treatment in no time. Mark is healing incredibly fast. We were released from the hospital on Thursday and he is walking, sleeping, eating, and speaking normally. It really seems as if nothing is wrong, but we know we have a big fight ahead of us and are ready to take it on full speed. We have a great support team surrounding us with doctors, family, friends, friends of friends, work and church and we're all determined to beat this!!! People keep asking how they can help...here's how:
* keep us in your prayers
* send us food (although we're really picky now and only eat organic foods..sorry)
* keep us laughing (jokes, funny stories, funny movies, etc.)
* keep telling us that you're with us and are part of the team :)

surgery update

2005-12-21T11:14:00.000-08:00

The doctor finally came out to let us all know that the surgery was complete and Mark was doing well. He notified us that they weren't able to get it all because some of it was too close to some sensitive areas of the brain and further treatment would be required. We will also be getting final biopsy results in about a week or so.

As far as recovery, Mark has amazed all of his doctors. He was out if ICU in less than 24 hours and is already walking, talking and eating normally. He is actually supposed to be released either today or tomorrow. A therapist also evaluated Mark and saw no problems with speech and just some slight issues with sequencing. We will be having another full evaluation in a month to determine if therapy will be needed.

closing up

2005-12-19T10:12:00.003-08:00

Just got a call from the OR. They are now closing him up and will do another scan to check for bleeding. He should be in recovery in about 2 hours. A recovery nurse will contact s to let us know when we can see him. I asked about results of a biopsy, but the nurse indicated that the doctor would have to speak to me about those results. He did not have to use any of the blood that he donated.

next update

2005-12-19T10:12:00.002-08:00

Incision was made around 11:30am. Just got an update at2:45pm and they have already removed part of the tumor. They just reviewed a second MRI and are going back in for more. They said he was doing well.

prep work still going on

2005-12-19T10:12:00.001-08:00

We got our first update around 11am. They said that they just did the first MRI to get an initial look before beginning. They have not yet started the actual surgery but will keep us updated. Could be another hour or so after they finish reviewing the scans.

finally in!

2005-12-19T10:12:00.000-08:00

we again were at the hospital at 5am. This time it was actually going to happen. Mark was in great spirits before hand and we were all laughing and joking up until they wheeled him away around 8am. They now estimate a 10-12 hour surgery. I'll update this blog when new info comes in.

deja vu

2005-12-16T13:13:00.000-08:00

Well, we actually made it to the hospital at 5:00am today for a 7:30am surgery.
Mark was psyched up and ready to go.
He was in his hospital gown, had on some sexy circulation stockings and had an IV drip going.
We talked to the anestesiologist and the surgeon and were all set to go.
7:30am rolled around and then 8:00am and then 8:30am....
we found out that there were several trauma cases that came in and filled up all of the ICU beds.
Because of this, they couldn't do surgery, because there were no ICU beds to use for recovery.
We waited around for a few more hours to see if any were going to open up, but they didn't and surgery was AGAIN postponed 'til Monday (12/19) @ 7:30am!! What a let down. The surgeon knew that this was psychologically difficult to get ready, set and then stop so many times. He assured us that he was going to pull strings so this wouldn't happen to us again. So...we're looking forward to a nice weekend and then surgery 1st thing Monday morning. The nice thing is that we've been able to spend some quality time with the family hanging out, rather than just staring at Mark in bed. Mark now has a shaved head and looks pretty suave. Brock shaved his head too in support of Dad (Brock's got a pretty good shaped head as it turns out :)...soooo cute!

Anyway, keep the prayers going, we still need them :)

surgery postponed

2005-12-14T21:18:00.000-08:00

Just got word that surgery was postponed, again!
There were some red line cases that pushed all of the surgeries today and there is a case that is much more severe than Mark's that is high risk and must be performed tomorrow. Mark's surgery is now scheduled for Friday, but we're not sure what time yet. We'll know more tomorrow.

more updates

2005-12-14T16:58:00.000-08:00

Got some more info about surgery tomorrow...
We check in at 11:30am
Surgery is scheduled for 2:00pm

He's supposed to be in the hospital for about 5 days.
Once he is able to walk around on his own, he will be discharged.
Once home, there will be a home health care worker that will visit to assess how he is doing.
They will schedule in-home physical therapy based on their evaluation.
Over time, when they assess that he is able to visit an outside facility for physical therapy, we will.

surgery date moved!

2005-12-12T10:48:00.000-08:00

Late Friday, we were informed that Mark's surgery date/time was moved.
His surgery will now be on Thursday, 12/15 around noon.
Apparently, the doctor had some sort of conference that he had committed to that the office staff was unaware of??!!

Also, I found out about parking.
Parking is $8/day.
There is parking at the hospital near Tiverton entrance and also across the street at the medical plaza.
Parking prices are the same at both lots.

Here is info/map if you're interested:

http://www.healthcare.ucla.edu/shared/maps/#medical-center

more info about the surgery

2005-12-08T14:55:00.000-08:00

talked to the doctor to get some more info about surgery...

Mark was not able to give his second pint of blood on Tuesday because he had a slight fever and swollen glands. We have to monitor his health. If it doesn't improve by Monday, surgery may be cancelled. They will not administer anastesia if he is ill. Mark is laying low and resting trying to keep well. If surgery cancelled, there may be an opening on 12/20, but if not, it could be postponed till after the holidays :/

hospital:
10833 LeConte Avenue, Westwood, CA 90095
310-825-4321
the surgery will take 6-8 hours
Mark will not be awake during the surgery
he will be in ICU the first 2 days and family will not be able to stay
he'll be in an open area with just curtains and other patients and it will be noisy
he probably won't be alert til late in the evening and may not remember anything if spoken to that night
he should be more alert the next day
he will eventually be moved to a more private room on the third day
he should be in the hospital at least 5 days but could be longer
visiting hours are 8:30am-7pm, but not between 2pm-4pm
he will be very tired the first few weeks and will sleep alot
he will be going through some sort of physical therapy where they will come to the house (home health)
they will shave his head an inch on either side of the incision
the incision will be about 8 inches long
after surgery it will have staples
he will not be able to get them wet for 10-14 days while staples are in

pre op starting this Friday

2005-11-29T12:09:00.000-08:00

We're currently scheduling all of the pre op appointments for Mark this Friday 12/2. He will be doing blood tests, giving a pint of blood, a new MRI, other xrays and other tests that need done before surgery. He will also go back on Monday 12/5 to give his second pint of blood. After that, we're waiting for surgery. It will be Tuesday 12/13 @ 7:30am. Fortunately, Mark's family will be here before, during and after surgery for support.

surgery date has been set

2005-11-14T10:12:00.000-08:00

We finally got the results of the blood test and the indicated that there were no signs of infection and no signs of valley fever and all other blood work was normal....so, now that the lungs are clear and we know it is not valley fever, we can now focus on what is in the brain.

We have decided to go with Dr. Martin as our surgeon. We discussed with him the various treatments:

1. gamma knife (radiation)
2. biopsy first then determine if do gamma knife or crainiotomy
3. crainiotomy

We discussed the various pros/cons of the various treatments with several doctors. The gamma knife is less invasive and has a few less risks, but since we really don't know what kind of tumor it is, it is unclear if this is the right treatment or if it would even be effective. We're assuming we know what kind of tumor it is, but we really don't know for sure without testing it. For example, if it did end up being some sort of inflammitory item or something else strange, this would not be the right treatment. We could biopsy it first to determine exactly what it is then we could decide if gamma knife was right or if we just need to take it out; however, there are risks of bleeding associated with this procedure and Dr. Martin and Dr. Kim both suggested that the risks were very close to the same as if you would take it out and biopsy it at the same time. The third choice is what we're going to go with...remove the tumor and biopsy it at the same time.

A surgery date has been set: Tuesday, December 13, 2005 @ 7:30am

What's next:
----------------
11/28/05 - pre op appointment where he'll give a pint of blood, have another MRI, have xrays and other procedures and we should bring all films, etc.
12/05/05 - give 2nd pint of blood for possible use in surgery
12/12/05 - call between 2-4pm to confirm surgery time
12/13/05 - get admitted @ 5:30am, surgery @ 7:30am
hospital stay about 5 days

discuss PET scan results

2005-11-11T08:35:00.000-08:00

------------
We met with:

Dr. Shukla
320 superior #240
Newport beach, ca
949 548-5111

Talking points: discuss PET scan results

Here's the results of our conversations:
The PET scan showed that the left lower lung problem is now just about gone, probably was some sort of pneumonia or mucus plug.
Won't need to do anymore followup on lung issue, it is no longer a concern!
Valley fever is still a possibility for thing in brain, waiting for blood results from that test.
Blood tests showed that there were no signs of an infection and that other blood work was normal.
The PET scan did show a dark spot where the brain tumor is, which indicates that it probably is not a high malignant tumor in the brain since it didn't show too much blood flow in the PET scan.

Whats next?
---------------
Get valley fever and dilantin level results from blood test.
Surgery is likely for removal of brain tumor, we'll probably be setting up an appointment.
We're still reviewing pros/cons of each surgeon.
Mark is leaning towards Dr. Martin who will do a full removal with biopsy to determine where tumor came from.

lung discussion with Dr. Shukla

2005-11-03T06:01:00.000-08:00

------------
We met with:

Dr. Shukla
320 superior #240
newport beach, ca
949 548-5111

Talking points: what is mass found on left lung?

Here's the results of our conversations:
Had any lung problems before? May have had pneumonia when young? Has quite a few sinus problems, especially when surfing. Had some allergies previously, but not really bothersome too much now. Currently has a little bit of phlegm, but not too dramatic.
Eye problems? Recently has had some eye problems focusing on small print, but am also now 43 :)
Any joint problems? Have had trouble in left hip and general stretching problems and recent right knee pain.
Any fevers? Did have 101 on 10/6/05
Dr. Shukla showed us the questionable mass in the lung on the scan. He said that it doesn't look like cancer, because it branches out like it is an infection. It has lots of squigglies which is not cancer-like but could be a fungus infection (i.e. valley fever), parasite or some other kind of infection. A PET scan (functional scan that shows up tumors) needs to be done with CT and fusion, if it is positive and verifies that the tumor is there, we need to biopsy, if negative and we don't still see it in the scan,we won't need to biopsy and would just need follow-up (up to 2 years) to make sure it is not growing. Chance of it being bad news is quite small. Looks benign. Possibly something left over from a previous infection/cold. The pulminologist said that there is so much activity in the brain that it is difficult to see specifc tumors in the brain with a full body scan. There are other PET scans specifically for the brain. He said that the brain tumor may or may not show up in the full body scan. Since it is fairly small, it may not show up.
During our visit, we called Dr. Kim and asked if brain thing could possibly be a parasite. Dr. Kim said that it is possible that it could be a worm/parasite in the brain!
Dr. Shukla also told him that physiologically, the lung thing would not be a problem to operate on brain; however, we definitely need to find out the cause of the lung lesion so we can possibly know more about what could be in the brain.

Questions:

What is involved in a biopsy? If we did need to do a biopsy, it would be easy to do based on spot and would be an in/out procedure using a small needle under local anesthesia.

If it is a parasite, are there any nutritional ways to fight it? No, you would need an anti-parasitic drug

What is involved in the PET scan? You must first call insurance, to get pre-approval because it is a $5000 test.
It is an out-patient test.
It is a full body scan, which is good to see if there is anything else
During the test, we will also take cat scan again so we can see if there is any improvement of what was found in the lung previously, which is possible that it could go away.

Whats next?
---------------
get blood test results from 11/1/05 to see if there are any signs of infection, I will also call and ask them to test the blood sample for valley fever
get pre-approval for PET scan
schedule PET scan as soon as possible
11/10/05 tentative meeting with Dr. Shukla to review PET scan @ 5:15pm (may schedule earlier, depends on when we can get PET scan)

another meeting with Dr. Kim (neurosurgeon #2)

2005-11-02T06:08:00.000-08:00

------------
We met with:

Dr. Kim

Talking points:
Check new MRI/Functional MRI
Show him previous functional MRI as well for comparison

Here's the results of our conversations:
Wants to see how it goes with pulminologist (Dr. Shukla) on Wednesday. Dr. Shukla will look at CT scan and chest xrays and will decide if he can biopsy the lung mass or not.
If we get a diagnosis from the lung biopsy, it may be able to tell us what the type of brain tumor is. If we can't biopsy it or if the results are inconclusive, we'll have to decide what to do about the brain tumor.
If the lung biopsy can verify that it is a tumor and we know what kind it is, gamma knife would be the way to go.
If we can't tell what it is from the lung biopsy, probably best to take it out. This can be done with a needle biopsy first or just take it out. Needle biopsy is a smaller surgery, but there is a likelihood that it will have to come out anyway.
Dr. Kim feels that there is a better advantage to take it out, and would probably need more follow-up afterwards.
We should get another blood test to check for certain infections (Mark did this later that afternoon.)
If blood test says it is an infection, we can possibly treat it other ways.

From looking at the new mri scan, Dr. Kim confirms that he now just sees one tumor and not two and that there is a vein close by.
The tumor is behind the sensory area for the right side of the body.
It is in a critical area, but because it is fairly small, so there are lower risks of permanent side-effects based on its location.
Swelling should go down quickly after tumor out.

Questions:

When should surgery happen? Within in the next 4-6 weeks.

Is the tumor getting bigger or smaller? Size looks the same

Questions about numbers on first functional MRI? Do you see any issues with sequencing? The functional MRI doesnt' show specifics of what the brain is doing (i.e. sequencing)
it only shows the general areas for different functions (i.e. auditory, reading, etc.)

What kind of treatment would be required after tumor removed?
Continue with dialantin? Yes, he would continue for 3 months or more
He will continue to get periodic MRIs after surgery to check for recurrance.
If biopsy confirms malignant tumor, what then? If the tumor is malignant, radiation or gamma knife follow-ups would be required.
If tumor is infection related, Anti-infection drugs would be needed.

What about about chemo impregnated wafers to insert in the cavity caused by the removal of the tumor if tumor is malignant?
These wafers are more of an option for the future, they haven't yet been approved for metastatic tumors.
This tumor is small, it is actually smaller than one of the wafers, so it would not fit in the cavity.

What sort of hospital stay if we go for tumor removal? 2 or more days
What sort of recovery is expected? couple of weeks

What's next:
11/01/05 blood test to check for infection signs
11/02/05 1st meeting with pulminologist Dr. Shukla @ 4:30pm

2nd meeting w/ Neurosurgeon #1 to discuss surgery

2005-10-31T06:45:00.000-08:00

------------
We met with:

Dr. Neil Martin
Nurse: Jennifer

Here's the results of our conversations:
Looked at 1st and 2nd functional MRIs. There is one area near (but not right next to) the tumor that is close to the reading and auditory function areas of the brain.
Looks like a tumor that originated in the brain rather than come from somewhere else; however, the CT scan, did show something on the lung that should be investigated first, before coninuing with the brain tumor surgery plans.
There are basically three choices that we could make about how to deal with the brain tumor:
1. Assume it is a tumor, treat with radiation which could be non-invasive. This is not necessarily the best option, because you can't be certain about what kind of tumor it is, because there is no biopsy to determine.
2. You could biopsy it first; however, there are risks of bleeding involved with this procedure.
3. Go ahead and remove it with a crainiotomy to remove most or all of the tumor.

Dr. Martin's strong recommendation is to go ahead and remove it (#3 - left parietal craniotomoy with biopsy and resection of tumor) with a biopsy first during surgery to check the tumor's nature, then remove it.
Actual surgery would be through a microscope, after the biopsy, the surgeons would use the results to determine more surgical solutions on the spot.
There would be an MRI in the operating room so it could be checked that all was removed before incision closed.
During surgery, Dr. Martin would be present as well as an anestegiologist, chief resident, MRI techs and nurses.

Should get surgery within a month

Questions:

How risky is spot? Not in the most delicate area, and there hasn't been much change in size.
There is a 5-10% risk of some neurological trouble that could effect reading, writing, memory, speech, paralysis of weakness on right side of body.

Would the surgery be performed by a student, or specifically you? The preparation work for surgery (stabilization, incisions, closures, etc.) would
be performed by supervised medical interns, but the actual delicate surgery would be performed by Dr. Martin.

Is the tumor getting bigger or smaller? Doesn't seem to be much change in size in the past month.

Can tumors be caused by parasites (i.e. sushi)? There is no proof of this.

Had Epstein bar at one time, could it be related? Nothing to prove that this is related.

I read that Dialintin interrupts vitamin d metabolism, and could soften bones, should we be concerned? This is an unusual side effect, but should be sure to take vitamin supplements.

Explain elevated ALT/AST? This is common because of the use of the anti-seizure drug. The current levels are expected, but we should be sure
to keep an eye on these levels and get blood test in a month to check again.

What kind of treatment after tumor removed?
Continue with dialantin? You shouldn't abruptly stop, he would stay on dilantin for several months
If biopsy confirms tumor, radiation would be required, possibly chemo with medicaction
Hospital stay - 5 days
Recovery - 8 weeks

What's next:
------------------
11/1 @ 11am Meeting with Dr. Kim (Neurosurgeon #2) to review 2nd MRI and functional MRI
11/8 @ 3pm Dr. Shelka - Pulminologist to discuss findings in lung from CT scan
- UCLA will be sending our first chest xray films back to us through the mail
- after pulminologist says "all clear" possibly schedule surgery for late Nov. or mid Dec.
- Mark will donate blood for himself 2 times before surgery
- blood test to check dilantin and ASL/AST levels

questions about the different CT scan interpretations

2005-10-27T06:30:00.000-07:00

Several people have asked why the Cedar Sinai doc said the CT scan was
clear and the Hoag doc said that there was something on the lower left
lung...

Yep, they both saw the same scan. We feel that the Hoag doctor took
more time to actually look at it though.
The Cedar Sinai doctor just had the disk with the images on it and
didn't say anything about any of the findings.
The Hoag doctor looked at the same disk and reported the concern about
the thing found in the lung.
We also had the radiologist fax us his initial written report which also
indicated something in the lung which coincided with the Hoag doctor's
findings.

2nd meeting w/ Neurosurgeon #2 to review CT scan

2005-10-25T08:20:00.000-07:00

We met with:
------------------
Dr. Kim
Neurosurgeon @ Hoag Hospital, Newport Beach, CA
10/13/05
10/24/05

Here's the results of our conversations:
10/24/05

Reviewing the results of the CT scan, we found that there is something in the left lower lobe of the lung, 2.7x2.1cm but not sure what it is. Don't think it is lung cancer, it could be infection, or a cyst, not really sure so would like Mark to see a pulminologist for more information about what was found in the lung. The CT scan also showed a cyst on the spleen but this is very common and no big deal. The CT scan also showed some degeneration in the left hip joint, but no cause for alarm, probably related to his active life style. We also reviewed a recent blood test and noticed that the following levels were higher than a previous test: glucose serum levels, AST & ALT. Higher levels are expected due to the anti-seizure medication; however we need to keep an eye on the AST & ALT levels. These are related to the liver and if they keep going up, we will need to change the medication. The dilantin levels were low, so the GP's call to up the medication 100mg was right. We should next get a new MRI and a functional MRI as well so we can see if the tumor is getting smaller or not before deciding the next step.

Questions:

Can tumors be caused by stress? no
Had Epstein bar at one time, could it be related? No correlation that we know of.
Could it be a parasite? Usually from undercooked pork, not from sushi.

What's next?:
10/24/05 2nd MRI
10/24/05 2nd Function MRI
10/28/05 @ 2pm, 2nd meeting with Dr. Martin (neurosurgeon #1) for plan of action meeting
11/1/05 3rd meeting with Dr. Kim(neurosurgeon #2) to review MRI results
get another liver function test in a few weeks

Following up environmental causes

2005-10-20T09:15:00.000-07:00

Just starting to follow up on the thought that there may be some sort of
environmental cause.

I did remember some sort of report of toxins in the soil, not in our
immediate neighborhood, but another neighborhood that borders the wetlands.
I round up an article on the situation:
http://www.calcoast.org/news/wetlands041602.htm

I've got a message in to the county to find out when/where/results of
soil tests in our area and request a possible test in our immediate area.

A friend had suggested some other leads that I'm following up on:
National Institute of Health
California Dept. of Public Health
Contacting our Congressman Dana Rohrabacher