getting out of here soon...sorta

Today Mark got his first taste of physical therapy and was able to walk assisted and do some exercises. His therapist's name is Andrea and she was encouraging and helping him get moving. He'll also be getting to see a speech therapist today as well. Mark also was able to get his "turbin" removed. Dr. Liau did a great job on the incision and it looks pretty clean. The doctor's think he's probably ready to go tomorrow, but not home like we thought! Instead he'll be referred to an acute in-patient rehabilitation facility for 2-3 weeks. There aren't that many facilities that do this type of care so we have a list of about 5 to choose from and some are closer to home...but not much...he already nixed the one that was located in "the hood" ;) So today, we'll be trying to get information and maybe visit to see where the next 5star hotel for Mark might be!

no longer in ICU

Today Mark got to move from the ICU to a private room which is pretty nice with its own bathroom and no other roommates. He's no longer connected to any tubes except an IV for fluids. His speech seems to be getting a bit better and he seems to be gaining alot more control of his right leg. His right arm is still according to Mark, "jacked up" but...there is definitely some improvement. Dr. Liau came to visit and again mentioned that we were waiting for final pathology and readings of the MRI he got to have at 3am!! Physical therapy is most likely going to start tomorrow and we're taking bets to see if he'll get out on either Thursday or Friday. The anesthesiologist from the surgery came to check up as well and had some funny stories of Mark during surgery...apparently he was cracking them up in the operating room when they had to wake him up to test his functions mid-surgery. Apparently he answered some of the questions in Spanish trying to be smart, but Dr. Liau wouldn't have it ;) He then told them all how much he loved them all and once surgery was done, as he was being wheeled to PCU he was exclaiming over and over, "You guys are rockstars!!!"

on the road to bouncing back

Today started off a bit less jovial than yesterday. When Mark woke he saw he had little control over his right side and speech, but didn't remember hearing the part about an expected deficit, so he was a bit confused, sad and angry. Once I was able to connect with him again I helped explain what all went on yesterday and he felt a bit better that he had an explanation of why the right side was quite weak. We've been told that rehab will help him regain some control and so it begins. He now has orders to be moved from the ICU to a regular room, so we're waiting for our private room in Hotel Ronald Reagan ;)

comedy in the ICU

In the ICU, Mark is cracking up the whole ward! He sounds like a drunk comedian and is making everyone laugh. He was just able to move his right leg for the first time and yelled so loud in joy and triumph, it made everyone turn around ;)

out of surgery

We had a call time of 4:45am at UCLA for a 7:30am surgery today. This time we got to be in the brand new Ronald Reagan hospital that has been newly built since the last time we were here. Everything during the checkin process seemed to flow along fine. We escorted Mark up to the preparation area and sat with him while he got debriefed by about 6 nurses and 3 anesthesiologists about what to expect during the operation and answered any questions we had. Mark seemed to have quite the international team, everyone was quite nice and we met players in the surgery from Iran, China, Greece and more! They whisked him off on time around 7:30am to the operating room and he was in good spirits joking all morning as usual. The waiting area was beautiful and seemed quite high tech. They set us up with a restaurant style pager and we parked ourselves by a monitor where you could watch the progress of where patients were in surgery…big improvement from last time where they never told us anything! About an hour in, there was a loud announcement over the speakers that said “Code BLUE, Code BLUE, radiology intervention needed on the 2^nd floor.” It was quite unnerving and sounded alarming and we were questioning what code blue was, but agreed it didn’t sound good. The next thing I knew, some one was asking I come to the phone because the doctor wanted to talk to me! My heart raced as I went to the phone, but was relieved to find out it was just a coincidence that the two announcements happened at the same time. The doc on the other end of the line said that incision happened about a half hour before and everything was going along fine. Whew! I later found out that code blue is related to some sort of cardiac emergency..but fortunately it had nothing to do with Mark!! The next update I got was from Dr. Liau herself. Surgery finished about 1pm and she said it went well. Initial pathology did conclude that it again was a GBM, the tumor was about walnut sized and again had all the characteristics of a stage 4 tumor. She said they did wake him up mid surgery to assess function and he was able to move all of his extremities and talk. She said this tumor was invading on the motor sensory areas and she did have to be a bit more aggressive than last time since tumor growth would affect his motor skills anyway and it was better to resect. She said that she got 90-100% of the visible tumor, but it is likely that he will have deficit on his right side; however physical therapy can help regain much of it. Next step is to wait for final pathology results in about a week. After that it is typically at least 4 weeks before any chemo or radiation plans are made so the situation can be assessed. He will be having a MRI later this evening and will most likely be in the hospital 2-3 nights. He will again be eligible for the vaccine trial since there is new tumor. She mentioned that he may not be able to drive for about 3 months, but depending on how he feels he may be able to go short distances…but no freeways for awhile! Once we see how things go, regular physical therapy arrangements can be made either in hospital or somewhere closer to our home. For now, Mark is in the recovery room and we’ll be able to visit in about 2 more hours.

deja vu

Mark had the functional mri and brain lab mri scans last Friday.  Today we met with Dr. Liau to review the results. The mapping scan shows that the new area is just in front of resection of the old spot.  In the test they mapped the language, motor and sensory areas.  The new tumor does go into sensory area of hand, and Dr. Liau was really surprised that Mark wasn't already showing any symptoms of numbness on  his right hand? She suspects that other parts of his brain may be compensating.  The mapping showed that the new tumor doesn't seem to be too close to the comprehension or language areas.  She said she can surgically remove the tumor, but there is risk of numbness in his hand and possibly weakness. Surgery is a good option because then we'll be able to get it out to help slow down growth, we'd know what it was (scar vs tumor) and would have tissue. There are recurrent trials that can use tissue if we take it out and there is also a gene therapy trial Mark could be eligible for.  Because it has been long enough, radiation can still happen after surgery if needed or instead of surgery.  Some swelling does show in the scans so it will be good to make a decision before it affects in other ways.  Most likely it is tumor instead of scar tissue because of the length of time it has been since the original surgery. A biopsy to find out would be just as risky, so it is better to go for surgery.  This time surgery would be done while Mark was awake. She could also go through the same incision and even smooth out the scar some!  Mark is opting for surgery.  We have a language eval scheduled  on 2/24 @ 11am and surgery will be  3/5.  We still need to schedule the primary doc for surgery clearance (ekg etc) and are getting a blood test today.  We had to sign a lot of papers, but looks like we'll be headed to surgery early next month!

researching the next steps

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

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

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

steady

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

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!

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

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

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

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

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

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

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

All's still clear

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

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

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

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

ho hum...

Scans still unchanged...boring is good!

we've graduated to 10 weeks

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!

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!

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!

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!!

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

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

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

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!

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

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

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

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

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

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!

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...

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

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...

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

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

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!

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

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

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!

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

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!

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

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

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

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

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

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

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

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