follow up with Dr. Martin

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

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.

We’re 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 doesn’t 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*
What’s 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

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

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...

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

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

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

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

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 isn’t more that has been proven at this point that can be done. We don’t recommend gamma knife boosts cause its not proven effective in randomized setting. We have other experimental approaches, but studies on hold and we don’t 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. Don’t think it is a reliable finding. They usually do describe it if it is there.
Most of what we are reading about radiation hasn’t changed much in 20 years and outcomes aren’t better at all either…is 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 wasn’t anything wrong with Mark’s immune system. His immune system wasn’t 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 doesn’t have results. Radiation therapy seems to be the most important and shouldn’t 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. Don’t 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 haven’t been proven in phase 3 studies…no 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 wasn’t impressive. Good resection in Mark’s case…contrasting 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, we’ll switch…we’ll 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 we’re 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%
* Shouldn’t 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 problem…yes. 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 doesn’t build up the immunity, but the tumor does. If we find something that works, we want to stick with it. Hasn’t 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 cell’s 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. Doesn’t seem to be a down side. Still being evaluated
* IMRT no different than standard
* Determine treatment based on tumor’s 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 tumor’s sensitivity to specific drugs? We will be running these on the tissues!

some advice from 3rd party retired doctor

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. Friedman’s 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 peak…proton relies on this to some degree, when charged particles pass through tissue at speed of light they don’t 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) can’t change the mass of the particle, so you don’t have as much control over where it can release its energy. Gamma knife has a narrower beam of xray. You don’t know where the tentacles are…with 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 don’t divide. Objective of radiotherapy is to injur cells so they can’t 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 hadn’t yet been damaged by other treatments. May get a compassionate waiver to get treatment but not be part of trial. 4 phases regulated by FDA…objective 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 can’t 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 risk…MD Anderson, UCSF, etc…probably 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 don’t 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 don’t fuse to each other, but they but up to each other and make like a seal and physically doesn’t 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 won’t 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 doesn’t 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 won’t damage scalp/blood vessels. Don’t seem to be the right beam available anywhere at this point. Nurosurgeon @ National Kagawa Childrens Hospital – Dr. Nakagawa (he’s 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. Can’t control radio sensitizer/protector distribution for the brain.

Dr. Peter Chen our Radiation Oncologist

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, doesn’t 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 hasn’t 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 couldn’t repair themselves…radiation 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
Shouldn’t 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 they’re 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 UCLA’s 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
We’d 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 we’re 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 don’t burn but the conformal ones do.
* Tumor less responsive to later treatments plus it doesn’t 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 isn’t really known.
* How do we know this is the best treatment in Mark’s 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 we’re 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 can’t get them all and tumor does tend to grow back
* Shouldn’t 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 doesn’t change plan. If clinical reason like fluid cavities in brain swollen if getting more symptoms (confusion) we would do an MRI to check. Won’t see a great effect during radiation, because it takes time to see the effect. If it looked worse we’d continue to make it better, if it looked better, we’d 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) Doesn’t 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 can’t 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, etc…local 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

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? Don’t 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

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 don’t 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 can’t visibly see them. Can see in MRI scan, but it also can underestimate…you 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, can’t 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 can’t measure. There is statistically residue, but we don’t know for sure without an MRI, right?
* reason that glidal wafers weren’t 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 doesn’t do that.
* was there anything unique about this tumor or surgery? Don’t 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. Don’t 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 Mark’s 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 they’ll 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 OK’d 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, shouldn’t 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 don’t 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, they’re thinking is to prevent resistance but it has problems as well. We start single agent as standard of care then when they aren’t 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? We’ve heard that these standard treatments aren’t 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 don’t 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 don’t know if it works)
* when involved in a trial, and they offer a vs b, how do you guarantee that you’ll get the option that you desire? We don’t 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 don’t 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.