Blogging in B Minor

I mentioned that we pushed the surgery one week to give us more time to seek a trial that allows me to take advantage of a new vaccine that is showing amazing results in GBM patients (GBM = Grade 4 brain tumors which is what my tumor have now become based on our impressions of MRI).  The vaccine that is our focus is called DCVax-Brain. 

DCVax uses a patient’s own dendritic cells, the starter engine of the immune system. The dendritic cells are extracted from the body, loaded with tumor biomarkers or ‘‘antigens’’, thereby creating a personalized therapeutic vaccine. Injection of these cells back into the patient initiates a potent immune response against cancer cells, resulting in delayed time to progression and prolonged survival.  DCVax-Brain is designed to specifically target Glioblastoma Multiforme (‘‘GBM’’), the most lethal form of brain cancer. DCVax-Brain has entered a Phase II FDA-allowed clinical trial, which is designed and powered as a pivotal trial (i.e. a trial from which the antigen developer may go directly to product approval). Following this trial, the maker anticipates filing a biologic license application (or ‘‘BLA’’) with the FDA for DCVax-Brain.  

Based on trials covering calendar year 2007, the long-term follow-up data are now as follows.  Look, if you have been reading my blog for any length of time at all, you know I’m not someone that holds on to stats but if your journey in fighting a primary brain tumor moves into this territory, you have to look at this data if you are choosing alternative treatments.  Fortunately for me, I have God working in my life so incredibly that my Neuro-oncologist is on top of the world of brain tumor trials, alternative treatments, etc. and we are pulling out all of the stops.  So, go for a 100% resection next Wednesday and follow that up with the DCVax vaccine.

Data so far:

•  8 of 19 patients are still alive (ranging from 24.5 months to 92 months), with median overall survival in all patients of 33.8 months (p < 0.0079) (the “p value” measures the likelihood that the observed clinical effect is due to chance:  a ‘p’ value of 0.0079 means that there is a less than 1% possibility that the longer survival time of DCVax(R)-Brain-treated patients is due to chance);
• 5 of the 8 patients who are still alive show no signs of cancer recurrence, with follow-up time ranging from 41 months to 92 months;
• The median time to progression (i.e. tumor recurrence) is 18.1 months,  compared to 8.1 months for patients treated at UCLA during the same time period (p = 0.00001);
• 90% of patients have surpassed the Standard of Care median time to progression of 8.1 months;
• 84% of patients have surpassed the Standard of Care median overall survival time of 17.0 months;
• To date, 68% of patients receiving DCVax(R)-Brain in addition to Standard of Care have lived longer than 2 years, 42% have lived longer than 3 years, and 26% have lived longer than 4 years (48, 54, 57, 62 and 92 months so far);

So, my humble request?  Please pray that I can be enrolled in this trial.  This trial will yield so many benefits for me and my family.  It will extend my life, allowing perhaps other treatment modalities to come along and further extend my life.  26% of patients living longer than 4 years.  That’s amazing.  And some out 62 and even 92 months – with a GBM?  Unheard of.  So please pray for this and my second request is if you could pray for my surgery and my family – just that everything goes well, that my family has comfort and peace, can garner strength in the Lord and they do not forget He is there – that my young sons are protected and safe, are encouraged.

Thanks to everyone….

God bless

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One aspect of having a brain tumor that is equally devastating is how this diagnosis impacts family members.  My wife and I, of course, had some emotional times together but I will never forget when my wife came to me a few months into this journey and told me how emotionally bankrupt she was.  She felt like she was picking up pieces of our lives together that were just falling apart.  What complicates everything in looking back is that in the beginning, everyone is focused on the patient.  Of course family and friends are there for everyone but there is undeniable concern for the loved one afflicted with this disease.  Makes sense – it’s just human nature.  However, I think what happens in time, unless there is some deliberate focus is other people in the family – wives, children, etc. can be left in the dust to one degree or another.  And don’t get me wrong – this doesn’t mean they are ignored at all, it’s just the balance of focus.

I remember about a week after my surgery, laying on the bed having the most severe seizure I had through all of this and my wife looking down at me with a look of care and compassion on her face but I also saw fear in her eyes.  I was telling her not to allow that vision of me to shape her outlook – as I was in the middle of the seizure – because I knew this was impacting her just as much as it was me.  We were going through this together always will be. 

And what about my children?  Well, my youngest was born 2 weeks after my surgery – how was that for timing and if you’ve been reading for awhile you know the story!  But my oldest – he was affected doubly.  My wife was at the end of a high risk pregnancy and on bed rest and I was preparing for surgery.   I had surgery on June 29th 2007 and my son was born July 13 2007.  All of a sudden, my son went from having two very capable parents to having two parents incapacitated.  We had a nanny and a lot of family stepping up, but what about us?  As I gained strength I spent time with him but as you know, radiation, chemo followed by more – it’s a road and once again, it’s not all about me – this touched him and impacted him and I never lost sight of that.  We made it through. 

Today we spend time together going ice skating, the movies – we have him in soccer and he actually starts into a clinic tomorrow night for 6 weeks that I will be playing in with him.  I’m still on chemo but life doesn’t stop.  You have to keep going.  I get tired sometimes but my wife understands – one day a week or so I have to come home and just lay down.  I have to go to bed early some nights but I try to spend my time on focusing on what I need to.  Today, my son calls my disease my “scar”.  He sees the craniotomy scar and that’s the extent of it.  We told him I had surgery beforehand because of headaches and so forth.  We had a good short book about doctors, nurses, the hospital, where on my body they were operating, etc. so he was well aware.  Anyway….

It’s not all about me.  I can get wrapped up into my treatment – and often times I do when I need to research.  In the beginning prior to my surgery I did a ton of research and my family understood.  I also continue to schedule film reviews and independent research as appropriate.  But I also know it’s not all about me – this disease is about all of us – everyone in my family it touches.  There are plenty of resources out there that family members can avail themselves to but I think the best are other family members.  Stay close.  For us, we have a strong Christian foundation and that drove us through and is our foundation.  Whatever your foundation is, use it to your advantage.  The National Brain Tumor Foundation is another resource.  They can put you in touch with other family members (care givers) who have been through this.  Reach out – it will help you.  You aren’t alone.

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I’ve spent a number of posts speaking of statistics and attitude. I think every brain tumor survivor – and cancer survivor for that matter should give “The Median Isn’t the Message” a good read. The prefatory note by Steve Dunn says a lot about this piece of writing in one sentence: “It is the antidote both to those who say that, “the statistics don’t matter,” and to those who have the unfortunate habit of pronouncing death sentences on patients who face a difficult prognosis.”

The Median Isn’t the Message

Prefatory Note by Steve Dunn

Stephen Jay Gould was an influential evolutionary biologist who taught at Harvard University. He was the author of at least ten popular books on evolution, and science, including, among others, The Flamingo’s Smile, The Mismeasure of Man, Wonderful Life, and Full House.

As far as I’m concerned, Gould’s The Median Isn’t the Message is the wisest, most humane thing ever written about cancer and statistics. It is the antidote both to those who say that, “the statistics don’t matter,” and to those who have the unfortunate habit of pronouncing death sentences on patients who face a difficult prognosis. Anyone who researches the medical literature will confront the statistics for their disease. Anyone who reads this will be armed with reason and with hope. The Median Isn’t the Message is reproduced here by permission of the author.

The Median Isn’t the Message

by Stephen Jay Gould

My life has recently intersected, in a most personal way, two of Mark Twain’s famous quips. One I shall defer to the end of this essay. The other (sometimes attributed to Disraeli), identifies three species of mendacity, each worse than the one before – lies, damned lies, and statistics.

Consider the standard example of stretching the truth with numbers – a case quite relevant to my story. Statistics recognizes different measures of an “average,” or central tendency. The mean is our usual concept of an overall average – add up the items and divide them by the number of sharers (100 candy bars collected for five kids next Halloween will yield 20 for each in a just world). The median, a different measure of central tendency, is the half-way point. If I line up five kids by height, the median child is shorter than two and taller than the other two (who might have trouble getting their mean share of the candy). A politician in power might say with pride, “The mean income of our citizens is $15,000 per year.” The leader of the opposition might retort, “But half our citizens make less than $10,000 per year.” Both are right, but neither cites a statistic with impassive objectivity. The first invokes a mean, the second a median. (Means are higher than medians in such cases because one millionaire may outweigh hundreds of poor people in setting a mean; but he can balance only one mendicant in calculating a median).

The larger issue that creates a common distrust or contempt for statistics is more troubling. Many people make an unfortunate and invalid separation between heart and mind, or feeling and intellect. In some contemporary traditions, abetted by attitudes stereotypically centered on Southern California, feelings are exalted as more “real” and the only proper basis for action – if it feels good, do it – while intellect gets short shrift as a hang-up of outmoded elitism. Statistics, in this absurd dichotomy, often become the symbol of the enemy. As Hilaire Belloc wrote, “Statistics are the triumph of the quantitative method, and the quantitative method is the victory of sterility and death.”

This is a personal story of statistics, properly interpreted, as profoundly nurturant and life-giving. It declares holy war on the downgrading of intellect by telling a small story about the utility of dry, academic knowledge about science. Heart and head are focal points of one body, one personality.

In July 1982, I learned that I was suffering from abdominal mesothelioma, a rare and serious cancer usually associated with exposure to asbestos. When I revived after surgery, I asked my first question of my doctor and chemotherapist: “What is the best technical literature about mesothelioma?” She replied, with a touch of diplomacy (the only departure she has ever made from direct frankness), that the medical literature contained nothing really worth reading.

Of course, trying to keep an intellectual away from literature works about as well as recommending chastity to Homo sapiens, the sexiest primate of all. As soon as I could walk, I made a beeline for Harvard’s Countway medical library and punched mesothelioma into the computer’s bibliographic search program. An hour later, surrounded by the latest literature on abdominal mesothelioma, I realized with a gulp why my doctor had offered that humane advice. The literature couldn’t have been more brutally clear: mesothelioma is incurable, with a median mortality of only eight months after discovery. I sat stunned for about fifteen minutes, then smiled and said to myself: so that’s why they didn’t give me anything to read. Then my mind started to work again, thank goodness.

If a little learning could ever be a dangerous thing, I had encountered a classic example. Attitude clearly matters in fighting cancer. We don’t know why (from my old-style materialistic perspective, I suspect that mental states feed back upon the immune system). But match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer. A few months later I asked Sir Peter Medawar, my personal scientific guru and a Nobelist in immunology, what the best prescription for success against cancer might be. “A sanguine personality,” he replied. Fortunately (since one can’t reconstruct oneself at short notice and for a definite purpose), I am, if anything, even-tempered and confident in just this manner.

Hence the dilemma for humane doctors: since attitude matters so critically, should such a sombre conclusion be advertised, especially since few people have sufficient understanding of statistics to evaluate what the statements really mean? From years of experience with the small-scale evolution of Bahamian land snails treated quantitatively, I have developed this technical knowledge – and I am convinced that it played a major role in saving my life. Knowledge is indeed power, in Bacon’s proverb.

The problem may be briefly stated: What does “median mortality of eight months” signify in our vernacular? I suspect that most people, without training in statistics, would read such a statement as “I will probably be dead in eight months” – the very conclusion that must be avoided, since it isn’t so, and since attitude matters so much.

I was not, of course, overjoyed, but I didn’t read the statement in this vernacular way either. My technical training enjoined a different perspective on “eight months median mortality.” The point is a subtle one, but profound – for it embodies the distinctive way of thinking in my own field of evolutionary biology and natural history.

We still carry the historical baggage of a Platonic heritage that seeks sharp essences and definite boundaries. (Thus we hope to find an unambiguous “beginning of life” or “definition of death,” although nature often comes to us as irreducible continua.) This Platonic heritage, with its emphasis in clear distinctions and separated immutable entities, leads us to view statistical measures of central tendency wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua. In short, we view means and medians as the hard “realities,” and the variation that permits their calculation as a set of transient and imperfect measurements of this hidden essence. If the median is the reality and variation around the median just a device for its calculation, the “I will probably be dead in eight months” may pass as a reasonable interpretation.

But all evolutionary biologists know that variation itself is nature’s only irreducible essence. Variation is the hard reality, not a set of imperfect measures for a central tendency. Means and medians are the abstractions. Therefore, I looked at the mesothelioma statistics quite differently – and not only because I am an optimist who tends to see the doughnut instead of the hole, but primarily because I know that variation itself is the reality. I had to place myself amidst the variation.

When I learned about the eight-month median, my first intellectual reaction was: fine, half the people will live longer; now what are my chances of being in that half. I read for a furious and nervous hour and concluded, with relief: damned good. I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation’s best medical treatment; I had the world to live for; I knew how to read the data properly and not despair.

Another technical point then added even more solace. I immediately recognized that the distribution of variation about the eight-month median would almost surely be what statisticians call “right skewed.” (In a symmetrical distribution, the profile of variation to the left of the central tendency is a mirror image of variation to the right. In skewed distributions, variation to one side of the central tendency is more stretched out – left skewed if extended to the left, right skewed if stretched out to the right.) The distribution of variation had to be right skewed, I reasoned. After all, the left of the distribution contains an irrevocable lower boundary of zero (since mesothelioma can only be identified at death or before). Thus, there isn’t much room for the distribution’s lower (or left) half – it must be scrunched up between zero and eight months. But the upper (or right) half can extend out for years and years, even if nobody ultimately survives. The distribution must be right skewed, and I needed to know how long the extended tail ran – for I had already concluded that my favorable profile made me a good candidate for that part of the curve.

The distribution was indeed, strongly right skewed, with a long tail (however small) that extended for several years above the eight month median. I saw no reason why I shouldn’t be in that small tail, and I breathed a very long sigh of relief. My technical knowledge had helped. I had read the graph correctly. I had asked the right question and found the answers. I had obtained, in all probability, the most precious of all possible gifts in the circumstances – substantial time. I didn’t have to stop and immediately follow Isaiah’s injunction to Hezekiah – set thine house in order for thou shalt die, and not live. I would have time to think, to plan, and to fight.

One final point about statistical distributions. They apply only to a prescribed set of circumstances – in this case to survival with mesothelioma under conventional modes of treatment. If circumstances change, the distribution may alter. I was placed on an experimental protocol of treatment and, if fortune holds, will be in the first cohort of a new distribution with high median and a right tail extending to death by natural causes at advanced old age.

It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die – and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy – and I find nothing reproachable in those who rage mightily against the dying of the light.

The swords of battle are numerous, and none more effective than humor. My death was announced at a meeting of my colleagues in Scotland, and I almost experienced the delicious pleasure of reading my obituary penned by one of my best friends (the so-and-so got suspicious and checked; he too is a statistician, and didn’t expect to find me so far out on the right tail). Still, the incident provided my first good laugh after the diagnosis. Just think, I almost got to repeat Mark Twain’s most famous line of all: the reports of my death are greatly exaggerated.

Postscript By Steve Dunn

Many people have written me to ask what became of Stephen Jay Gould. Sadly, Dr. Gould died in May of 2002 at the age of 60. Dr. Gould lived for 20 very productive years after his diagnosis, thus exceeding his 8 month median survival by a factor of thirty! Although he did die of cancer, it apparently wasn’t mesothelioma, but a second and unrelated cancer.

In March 2002, Dr. Gould published his 1342 page “Magnum Opus”, The Structure of Evolutionary Theory. It is fitting that Gould, one of the world’s most prolific scientists and writers, was able to complete the definitive statement of his scientific work and philosophy just in time. That text is far too long and dense for almost any layman – but the works of Stephen Jay Gould will live on. Especially I hope, The Median Isn’t The Message .

© Stephen Jay Gould

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There is a certain compounding effect of chemotherapy that seems to be taking place the longer I am on Temodar.   I believe I have mentioned before in this blog that at the end of a 7-day “on” period I become much more fatigued and it seems to take me a little bit longer to recover.  It seems to take just a little bit longer as time moves on and at the end of the cycle I feel just a little bit more under the weather.  When this first started to happen, I mistakenly thought it was the “radition recall” phenomena creeping back into the mix that was so difficult to deal with back during October and November.  However, it’s not – it’s just fatigue from the Temodar at the end of each 7-day dosing.  I have read that it becomes a little been harder, I just didn’t think it should happen at this point.  However, most people are on a 5/23 regimen, meaning they take it for 5 days a month and are off it for 23.  So, since I am on the drug 14 days each month and off 14, at this point I have 3 cycles under my belt which is 42 doses.  The 5/23 would put you at 15 doses.  Now the 5/23 is a higher dose but I am just thinking that being on the drug more consistently is having a more consistent effect on my body.

The good news is that my blood work is good.  My white count is down but my overall scoring is good and not in a range where it is a concern.  I have had a number of focal seizures but as always I just handle those as they occur.

That’s it for now.  There have been quite a few people that have emailed me lately with newly diagnosed brain tumors or with loved ones that have been newly diagnosed.  I pray for all of you and my wife and I know exactly what all of you are going through.  There is a shock to this news – in time you surrender and accept it and you attack the problem.  As always, I’m happy to answer questions and provide you with what support I can.  This site also has resources – there are links down the left side under “Brain Tumor Resources” that will find helpful and the “Library” area of the site has a lot of useful documents and information. 

Best regards,

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I came across a very good slide set put together by Dr. Henry Friedman, MD of Duke University Brain Tumor center. At this point in my treatment, because I have what is referred to as “stable disease”, the standard of care is what I will continue with which is my 7-day on / 7-day off Temodar regimen. However, if anything were to change there are a lot of different options out there.

This slide set is 100+ pages long but it’s worth taking a look at. Don’t be intimidated by it – there are statistics in it and there are a lot of diagrams that require you to be a chemist to understand them – so just blow by them. It is a good slide set to have, IMHO, just to be acquainted with options. You can download the slide set here or you can go into the resource library and get it there and peruse the other resources available there at the same time.

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I believe one of the most difficult aspects of being a brain tumor survivor is in staying in today – one of the coping mechanisms if you will. In time, it’s not so much of a coping mechanism. This may be true for any of us in just living life but it becomes increasingly more important if you’ve been diagnosed with any terminal disease. Many of us may have lived our lives this way prior to being diagnosed with a brain tumor. I certainly tried to practice this. The fact is, none of us know what tomorrow holds. All of our days our numbered, it’s just that I’ve been given a number to some extent – at least I’ve been given “parameters” based on statistical analysis involving large numbers of brain tumor patients over a long period of time. Is there validity to these statistics? Sure. Do they apply to me as an individual? Not really.

I’m writing this post because it’s easy to get caught up in the frenzy of “statistics” and I do it from time to time. I read something this morning that sent me in that direction for a brief time. So, I felt it was a good idea to post this for anyone that finds themself doing this as well as a reminder for myself. Regardless of what anyone says, what any resource you read says, you are a statistic of one at the end of the day. For my particular tumor, a grade III oligoastrocytoma (which is a grade III, or malignant glioma), I know people who are 10 years out from diagnosis. Statistics say that shouldn’t be. So, the way an individual responds to treatment is different from person to person. It’s important to realize that and if I find myself wading into the pool of survival rates, I stop myself. The only reason I have is to be responsible and plan for my family (have things in order, such as life insurance, pension plans and the like) – then I am done.

Digressing to the opening topic, staying in today is the key strategy. How easy it is for any of us to travel into tomorrow, next week, next month or even a year or two from now. I can’t go there. And when I do that, I’m not enjoying what there is to enjoy today. I’m preoccupied with tomorrow, I can’t enjoy my wife and children, what today holds and I’m simply not present. The way I look at it is if I’m focused on the past I’m probably regretful about something and I can’t change it. If I’m focused on the future I’m most likely worried and anxious about something and that day hasn’t even come yet! However, if I’m focused on today I can enjoy it, I have influence over my circumstances with God’s guidance and everything is as it should be. Certainly what complicates this and makes this much more difficult is living with a brain tumor. Sometimes you feel like you have a ticking time bomb that can make your life go sideways at any time. Therefore, it’s easy to slip into that flawed thinking that takes you into the future. However, for me (being a cognitive guy!) I refocus and try to stay in today, where I should be and can be comfortable.

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I’m definitely back on track now and it’s such a relief. This weekend was the best weekend I have had in over 6 weeks. It was great because I felt more more myself than I have in so long – even while I was going through radiation and chemotherapy concurrently. Of course I had the break in-between the initial treatment of 4 weeks but second to that, I’m feeling good now. I think I’m becoming more acclimated to the Temodar as well. All in all this is moving in a positive direction. I’m doing a few things that I’ll document here that I think are helping:

Chemotherapy

1. In the evening, I eat dinner around 5 or 5:30pm. This allows me to have something else around 7:00pm if I want – a snack, grapes or the like. Yes, I cheat sometimes and have sweets. Sugar is not good for tumors but at the same time, I’m going to live my life and not shackle myself.
2. I don’t eat anything after 7:00pm. This allows 2 hours to elapse prior the the start of chemo. At around 9:00pm, I take Zofran, an anti-nausea medication that is used to combat the primary side effect of Temodar which is nausea. I take it with plenty of water – 8-12oz.
3. After the Zofran has been given 30 minutes to be absorbed, I take the Temodar and I go to bed.

Rest

Rest and pacing myself is important. On the weekends, I try to take at least an hour nap at some point during the day. At this point, as of today, I can do some things although I’m gaining my stamina back from going through this period of radiation side effects. Over this weekend, I ran errands, I went to the mall, I planted plants out in front of the house and did other things which was fine. When I’m working, I backed off a bit after my surgery. Before surgery, I hammered away 10 hours a day, sometimes 11 or 12. I had to pull back on that. Basically, listening to my body. Rest is important.

Diet and Food

This is my challenge. Sticking to the right foods is hard, particularly when I am really hungry. Eating fish all of the time can be, in a word, boring! So, I am trying to find different and interesting ways to cook it. I have also never been a vegetable eater! Not so healthy!! I eat them but not like I should. My physicals always come out great as does my complete blood work but I need to do better in this area. So, if you read the documentation I put together in the Library section of the site here and if you read any book and Cooking for Cancer, vegetables are important.

The main point and what is important is to eat smaller meals throughout the day. Not to eat a big breakfast, big lunch, big dinner. Snack on things and this seems to help me. Smaller portions. It’s harder to do but it helps.

Water

I drink a lot more water than I used to do. Chemotherapy dehydrates you. I have water with me wherever I go. I drink 6-8 12oz glasses a day if not more. I get a dry mouth all the time. What also helps is sugar-free gum. I chew a lot of this – it helps quench your thirst a bit and just helps with this taste you get in your mouth that is tied to chemo – can’t explain it but it helps.

Supplements

Protect Healthy Cells

Remember, chemotherapy kills cells in your body. The goal of course is to kill the cancer cells in your body (brain tumor) but unlike radiation therapy, chemotherapy doesn’t differentiate between “good cells” (healthy) and “bad cells” (cancerous) cells. Therefore, the following list contains supplements to help protect healthy cells

1. Coenzyme Q10 – may protect the heart muscle from toxic drugs such as Temodar.
2. Antioxidant nutrients – Vitamin C, selenium, mix tocopherols and mixed carotenes – as part of an antioxidant supplement to provide protection from the free radicals used to kill cancer cells (friendly fire). These should be taken only after treatment starts, when cancer cells are vulnerable
3. Green tea contains strong antioxidants, and its tannins may prevent matastasis.
   Brew yourself a cup or two every day.

To Prevent or Slow Metastasis

In brain tumor patients, metastasis is not as much of an issue as it is with other types of cancer. The likelihood of a brain tumor metastasizing to another area of the body outside of the central nervous system is quite low. However, it could spread to the spine or another area of the brain. Therefore, these supplements are designed to prevent or slow metastasis based on my research.

1. The oil in fish has EPA and DHA, which decrease cancer cells’ ability to stick to blood vessels when they try to escape. During treatment, get these fats from fish, not supplements. I have used supplements here – mainly flaxseed capsules because I have trouble eating fish all the time. Again, you’ll have to judge for yourself and do what you can do. I’m in the process of moving more fish into my diet using different preparations.
2. Eat plenty of fiber-rich foods to keep blood sugar levels even. This will help to “starve” the glucose‐hungry cancer cells. Again, sugar is a problem. I cheat from time to time – it’s not easy to cut out all sugar from your diet. Try it. Look at the labels on everything. The key here is to try and minimize it. My oncologist told me a story that made me feel better. Two patients. One of them was “good” but lived his/her life – had some foods sometimes that were sweet – cheated here and there as it were. Another patient had a husband that cracked down – NO sugar, ever. She loooooved chocolate but it was not to be found in the house. The patient who is living life and letting go a bit is still here – the other one isn’t. Does this mean anything? I don’t know. But it’s something that I thought about. Does it mean that we go out and pound a Halloween-sized bag of M&Ms?! Well, I never did before! But the answer is obviously a resounding no.
3. Decrease polyunsaturated fats, which can increase inflammation.

This post ended up being longer than I had planned! If you don’t have a brain tumor I lost you a long time ago. For those that do, I hope this is helpful in some way.

Hope those of you in the US enjoyed your Thanksgiving Holiday…and for everyone else, hope that you are well…

Site Search Tags: chemo tips, chemotherapy, brain tumor, brain tumor resources, my story, temodar, nutrition, diet

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It’s late so this is going to be very quick. Yet another change in the chemotherapy but this is how it is in the world of brain tumor treatment. I had a final set of research studies reviewed today and consensus is to move forward with a 7-day on, 7-day off, 7-day on, 7-day off program using Temodar to complete one cycle. The dose will be double the dose I was taking during the 6 week therapy post-surgery – 295 milligrams. I will be taking Zofran to control nausea and taking Bactram to prevent pneumocystis which is rare but can be life threatening if it develops. As before, I’ll just go in every Friday for a CBC to make sure my blood work all looks ok. It will be of paramount importance to stick to the diet plan. I have a plan that is documented in the Resource Library that is specifically developed to boost your immune system and fight against these problems plus fight brain tumors.

So, tomorrow night I will start the regimen. I have some trepidation about the dose but I also am keeping in mind that when I was on chemo before I was also undergoing concurrent radiation therapy. I will see how this goes.

That’s it for now…

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