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Thread: Dad had glioblastoma almost 2 years ago--should I start him on a ketogenic diet?

  1. #1
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    Dad had glioblastoma almost 2 years ago--should I start him on a ketogenic diet?

    Hi, I am new to this forum and looking for some advice. Here's my Dad's story:

    2011- started having seizures and later, abrupt personality changes (for example, he would start making a lot of jokes and being comical in general, whereas his usual personality is quite serious)
    2011- his doctor started him on Keppra
    Feb 2012- sent to the hospital and they found out he had a stage IV glioblastoma, the tumor was the size of a golf ball if I remember correctly
    Feb 2012- his tumor was removed by Keith Black (I have read Keith Black's book on brain tumors--I recommend it)

    After that, he was on chemo for a while....right now, he is on Avastin and Carboplatin. His personality is normal (his usual personality). However, I've been doing a lot of research on cancer in general, and I've been looking into the ketogenic diet as a complementary approach to brain cancer. I don't know if I should start him on a ketogenic diet, but at this point I figure we have nothing to lose. Also, Dr. Mercola, who is quite famous, advocates the diet for cancer.

    Any experience with this diet? Thanks in advance.

  2. #2
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    Hi Obamaisgreat. Welcome. Sorry to hear about your dad's GBM. If he's on Avastin and carboplatin then I'm assuming there's been regrowth and it sounds like it's inoperable.

    I've heard of the ketogenic diet, of course. We discussed it for my sister but decided it was too harsh and too counterintuitive. We did try it a little at the very end but that was just desperation really.

    I did follow the blog of a guy who tried it after recurrence. It didn't seem to slow down his growth or increase his survival time as far as I could tell from the blog. You can read what he wrote about it at at glioblasted.com.

  3. #3
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    Obama,

    I did the keto diet for about 5 months, then eventually gave up because it was hard to stick to. I know one guy (saw him last night in fact) that has been doing it strictly for a while now, and his recurrent GBM is now completely stable (of course he's also on Avastin and a clinical trials - so hard to pin down to one thing) and he's doing really well health-wise.

    I think it's worth trying it, although an endorsement from Dr Mercola would typically put me off. He uses some really bogus science and has some really poor recommendations (in the spirit of selling his supplements) - but even a broken clock is correct twice a day.
    Nikos

    Glioblastoma IV, frontal lobe - Dx March 2011. Treated with standard Stupp protocol
    Recurrence August 2016 (at 5 years PFS). Surgery August 2016, rechallenge with TMZ with immunotheraphy (nivolumab)

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    Thank you GBMSibling for that blog--I'm reading through it right now. And you're right, he does have a malignant neoplasm as of now. Thanks NikosF for the heads up about Mercola.

    Also, don't know if this is applicable to brain tumors, but my Dad has a lifelong history of refraining from eating any vegetables or fruits--basically, at most, he would get half a serving of fruits/vegetables a week, if that. I read the book "Cancer-Fighting Foods" by Verne Varona, which heavily endorses vegetables and some fruit for fighting cancer. It took me a few weeks to convince my dad to start eating fruits and vegetables--but now, he's been eating around 3 servings of fruits and veggies for almost a year.

    So I don't know if it's a coincidence that he's beaten the median survival time for glioblastoma at the same time he's eating fruits and veggies everyday. It's just the fact that he's almost never eaten a fruit or vegetable in his life that serves as a stark contrast to his eating habits now.

  5. #5
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    Actually, Obama, I think the blogger died in June.

    I convinced my sister to follow a diet that I patched together mainly from the book Anti-Cancer by David Servan-Schreiber. It's also veggie-intensive; more or less the opposite of the ketogenic diet.

    My sister, too, had a longer than average survival time. She lived 30+ months from symptom onset and 28.5 months from diagnosis. I don't attribute this to her diet. But the fact that she never had much in the way of complications from treatment I do think was due to her iron constitution which was certainly strengthened by the diet.

    It would be nice if clinical trials were done on both types of diet, along with standard treatment, of course. But there's never much money to sponsor that type of trial, unfortunately.

    Nikos, how long has your friend been on the ketogenic diet, do you know? Did he start it after recurrence?

  6. #6
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    Quote Originally Posted by GBMsibling View Post
    Nikos, how long has your friend been on the ketogenic diet, do you know? Did he start it after recurrence?
    Sibling,

    He had a recurrence last October - with surgery and started on the keto diet this January - so he's been on it about a year. As an aside he was pretty overweight before, and he told me last night he's lost 120 lbs since going on the diet - so just the healthier BMI is probably a part of his luck so far. I know someone else (Grade III) who's been on it a similar length of time and is doing well as well.

    I asked a NO at the NIH about it, and she said she recommended it, except for the bit about sticking to it. It's very successful in children because it's easier to control their diet.

    Obama - I think you are correct - just eating in a healthy way is a good thing. In fact one of the reasons I ultimately dropped out of the keto diet, was not being able to eat fruit - which I love.
    Nikos

    Glioblastoma IV, frontal lobe - Dx March 2011. Treated with standard Stupp protocol
    Recurrence August 2016 (at 5 years PFS). Surgery August 2016, rechallenge with TMZ with immunotheraphy (nivolumab)

  7. #7
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    Whoa. That's quite a weight loss.

    I kinda wonder about the other health effects of the ketogenic diet... I saw that one longitudinal study that involved the two children with brain cancer if I recall correctly.

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    I have no opinion on it myself, but I asked today a doctor about ketogenic diet. He said it is something which might in general help. But also that it is supertough to stick to it. He said it is something for people that get a kick from knowing they fight 100% all the time against cancer. But he also said that if you are not like this and if you prefer to have also still some normal life where you do not think about this...then do not start on this. And he was right when he said to me that he has the feeling this is nothing for my husband (he loves food and we have a baby and want a normal life). We eat healthy and cook from scratch. We do not eat much processed food. Also keep sugars low. Everyone needs to make his own decision.
    Astro II, resected in 11/2013, 8 cycles temozolomide adjuvant until 08/2014
    recurrence 31.3.2015, high grade in FET-PET, no biopsy, radiation and PC 8 cycles (first cycle was PCV) until 03/2016
    recurrence high grade 04/2016, now on temozolomide metronomic 100mg/day, Avastin biweekly
    otherwise lots of stuff (Dexa, boswellia serrata, drugs agains seizures etc.)

  9. #9
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    Yeah. In fact, Obama, I was thinking... pursuing this diet would definitely be something that would have to be your dad's own wish.

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    Hi, I thought I’d give an update on my dad. His condition seems stable—the malignant neoplasm hasn’t shown any growth. He’s on Avastin and Carboplatin, plus some other drugs. I asked my mom (she takes him to the hospital each time) to ask his doctor about the ketogenic diet—the doc said, “it has not been proven that a ketogenic diet is an effective cancer treatment. However, you can try it.” My dad isn’t willing to cut out enough carbs to reach ketosis, but he’s been eating less bread and rice, both of which he used to eat frequently. He also plays golf 2-3 times a week, four hours each time. That much exercise should be good for him, right?

    Also, I bought a book yesterday called “How to Live Longer and Feel Better” by Linus Pauling. The author talks about vitamin C as a complementary treatment for cancer. Any insight about this?

    I bought the book because I’ve heard about Linus Pauling and his recommendations concerning vitamin C for the general population—also, my dad’s white blood cell count has been pretty low for the past few months (because of the Carboplatin? His WBC counts for the past few months were around 2.8-3.5), and I’ve read that white blood cells have the highest level of vitamin C in the body, compared to all the other cells in the body. And, I looked up which foods have vitamin C, and only guava, strawberries, and some other fruits/vegetables have high amounts of vitamin C. My dad eats fruit everyday, but most of the fruit he eats don’t have that much vitamin C. He also smoked cigarettes for over 30 years (he quit 2 years ago), and smoking depletes vitamin C in the body. So it seems like he’s always had a Vitamin C deficiency. Based on the above, I bought an Ester-C supplement for him last night to take.
    Does anyone have any experience with vitamin C? Thanks for reading.

 

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