I realize medications are needed to treat some diseases. However, most doctors received woefully little nutrition training in medical school. They’ve acknowledged that to me. It’s a travesty. They are taught a lot about drugs and surgeries. (and as we know, many are in bed with big pharma). Numerous studies show that eighty percent of chronic decease can be reversed partially or fully though healthy eating and lifestyle changes, Seventy percent of Americans are overweight or obese. Yet many of them wonder how they got sick.
There is a plethora of information about this online and in books. I highly recommend “Radical Remission” by Dr. Kelly Turner; “How Not to Die” by Dr. Michael Greger, and “Chris Beats Cancer,” by Chris Wark. (I have zero connection with the authors). There are also several great films about this. Among them, “Code Blue,” and “What the Health.” Next month, “The Game Changers” will be released. It’s about lifestyle changes and I’ve heard it’s terrific.
I was diagnosed with CLL in 2010. I was put on Imbruvica in December 2018. This was after years of not being educated about alternatives. My doctors never mentioned healthy eating or lifestyle changes, including exercise. I switched to a plant-based, whole food diet on January 1 of this year after reading those aforementioned books. I never thought I could eat that way for more than two weeks.
I have done it for almost nine months, along with daily exercise. I am now in nearly full remission. And my weight dropped from 205 to 185 (I am six-feet, one inch tall.)
I was surprised to find out how many great tasting alternatives there are to meat. I don’t miss it at all. Also, dairy is very unhealthy, especially milk and cheese. Cheese is inflammatory. I never knew that before reading about it. I had no interest in reading about food until I was put on Imbruvica and had painful side effects.
Research and education helped me. I hope it helps you. Good luck.
Matt has left the forum without clarifying whether he was still taking a reduced dose of Ibrutinib, which he switched to 5 months ago. For the record, Matt said this just 4 days ago in his post asking about copay costs for Ibrutinib : healthunlocked.com/cllsuppo...
"I am on my employer's Blue Cross Blue Shield plan which has a zero co-pay for Imbruvica Other aspects of the BCBS plan are lousy but since Imbruvica retails at over $12k per month, I don't think it's worth switching to Medicare yet. My monthly deduction for my BCBS is $112."
and later:
"I am in partial remission and hoping for full remission before I get screwed by the system. My oncologist wants me to try Rutoxan but my plant-based diet is working wonders and I hope not to need it."
I consider it to be disingenuous to imply that changing to a plant based diet is to some extent responsible for achieving a "nearly full remission" at the time of this post which was a "partial remission" just 4 days ago, with absolutely no information on blood counts, node and spleen sizes, etc, when Matt has been taking full dose Ibrutinib from 19 December 2018 until 5 months ago, when he switched to a 280mg dose: healthunlocked.com/cllsuppo...
For the record, Matt also said 5 months ago that "My WBC count has decreased from 230,000 to 98,000. Every other marker is in normal range." : healthunlocked.com/cllsuppo...
I happened to have Matt's profile open at the time he left our community, so I was able to reconstruct his treatment history. It's a pity that Matt took the actions he did in posting this his last post without clarifying his situation, because this question regarding to what extent we can manage our CLL by lifestyle and in particular dietary changes is of interest to a great many of us.
In the interests of maintaining the quality of posted content in this community, I felt that either this, to me, misleading post needed to be deleted or fuller disclosure needed to be provided.
Well i wish you well and am always happy to see a person do well with there CLL but i do think the drug did help you reach a better place ?
At as 63 year old 6'1" 180# or less male who has never smoked and if i get crazy drink one beer at a party and was still running trail races of 50 miles working my way up to 100 miles until the CLL progressed to much in 2017
The whole health lifestyle did not stop it from happening or progressing it mostly helped me push through the fatigue
That is great news, glad that it worked for you. We had a different experience. My husband decided to get healthy. He lost 75 lbs walked 7 to 10 miles 4 times a week, ate healthy and still on a routine blood test got CLL.
You just never know. We all go through stuff in life to deal with. This is his. I have my own stuff that I deal with daily.
I don’t know many people that don’t have something, but more power to the ones that are free. They should enjoy and Thank God for everyday. We all should because life is too short to waste.🌼
Matt, congratulations on your remission. The cll specialists I see both emphasized to me the importance of a healthy diet and the benefits of exercise to help me stay healthy in my fight with cll. Its unfortunate your doctors never discussed this with you. I think some doctors think eating right and exercising is just a matter of common sense to help with one's health in general.
I don't know that I could ever be on a plant based diet only. It seems reasonable that so long as you are getting all the nutrients you need, that some plant based diets could be very healthy. I favor a diet that includes most all food groups, in moderation. I do think the more processed food is and the more sugars are added, the more unhealthy it could be.
Insofar as the books you list, they are controversial among many scientists and medical doctors for cherry picking facts and failing to follow accepted scientific procedures. Saying I went on a plant based diet ad my cancer went away, therefore my diet cured my cancer is akin to saying every time my rooster crows, the sun comes up, therefore my rooster crowing caused the sun to come up. It confuses causation with correlation.
Insofar as the film, What the Health, it has come under great criticism for exaggerating the dangers of meat and dairy products and for confusing causation with correlation:
The documentary has been criticized by a number of medical doctors,[1][2] dietitians,[3][4][5] and investigative journalists[6][7] for what they describe as confusing causation with correlation, cherry picking science studies, using biased sources, distorting study findings, and using "weak-to-non-existent data".
Everybody has to choose their own path. I am glad you are doing well with your lifestyle changes. While not a fan of pure plant based diets, it certainly sounds reasonable to me it could be a healthy diet. I am more a fan of moderation as I cant give up my guilty pleasures (which ironically this morning included a smoked boudin snack, a snack I would never pretend is healthy).
Your post is a bit vague on what you attribute your remission to, it seems to imply that you attribute it to health style changes instead of ibrutinib.
That's where most of these type books you cite are weak. We have ample proven studies of how ibrutinib effectively treats cll, many clinical trials involving hundreds of people. These books of radical and spontaneous remissions usually present anecdotal evidence, confusing correlation and causation.
All that said, the important thing for you is that you are in remission and that's great. I think your diet and exercise plan no doubt is contributing to your overall health, I just doubt it has much to do with stopping cancer cells from dividing.
Matt, while I would encourage everyone to take the opportunity afforded by their CLL diagnosis to improve their lifestyle, particularly their fitness and diet, I could not include Chris Wark as a valid reference. He has developed cherry picking into an art form, distorting the reason for his cancer cure, which was surgery, not diet, plus he curates his testimonials, removing the testimonials of those who have subsequently died from cancer.
The criticism of “What the Health” aside (and I disagreed with some aspects of it), it cannot be argued that medical schools provide little nutritional training: 19 hours over four years is the average.
Also, no one can change my mind that a plant-based diet isn’t healthier than one including meat and dairy.
I am no diet expert, but I have friends who don’t eat meat for health and ethical issues. I respect their choice. I would not be surprised if there were studies showing plant based diets are the most healthy, it’s intuitive to me that the less you process food and the more natural it is, the better it is for you.
My post was more directed to the part of your post that remains unclear to me, and to books or documentaries that push unproven natural remedies over proven scientific methods to treat cancer.
What was unclear in your post is whether you stopped ibrutinib and attribute your remission to a plant based diet. I think plant based diets sound like they could be quite healthy. I would agree that some natural foods are scientifically proven to help prevent certain cancers. And I think for those with cancer, adopting a healthy diet and exercising helps us fight cancer.
I do not believe plant diets treat cancer, once we have it, in any meaningful way. There is a danger to me that some will read books that promote natural remedies over proven scientific treatments and make poor choices.
I certainly hope I did not offend you in any way, it was not my intent. We both have Cll and are making the best decisions we can to fight it. You are probably making much better diet decisions than me. I can’t give up jambalaya, gumbo and beer. I do try to do it in moderation and even fail at that sometimes. I think your choice of diet is very likely much better than mine. But I do think if you are in remission it’s way more likely due to ibrutinib or some other medicine you took than a dietary choice.
That said, I work hard to be open minded and will modify or change my views when presented with facts that lead to another conclusion. In context of our discussion, facts to me mean studies performed using generally accepted scientific methods, not anecdotal stories.
As cajunjeff said everyone is different. I believe in a "balanced diet" with includes ALL the food groups. Since I have CLL, I am short on protein and have slightly below RBC and platelets after treatment. Your blood cells are made of protein and best way to increase your iron and protein is red meat. The dropping of red meat is the result of studies of heart disease, which is fine for those affected. Assuming that one diet fits all it is at best over simplification. I have had CLL for almost 2 years and I have attended 3 special leukemia diet seminars, so I disagree that doctors are not proactive enough on healthy eating. Wish you well on your journey.
"Radical Remission" is my personal favorite book on this whole subject of non-conventional healing. I have read it several times. It really reshaped my thinking at a crucial time in my own health journey and inspired me to discover and create my optimal path. (I too am on ibrutinib - since September 2017.)
In my own search for nutrition information I discovered "The China Study" by T. Colin Campbell. It's based on published, peer reviewed, scientific studies with around 800 references. The science is overwhelming.
"Everyone in the field of nutrition science stands on the shoulders of T. Colin Campbell, who is one of the giants in the field. This is one of the most important books about nutrition ever written--reading it may save your life." -- Dean Ornish, MD, Clinical Professor of Medicine University of California, San Francisco.
"The China Study is the most important book on nutrition and health to come out in the last seventy-five years....." -- David Klein, Publisher/Editor - Living Nutrition Magazine.
"The China Study is a well-documented analysis of the fallacies of the modern diet, lifestyle, and medicine and the quick fix approach that often fails. The lessons from China provide compelling rationale for a plant-based diet to promote health and reduce the risk of the diseases of affluence." -- Sushma Pallmer, PhD, Former Executive Director Food and Nutrition Board, U.S. National Academy of Sciences.
Because of the science reported in The China Study I have been moving my diet toward a whole food plant based diet. There is not a "cancer diet", "heart diet", "obesity diet", "diabetes diet", etc. Just a healthy diet that affects and helps prevent and reverse them all.
Sweatbee
Good for you! You are on point. I also read “The China Study. A big problem is many meat eaters can’t imagine life without meat. There are so many great tasting substitutes.
We went on a very strict diet when treatment was looming. I don’t know why we didn’t consider doing that when my husband was diagnosed. I don’t know if it helped with the progression, but certainly helped him go into treatment healthier than he had been. I think if we changed our kids diets we may have more of an impact on some of these diseases. When you start reading ingredients, it’s amazing we survive beyond 50.
I have been a vegetarian for thirty years now. A year ago I was diagnosed with CLL stage 4 and had to start treatment ASAP. Luckily I am doing very well on Zanubrutanib. I agree that diet and exercise are very important for a healthy body and mind but I don't think it prevents us from getting these horrible diseases. I am healthy (yes despite my CLL I still consider myself 'healthy' ) exercise daily by walking 3 kilometers and eat a balanced vegetarian diet. I think my lifestyle has helped me to cope with CLL along with Zanubrutanib.
I am interested in reading more on lifestyle and health and will be purchasing the book 'radical remission' I can use all the encouragement I can read to help me on my road to remission.
Good to read that you were able to change your eating habits! Good for you! Congratulations! Not only are you ensuring a healthier you, you are also contributing to a healthier planet and an awareness to the inhumane, needless suffering of animals.
I am 80 and sedentary due to PAD. I quit smoking and drinking wine in 2017. I have CLL/SLL, 13Q 18% on FISH 10/30/17, and due to some larger abdominal nodes. I received 6 B/R infusions from March-August 2018 with intermittent fatigue as the only side effect, still in remission. Having lost 35 lbs on low carb in 2017, I have maintained weight loss for 2 years, with BMI normal, by watching calories i.e. avoiding sugar and processed food. Prior to B/R treatment BP came down from 138/89 to 110/78, heart rate slowed, glycemic index dropped from 125 to 90, oxygen went up. I have discussed this with Emory Winship Nutritionist, and we concur that eating healthy helps all bodily systems maintain, i.e. microbiome, thyroid, kidneys, intestines, heart, vascular, etc. No, diet won't cure CLL, but we believe that it does help the body maintain a healthier status in face of potential co-morbidities, infections, etc., and states of mind and being.
Dear Hidden are you saying you have stopped taking Imbruvica due to bad side effects (made I ask what side effects you had) and are using a healthy non inflammatory diet to heal your CLL? How long did it take you to go into remission?
A post is shown as being from "Hidden" when a member leaves HU. You also lose the poster's profile and record of their past submissions. So while unfortunately you won't now get a reply from Matt, the author of this post, per my reply above to Havemercy, healthunlocked.com/cllsuppo..., 6 days ago Matt said in another post that he was in "partial remission" and was talking about having a zero copay for Ibrutinib, implying he was still taking Ibrutinib. He switched to 280mg per day 5 months ago due to side effects, which were joint pain initially, then tongue sores. He also credited his vegan diet for his joint pain disappearing, while others on Ibrutinib report joint pain disappearing over time, along with other side effects.
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nutritional support/supplements for CLL
Oncological Nutrition Consult
I refused Chemo 2 months ago and I am trying the natural path 
On beta glucans (discussed but not instead of treatment!)
