There are lots of things you can do with food and nutrition. My husband has CLL we were told there was nothing to do but wait and watch. Then 4 months later it transformed into a brain tumor. I was told to take him home and start palliative care. I started him on a crazy juicing program and we went vegetarian and then 90z vegan. He is now totally vegan. We switched Drs. he started chemo right away. There were 3 different chemo drugs. He was hospitalized every 2-3 weeks for one treatment. 4-5 days . His tumor was gone within 4 months. He has had no side affects from chemo. His current oncologist was in shock. He said he fully expected him to lose the use of one kidney and some liver function. Nothing has happened. When I mentioned nutrition and supplements his Dr smiled and said oh that did not help. Hmmmm.... recently we hired a integrated oncologist to oversee our nutrition and supplement program, they were very supportive and agreed all our hard work had paid off. I went on line, read every book I could on alternative treatment. I have a library now of books. There are plenty of things you can do and should do if just to build up your immune system in anticipation of future needs. My husbands current oncologist is publishing his case as it was so miraculous . I doubt he mentions the diet and nutrition. Mushrooms are crazy good for your immune system. The oncologists says your Vitamin D level should be over 70ng/ml. We take 10-15 thousand IU per day. Exercise is super important. There are lots of studies on how it helps cancer patients.
Food and nutrition for CLL: There are lots of... - CLL Support
Food and nutrition for CLL
Hi Abbysmom,
A welcome from our community to you and your husband,
Your husband owes his life to that second opinion! So now to tackle his CLL, with which he should do well on Ibrutinib, given the shared experience of many in this community.
There are a number of Pinned Posts specific to Ibrutinib, which you can find here: healthunlocked.com/cllsuppo...
Do be aware of how some foods and supplements can make side effects on Ibrutinib worse, as covered here: healthunlocked.com/cllsuppo....
and here: healthunlocked.com/cllsuppo...
I love mushrooms, but ironically enough, the beta glucans in mushrooms and other fungi can actually stimulate CLL in a small percentage of us and in general, from my research, immune stimulating herbs and supplements nearly always work by stimulating lymphocyte production - and hence could also worsen our CLL. A friend of mine was actually in a clinical trial assessing to what degree it was possible to boost vitamin D by eating mushrooms that had been exposed to sunlight/UV radiation per this Australian CSIRO research: researchgate.net/publicatio...
The difficulty is we don't know how much our vitamin D is changing, which is where taking tablets is preferable, but then we do need to be guided by blood test results. From what our members have shared, how much vitamin D3 we need to obtain a healthy blood serum level varies greatly from person to person, plus we don't know what the impact of high serum levels of vitamin D is with CLL, which is why Mayo Clinic are currently running a clinical trial. (Mayo Clinic observed that people diagnosed with CLL were more likely to be vitamin D deficient than the general population, but no one knew if that was because CLL depleted vitamin D (so boosting vitamin D might make the CLL worse), or what the relationship was.) High doses of vitamin D increases calcium absorption, which does come with risks per:
drugs.com/medical-answers/s... but
You are so right about the importance of exercise, as I've mentioned here: healthunlocked.com/cllsuppo... and many other places.
There are nearly 5,000 posts on Ibrutinib in our community, per: healthunlocked.com/cllsuppo... but you know where to ask if you or your husband can't readily find an answer!
Neil
Hi Abbysmom and welcome. Thank you so much for this positive post! Wonderful news that your husband is doing so well.I too believe that diet plays an important role in helping to get oneself back on the road to recovery. Diet and exercise. Too bad so few doctors pay so little attention to this. Luckily there is enough information to find on nutrition.
Everything I do qua extra vitamines and minerals I check first with my hematologist and if he is not certain about it he runs it by the lab oncologists. He is supportive of me and the supplements I chose to take. He even encouraged me to take D3.
Once again thanks for sharing your diet experience 😊 It's uplifting and refreshing to read.
Ellen 🌷
Exercise and diet are so important. I respect Aussie Neil's cautions though. So I realise that food is safer than supplements ....but I do take lot of supplements. I hope to see more posts from you Abbysmom. And Neil keep us informed on the downsides.
Abbysmom, I have grown, frozen and added to smoothies my Broccoli sprouts. It all gets so time consuming and haven't done for about 5vmonths. I truly believe its good stuff and I'm going to start again.
Hi Abbysmom,
It’s heartwarming to hear that your husband is now so much better having been given up as a lost case. You must feel so reassured that you have been able to play your part in his recovery. Clearly the traditional treatments have been augmented by sound nutrition and it must be very helpful having an integrated oncologist onboard. I find nutritional advice very difficult to obtain and as a result we can end up taking risks. That brings me to his daily intake of 10-15 thousand IU’s of Vit D per day. That’s mega high bearing in mind 4000 IU is the safe upper limit according to the Institute of Medicine (IOM). Has that level been suggested by the specialist? I’m wondering how it’s working out and if there are any side effects.
I hope your husband goes from strength to strength and that the ibrutinib sustains his recovery long term. You’ll be aware Ibrutinib isn’t without a toxicity profile (I took it but had to discontinue after 15 months) but I remain on Venetoclax. Nevertheless, it’s a highly effective treatment though by choice, I’d have elected for Acalabrutinib.
Best wishes going forward,
Newdawn
Substitute all meat for wild salmon. Wild caught salmon is available canned with no salt added, or reduced added salt. The nutritional value of salmon is multiple. Berries, especially blueberries are the best fruit. Organic frozen vegetable may be more effective then fresh vegetable shipped from distance. Good water is important. Organic no fat plain yogurt, drained over a colander for a couple days is better then cheese. Just walking normally several times a day normalizes circulation, respiration and brain function. I have an indoor treadmill. One can stabilize with hands on bars and watch TV.
Brilliant post- thank you! I agree that diet and nutrition helps enormously with CLL! I’ve made many changes also. I would also be interested in finding an integrative e oncologist- can you pass on his/her name? Anyway, all the best and wish you and your husband continued success and good health. Xxlisa
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