For those of you who are interested in dietary changes and CLL, I found an interesting clinical case report called "Stable improvement in classical B‐cell chronic lymphocytic leukemia with dietary interventions: A personal experience" by Dr. Pooij and his treating hematologist Dr. Raemaekers. The case report supports dietary modifications for CLL.
The results of this case study are similar to my husband's results. My husband's blood profile improved in only 6 weeks after a change to a Macrobiotic diet, which is a whole foods plant based diet that includes fish and eggs, and excludes alcohol, sugar, other animal proteins, and processed foods. The difference is that my husband's diet is complimented by a supplement protocol and an exercise program.
I corresponded with Dr. Pooij for an update. He stated that the dietary changes he started in 2015 are still working and his lymphocyte counts have improved even further.
I am including a link to the the study below as well as it's reference.
Plooij FX, Raemaekers J. (2020). Stable improvement in classical B-cell chronic lymphocytic leukemia with dietary interventions: A personal experience. Clin Case Rep. 2020 Sep 14;8(12):2948-2954. doi: 10.1002/ccr3.3305. PMID: 33363857; PMCID: PMC7752481. Retrieved on July 17, 2023 from ncbi.nlm.nih.gov/pmc/articl....
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Minou1
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Thanks for posting this. It is a strong encouragement to get back on track with a whole food plant-based diet. After my diagnosis in 2019 I jumped on board the WFPB diet after reading The China Study. I have since eased up and have added more animal protein back into my diet. This study encourages me to not ease up too much.
Hello Sweatbee - I am glad you found it encouraging. Dietary generalizations are exactly that, general, and in my professional opinion and personal experience, there is no one diet that is right for everyone all the time, for all life stages, or for everyone’s biochemical individuality. Our diets have to change as we change.
Thanks so much for sharing this. I don't know that I am Rai 0 or not (platelets and red blood count are much lower but still within normal), but you've given me a boost to eat better. My biggest challenges will be dairy (my son was made out of cheese) and sugar/sweet. I have a dinosaur of a sweet tooth, so this will be difficult. Thanks for giving us all reasons to try. By the way, didn't see wheat, such as pasta, mentioned but going to assume it's a matter of whole grains.
Hi Vlaminck - I hear you. It's a daily struggle for both my husband and I to eat well. Fortunately, its not what we eat once in a while but what we eat every day that matters. I am addicted to wheat and it's the croissants here in France that I crave. Now, I don't have CLL as an incentive like others on this forum do, but just one croissant and the inflammation runs through my body like a wild fire in a spruce tree forest in July. Fortunately, 99% of the time we get through by holding each other accountable and forgiving ourselves for our weaknesses.
Thanks for posting this case study. Whatever the details of the dietary regime, there's a striking correlation between body weight and lymphocyte count. So maybe for some people at early stage CLL calorie restriction is what works?
For me, when I was also at stage 0, temporary weight loss had the opposite effect. After spending weeks at altitude I lost nearly 10% BM while my ALC, having spent >2 years in single figures, jumped into the mid teens and trended up from there.
That's fascinating. What caused the loss of BM at altitude? What were you eating? What stressors were you experiencing? You don't have to answer of course as these are personal questions.
My husband lost 12 pounds within the first 6 weeks of the dietary changes and he was really worried but it leveled off. Total weight loss since diagnosis in April is now 17 lbs (205 lbs down to 191 lbs) at 6'1" tall. Now he is trying for another 6 lbs. Next blood test is early September. Let's see how things go. Only thing we can't change is that he still works full time and this contributes to stress...... Note: he attributes his weight loss to stopping cheese, wine, and bread. How sad when you live in France. Life can be so cruel.
When one goes to a higher altitude, there is increased metabolic stress due to increased oxygen demand, among other things. This would stimulate bone marrow somewhat. I haven't heard of someone losing 10% body mass before, but Murphy's Law says it's possible haha. So caloric needs increase a bit, not just in the attempts to make more RBC's but for increased respiratory rate until hemoglobin increases. The way the body uses fuel changes. And if it was a significant change in humidity compared to "normal" there is also some metabolic adjustment for that.
I was trekking in Nepal for 3+ weeks between 2,800 and 5,600 m AMSL. At the upper end you're getting half the oxygen compared with sea level, so gaining height consumes a lot of energy. I ate more carbs than usual (mainly rice) but it wasn't enough. I regained my usual weight once I got home. This kind of temporary weight loss commonly affects seasonal visitors to the Himalayas.
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