2022 ASH Conference Report: Should MPN Patient... - CLL Support

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2022 ASH Conference Report: Should MPN Patients Follow the Mediterranean Diet?

Edalv profile image
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I am glad to see some work presented on the topic of diet at 2022 ASH… I personally embarked on this road 18 years ago when I was diagnosed with CLL, but there was little research done on this topic specifically for people with blood cancer.

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Edalv profile image
Edalv
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AussieNeil profile image
AussieNeilAdministrator

Michele Nadeem-Baker: Does it do anything specifically for MPN patients?

Dr. Fleischman: So that is something that we are – and we are requiring much larger studies to really investigate. We've investigated for our first studies that this Mediterranean diet – MPN patients like a Mediterranean diet. They can follow a Mediterranean diet. And we do have some, at least, initial evidence that their symptom burden went down.

Our next studies will be what's called powered. So we'll have enough patients to determine whether people on a Mediterranean diet have a reduced symptom burden compared to people eating their regular food, specifically, MPN patients.

Michele Nadeem-Baker: From what I saw, it was quite a significant TSS Score, is that correct? For those who adhered to the Mediterranean diet?

Dr. Fleischman: Correct. Yes. And so, because our initial study was not powered to detect a difference, I can't say that there was a statistical difference.

Michele Nadeem-Baker: Okay.

Dr. Fleischman: Because that's just not what we were set out to do. But we were quite impressed that a majority of patients had at least a 50% reduction in their symptom burden, which makes sense. I mean, I know, from my own self, without an MPN. But if I eat well, I feel better. So I think that's a rule for anybody, I guess.

Michele Nadeem-Baker: And what types of symptoms?

Dr. Fleischman: So we did actually look at, with the question of what you're asking, are particular symptoms more responsive to a Mediterranean diet than others? And we could not identify – it seemed to be across the board. We did specifically ask that question. And it looks like all symptoms are, there wasn't one specific symptom that the reduction in the TSS score was attributed to.

:

Dr. Fleischman: So we did actually look at, with the question of what you're asking, are particular symptoms more responsive to a Mediterranean diet than others? And we could not identify – it seemed to be across the board. We did specifically ask that question. And it looks like all symptoms are, there wasn't one specific symptom that the reduction in the TSS score was attributed to.

Michele Nadeem-Baker: Across the board?

Dr. Fleischman: Across, it seemed like-

Michele Nadeem-Baker: So people watching us probably going to go running for fruits, vegetables, olive oil, fish maybe, and beans.

Dr. Fleischman: Yes. I mean, I think that would be a good idea for anybody. I think another very positive aspect is it is empowering the patient to really understand, and I think it is a key aspect. That living with an MPN, or any other chronic hematologic malignancy, their lifestyle choices, and what they choose – how they choose to live – may be as important or more important than the medications that they may be taking. I mean that's my perspective.

Michele Nadeem-Baker: That's a very strong statement. You had mentioned it, so this particular Mediterranean diet and what you're doing, would this also be looked at for other blood cancers?

Dr. Fleischman: So, ideally, yes. I mean my major – ideally, and after we do much larger studies and establish, hopefully, that dietary counseling and particularly, a Mediterranean diet is beneficial for the care of MPN patients. To really have it incorporated into the care of MPN patients, and then expand to other hematologic malignancies. So I would really like to have, one day like we do with diabetes, where dietician counseling is really upfront and an integral part of chronic disease management in other diseases. It should be an integral part of chronic disease management in chronic hematologic malignancies as well.

Later, Dr. Fleischman shares that a Mediterranean diet might prevent myeloid MNP developement, based on mouse models. That's a long way away from slowing CLL in people after they have developed what is still rightly considered an incurable lymphoma, sadly.

Neil

LeoPa profile image
LeoPa in reply to AussieNeil

I suspect that cutting out the junk is at least as important as eating the right stuff. However isn't the Mediterranean diet full of pasta? If it is it can't hold a candle to a proper keto diet IMO. But that is just my opinion so everybody do your own due diligence please 🙂.

lexie profile image
lexie in reply to LeoPa

I was encouraged to adopt the Mediterranean diet by 2 of my doctors. They emphasized black bean or lentil pasta over wheat so there is a move away from traditional pasta to fiber rich higher protein products. Even whole wheat pasta did not make the list. And legume pasta is only for occasional use, at that.

LeoPa profile image
LeoPa in reply to lexie

Black beans and lentils are legumes, no? I don't eat either as they give me kidney pain and elevate my uric acid levels.

Edalv profile image
Edalv in reply to LeoPa

“The Mediterranean Diet emphasizes plant-based foods and healthy fats. You eat mostly veggies, fruits and whole grains. Olive oil is the main source of fat. Research shows the Mediterranean Diet can lower your risk of cardiovascular disease and many other chronic conditions. A dietitian can help you customize the diet to suit your individual needs.” From the Cleveland Clinic. As with any diet it should be adjusted to your particular needs. There is no magic bullet, but it’s a good start…

LeoPa profile image
LeoPa in reply to Edalv

Fruits and grains (whole or not) are a no no for me. I'm a self made dietician 🙂. This stuff is best learnt at home, like coding. No need for formal studies. Just time, effort, critical thinking and perseverance. Having said that, the MD is still better than the SAD for sure.

Edalv profile image
Edalv in reply to LeoPa

Leo, anything is better than the Standard American Diet (SAD). I do a low carb diet, but it’s not Keto. That’s too hard for me to do. A modified Mediterranean Diet is more in line with my needs… lots of fresh vegetables, wild salmon, free range chicken, and some fruits but not too much… few grains maybe once a week at most, and only use good olive and avocado oils.., that’s why I said modified Mediterranean Diet.., peace 🙏

LeoPa profile image
LeoPa in reply to Edalv

Congrats I think that's as good a diet as anybody can hope to maintain indefinitely. Especially if you can do it without occasionally cheating.

mdsp7 profile image
mdsp7 in reply to AussieNeil

But, adopting a similar diet did slow and reverse my tumor burden. I have the data. Other people do as well. Why aren't further studies being done and published? So that people like me can continue to be ignored, or dismissed as outliers, owing to the lack of controlled studies? I find this circumstance very sad. Let's alleviate all the suffering we can by urging people to make small changes in their lifestyle and diet. Those of us who have done this and met with success ought not be ostracized or embarrassed by posts which point out that there is no evidence to back our claims. Do the studies and the evidence will come.

AussieNeil profile image
AussieNeilAdministrator in reply to mdsp7

There's regular evidence from studies and meta-analyses over the past decade or so, showing the Mediterranean diet to arguably be the healthiest diet, so what's the harm in following it, bearing in mind that no single diet suits everyone. There was even a Spanish study showing a lower incidence of CLL in those following what the researchers deemed a Mediterranean diet from participant self assessment pubmed.ncbi.nlm.nih.gov/299...

It noted, with my emphasis; "This study provides the first evidence for an association between a Western dietary pattern and CLL, suggesting that a proportion of CLL cases could be prevented by modifying dietary habits." So it was about reducing risk, not slowing progression and only reported on association, not cause and effect.

See also Does a Mediterranean-Type Diet Reduce Cancer Risk?

ncbi.nlm.nih.gov/pmc/articl...

Note also that the parent post is about myeloproliferative-neoplasms; blood cancers that arise in the myeloid, not lymphoid stem cell line.

patientpower.info/myeloprol...

Neil

MNP cancers come from myeloid stem cells (left) and CLL from lymphoid stem cells (right)
mdsp7 profile image
mdsp7 in reply to AussieNeil

Right, I did notice that Myeloid cell proliferation disorders and not CLL were being studied. I have a friend with CML and in her interest I have looked to see whether green tea and curcumin have been shown to be helpful in her cancer, too, and from what I read, it looks likely. She is worried that eventually her meds will not work. If that time comes where she does not know what else to do, I will suggest she give green tea and curcumin a try, but I would not suggest it while she is in treatment. Who knows what the interaction could be? But as for the efficacy of a mediterannean diet on CLL tumor reduction... I am one data point which says well, it worked for me, and right away. Also, as your chart demonstrates, myeloid and lymphoid cells have a common progenitor, so there are inevitably many processes in common (and some different). (Nice hematopoiesis chart! I audited a graduate class on that once. Very complicated! Lots to know! Aren't our bodies amazing!)

kablea profile image
kablea

I worry about this! I am an advocate of the Mediterranean Diet insofar as it maintains weight and keeps one regular. However, on that diet my iron levels plunged on two occasions and I was quite unwell. I had to include meat, liver at least once a week and add in some black (blood) pudding where I can. I feel much better and my iron levels remain good. Grass fed meat has been the basis of the British diet for 6,000 years! And, by the way, Rome did fall!

MisfitK profile image
MisfitK in reply to kablea

It sounds like you're doing great. Nutrition is probably no more a "one-size-fits-all" than CLL and its treatment paths are.

I also follow a modified Mediterranean diet for myself, b/c when I was diagnosed, my RBC was also low. So, I take a 1/2 iron supplement and make sure I have lean red meat for dinner about every 3-4 days (the time I seem to need to eat it to stay at my RBC level)...

My big overall "mental menu" is fresh fruits and veg (yep, I'm a HUGE fruit person - pineapple will make you live forever) are about 50% of my diet, proteins (fish, white meats, eggs, tofu, beans, peanuts, nutritional yeast, and the mentioned red meat) are about 25%, and everything else (to include my morning fiber cereal and an acre of olive oil since I can't have dairy so I cook EVERYTHING that needs fat with it) is the other 25%.

I've been beating my TTFT time goals, so I figure while I might not be doing the nutrition thing right, I'm not doing it wrong. I'm also maintaining my weight, only dropping about a 2-3lbs/year (and like almost everyone in the western world, that's still very okay for me), so it's another sign to me that it's working well enough - that, and every blood number other than the CLL ones is in the ideal range.

PS - And for those wondering why I'm missing some proteins - allergies. Having no gall bladder (making keto/carnivore/high fat a VERY bad idea personally for me) and allergies makes for a more unique menu plan, but that's another reason why I think ideal nutrition is personal, not universal (except for broad things like "eat less processed food/don't eat a million calories/etc").

Edalv profile image
Edalv in reply to kablea

I also have grass fed beef on occasion, but not too often. We need to find what works for each of us. I am glad you found what works for you particular needs… 🙏

CoachVera55 profile image
CoachVera55

I don’t believe they can find a conglomerate to fund these studies, its no big pay off🤷🏽‍♀️

I agree we need to not follow the SAD diets to make America healthier again before all GMO, Mad Cow Diseases, etc erupted…

I follow the diet from the Garden of Eden, fruits, vegetables, grains, seeds & nuts but I will have fish occasionally & unfortunately an unhealthy consumption of chips or popcorn. I just believe that Nutrition & Consistent Exercise is the foundation for good health plus following the 8 Laws of Health!

Experts say 80% Nutrition so that’s paramount to preventing & controlling disease! Exercise may be just 20% for physical health but its at least 50% of my mental health as I realized during this BTKI journey when I could not exercise.

8 Laws of Health
Edalv profile image
Edalv

Over the years, I developed an insight on what my body needs for nutrition, as I get older I realize that my body can’t handle eating for pleasure anymore. I know that it is not easy in social situations, but I try to make the best choices I can in those situations. We try to plan our meals a day ahead to avoid having to improvise the next day. Over time we develop a routine that works for us, as long as my blood count stays stable it’s worth the effort…

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