Thank you ALL for your kind words, support, experiences, thoughts, and advice.
Truly appreciate it and I wish you that you all continue to remain in the best of health !
I have a few more questions:
Are there vitamins I should be taking that will help with CLL ?
Is there a better diet, or a proven diet, that helps with CLL ?
Check with your doctor and get tested for B12, folate, VitD3, then work with him to bring your numbers in line.
Try daily exercise... it worked for me! Good diet low in salt, sugar, fats, cook from scratch when possible...
~chris 🇨🇦
Diet & vitamins won't cure CLL (neither will any drugs at this point in time), but keeping the body in optimum health through appropriate diet and exercise will take the bumps out of the journey.
Diet & CLL is a controversial topic. There are many pet opinions on it, but there is now a lot of science available on nutrition and disease. Nothing specific to CLL, but there are principles that can be applied to any disorder. It does take however a lot of research and real life implementation to negotiate the bad habits of the standard modern diet.
I guess we all make our choices on whether it is worth it or not.
Glenn Sabin was able to become CLL free following a diet and supplement regime. Although rare, because I believe the amount of dedication it takes to follow this path, it has happened. There are others I'm sure, they just don't make it into any publication for whatever reason.
Thanks for alerting me to Glen Sabin. I looked him up in old posts.
When I say I don't believe diet & vitamins will cure CLL, I mean that from a living a normal life perspective. I do think however that it is possible to put oneself into a completely therapeutic lifestyle for a long term and the body will slowly turn the CLL on its head, but only if only the prognostic markers are favourable. I don't believe for one moment that a person who is IgVH unmutated and 17p deleted would have much of a chance taking such a route.
Indeed nearly all the reported cases of spontaneous remission in CLL are in those that are IGHV mutated, as is Glenn Sabin. There's around a 1% chance of this happening, which makes it very hard to know whether it is "nature or nurture" or perhaps a mix, that results remissions. Glenn also made keeping fit a high priority and there is considerable evidence of the benefits of exercise in cancer patients. Glenn also had a splenectomy and there's a mouse model study showing mice with CLL had slower progression if they had a splenectomy. So from my research I'd agree with you.
CLL has a well deserved reputation for being incurable, with research continuing to uncover the many ways it hooks into our immune system to make it extremely difficult to eradicate. I suspect that if you were able to compare the cost x time x cure rate of following a diet, supplement and exercise regime, etc with that of approved treatments, the numbers would be in the same ballpark. Unfortunately the vast majority of us don't have the time to try the former.
I've written about why I consider diet alone unlikely to cure CLL in a two part post commencing with this post:
healthunlocked.com/cllsuppo...
In this post I look at the importance of exercise vs diet:
healthunlocked.com/cllsuppo...
The powerful therapeutic effects of exercise:
healthunlocked.com/cllsuppo...
Neil
Thanks for those links Neil, I'll start reading through them.
I think we are pretty much on the same page as far as the hopeful expectation of everyday diet modification is concerned, but I haven't closed the door on putting the body through a therapeutic regime in order for the self-repair organism to do what it can do.
Allopathic medicine works under its own paradigm which differs for the most from utilising the self-repairing mechanisms that are available to us in our bodies. I am finding more and more research into the subject of time-restricted feeding, fasting, autophagy etc. that are major tools at our disposal. It is however a tough road to walk. I have been for short strolls and found some positive results.
seele said:"Diet & CLL is a controversial topic.". I'd say that is an understatement. However, 8 years ago (4 years after diagnosis) I decided to make drastic changes to my diet (to near vegan) and in my particular case it seemed to help. The evidence is purely anecdotal (could be coincidental and not causative), so I rarely make specific recommendations on diet, supplements, etc.(except those related to vegan diets and other specific indications.) That said, I don't think most people who have studied the evidence would disagree that a diet that focuses on "real" food with a skew towards more plants (veggies, fruits, whole grains, and nuts) is a good general direction to pursue. The Mediterranean & DASH diets are two that do that.
IMO, the goal should always be focused on good overall health and not on weight loss (or hoping to cure cancer). However, if you are overweight, a solid WFPB (Whole Food Plant Based) diet will most likely result in significant weight loss (over time) while also lowering your blood pressure, glucose, and inflammation. All without any drugs or supplements. Maybe the best deal in town. (Eat Well to) Be Well - cujoe
cujoe - we seem to be on similar pages being untreated after all these years of CLL and similar eating habits.
I've been a vegetarian for 50 years of which the last 5 have also been dairy-free.
I became aware that dairy is essentially a concentrate of growth hormone designed to grow a 60 lb calf into a 600 lb cow. And as IGF-1 receptors are expressed on CLL cells, I thought that they may possibly thrive on a growth factor like IGF-1.
Some research has been done with solid tumour cancers suggesting the connection of being fed by IGF-1. Time will tell whether anyone has a look at it with regard to CLL.
I don't understand, are you saying that you think that perhaps IGF-1 growth hormone is associated with CLL, or that, IGF-1 will help fuel and add to the growth of CLL ?
No, IGF-1 is not associated with us having CLL, but CLL cells must have IGF-1 receptors for a reason. I expect that they are fuelled in part by both the IGF-1 taken into the body and the IGF-1 produced by our bodies.
I haven't found CLL research on this, other than to say that the receptors are there on our CLL cells.
This just to make you aware that the EU has banned the use of growth hormones in agriculture, so this should not be an issue for us in Europe. With the UK going through Bretix Mr. Trump is already demanding that we drop this ban if we are to get a trade deal with the US.
Jacques
seelel, I'm happy to be in the company of a 50 year vegetarian. And one who has become aware of the dietary issues with dairy. That would seem to be getting you very close to veganism? T. Colin Campbell's China Study was the book that finally convinced me to stop eating meat and dairy.
I also have prostate cancer, which is a much more serious concern for me going forward. And after 12 years of reading/research on cancer, I have come to believe that cancer is fueled by glycolysis (as opposed to sugar), cholesterol, and, most significantly, inflammation. . Recently, I've been looking into microRNAs as genetic factors in cancers and found that the two tumor suppressor mRNAs (miR-15a & 16-1) located at chromosome 13q4.3 (that are missing in me and about 1/2 of all CLL patients) are implicated in PCa. (Surprise! Surprise!)
As for IGF-1, I think you are well informed about it's connection to solid cancers like PCa. And I guess maybe you found the connection to it and CLL here?
Insulin-like growth factor-1 receptor (IGF1R) as a novel target in chronic lymphocytic leukemia
bloodjournal.org/content/bl...
I don't know if you are familiar with Dr. Michael Greger and his very informative website, nutritionfacts.org, but here a short video from there on IGF-1 and cancer. (CLL is not mentioned in it, but it easy to see a possible connection to most any cancer.)
IGF-1 as One-Stop Cancer Shop
nutritionfacts.org/video/ig...
There are also several more IGF-1 videos linked to this one.
Thanks for sharing and I'm sure I'll see you in the HU posts/comments.
Be/Stay Well - cujoe
Yes, I have read both of those and am familiar with Dr. Greger's work.
I avoid the word, 'vegan'. It has too many associations with radical activists. Also I just don't like categorisations. I just think of myself as living on a plant-based diet.
Sorry to hear about your troubled prostate. It's a bummer to have a double whammy.
seelel, I also avoid using "vegan" when I describe my diet and just say, "no meat - no dairy".
As for my two cancers, I come from a family where for two generations we either die with cancer or from it. (Obviously, the former is preferred.) I am fortunate in that I am currently doing well with both cancers. I like to think that my efforts to continually improve my diet & lifestyle have had something to do with that. I also take a LOT of supplements and plant powders, but that is a story for another time. Be Well - cujoe
Ketogenic Diet and CLL
2022 ASH Conference Report: Should MPN Patients Follow the Mediterranean Diet?
Diet options
Whole food Plant based diet reversed cll.
