Anyone know about this fasting and CLL?

[Research123]

I came across this. Anyone any thoughts on this or know anything new? It's about fasting mimicking diet improving the effects of treatment

gero.usc.edu/cll/#:~:text=P....

[lankisterguy Volunteer]

Hi Research123,-

As I'm sure that you know, many substances show significant kill rates on CLL cells in vitro, and once they are tested in mouse models or in vivo, the results are very different.

The medically trained folks make comments about protective environments in germinal centers, lymph nodes, etc.

-

Here are the results of the 40 previous times that fasting was discussed on this forum:

healthunlocked.com/cllsuppo...

-

BTW- if you correct the spelling in your title from "abt" to about, then the "Related Posts" box will likely show some of the above 40 postings.

-

Len

[Research123 in reply to lankisterguy]

Thank you that was helpful

[cajunjeff]

It would be great if some sort of fasting helps our cll. And as Len points out, fasting as a treatment strategy had often been discussed on here.

I hope they get some trials with cll and fasting up and running, the more options we have the better.

That said, it doesn't sound that encouraging to me. They are crowd funding their study, not a good sign they they have enough funding to see this through.

And without even naming the cancer drugs they write:

Our initial in vitro research using mouse CLL cells found that a combination of three common cancer drugs, which when given with dietary restriction, succeeded in killing 100% of the CLL cells. This is a very promising result.

As Len points out, in vitro means in a test tube. I guess what they are claiming is they put three cll unnamed cancer drugs in a test tube with some cll mouse cells after they fasted the mice? What were the drugs? FCR? Ibrutinib? Venetoclax? I could add peanut butter to these drugs and they will kill cll cells in a test tube. And I suppose if I starve cells in a test tube, they will die too - good cells and bad cells.

The "article" itself is really just a crowdfunding page.

All that said, I will keep an open mind and be delighted if it works. It does appear there are a few legit ongoing studies involving the impact of fasting and cancer, hopefully these studies will yield good results.

Color me skeptical as of now. People have been fasting for religious and health reasons for thousand of years, and its benefits are debated every day. Few mainstream doctors suggest it for any illness. Here is wiki excerpt on fasting:

Although practitioners of alternative medicine promote "cleansing the body" through fasting,[13] the concept is quackery with no scientific basis for its rationale or efficacy.[100][101]

During the early 20th century, fasting was promoted by alternative health writers such as Hereward Carrington, Edward H. Dewey, Bernarr Macfadden, Frank McCoy, Edward Earle Purinton, Upton Sinclair and Wallace Wattles.[102] All of these writers were either involved in the natural hygiene or new thought movement.[102] Arnold Ehret's pseudoscientific Mucusless Diet Healing System espoused fasting.[103]

Linda Hazzard, a notable quack doctor, put her patients on such strict fasts that some of them died of starvation. She was responsible for the death of more than 40 patients under her care.[104][105]

In 1911, Upton Sinclair authored The Fasting Cure, which made sensational claims of fasting curing practically all diseases, including cancer, syphilis, and tuberculosis.[106][107] Sinclair has been described as "the most credulous of faddists" and his book is considered an example of quackery.[107][108] In 1932, physician Morris Fishbein listed fasting as a fad diet and commented that "prolonged fasting is never necessary and invariably does harm".[109]

There is no scientific evidence that prolonged fasting provides any significant health benefits.[103] Negative health complications from long term fasting include arthritis, abdominal cramp and orthostatic hypotension.[110]

en.wikipedia.org/wiki/Fasting

What is ironic to me is that proponents of natural medicine are those most likely to promote fasting. How is depriving our bodies of food natural in any sense of the word?

[Research123 in reply to cajunjeff]

Thank you that was a good analysis. Yes crowdfunding without even saying what the drugs are sounds like a money making operation.

[Splash24 in reply to cajunjeff]

They are not talking about "long term fasting", and fyi, the FMD-Prolon, was discovered by using it along with chemo etc, (thats not exactly being proponents of natural medicine) as it rendered the cancer cells more vulnerable, thus enabling the chemo to be more effective, I would suggest if anyone wants more detail and up to date information, look deeper into the work being done at the University of Southern California and Longo. To compare the cutting edge work at USC to what went on in 1911, really? Your last 2 referances # 103 and #110 were from 1983 & 1984.......close to 40 years ago? I entered my CLL by making an effort to make myself as healthy as possible, as always, do your research and make a decision that is right for you.

[cajunjeff in reply to Splash24]

I agree, we plot our own course. I have discussed fasting, green tea and other natural remedies wit my physicians at MD Anderson. I was told to drink green tea if I liked the taste, but that it would not have any real impact on my cll. I was told fasting was not a good idea and potentially dangerous. That is the same advice I found from the American Diabetes Association.

Longo has some interesting theories on fasting, but its telling he has to crowdfund studies. If studies show fasting helps cll and true cll doctors start recommending it, I would most certainly consider it.

Have you discussed fasting with your cll doctor? Is he or she recommending it for you? Just curious, I always try to keep an open mind.

[Splash24 in reply to cajunjeff]

I asked my Hem. (who has a large number of Cll patients) about, my numbers reversing (I am still on W & W), not bouncing around but edging down, and he told me that he had not seen this before, on a consistent bases, was fascinated by it, but that is about as far as it went at this point, also understand until my fasting I had never had 1 blood test that was lower that the one before it....for 6 straight years. I have no illusions about where I am heading, I am just trying to stall it as long as I can, in hopes that the drugs will continue to improve. In terms of Prolon, that is a non-profit, they have made no secret of the fact that they need to raise money for their studies. I will paste the news paper article that got me intererested, you might find it interesting, in laymen's terms which is what I need! What they disovered is that normal cells have a protective switch on them, when the body is without food, they are protected, but a cancer cell does not have the same qualities, and it becomes more vulnerable to the treatment, ie chemo, I think I have that right! Anyway good Luck To You!

nationalpost.com/health/fas...

[cajunjeff in reply to Splash24]

Good luck to you to Splash and Its great to read you are doing well. I do take from what you have written that you are doing your fasting on your own and not upon the recommendation of your cll doctor.

Fasting theories to treat as the one you link to have been around for a very long time. I lack the scientific training to have my own opinion on them and rather rely on the advice of my cll doctor, and other cll doctors, for my treatment plan.

Those doctors do have the scientific training to have valid opinions on fasting and such. They do not recommend fasting.

So if I have all the top cll experts on the one hand who do not recommend fasting to their patients, and a doctor who has yet to be proven views on the other, I'll go with the cll experts. While there are dangers with fasting, I think it can be done safely for some and I don't see much harm in it.

I think this is a great place to share stories and ideas about fasting and such. In some cases where we have people so firmly believe in fasting that they recommend it to others, which is not what you did, I think it is important to make it clear that fasting to fight cancer is controversial and not supported by most true cancer experts.

[Splash24 in reply to cajunjeff]

canjunjeff, yes you are correct, I am doing this on my own, I think the science is probably too early for CLL docs to be on board, I am aware of 3 other CLLers that have had similar results to me. Also I have read there are some docs that deal with breast cancers that are seeing results and it is gaining some traction there. I initially did water only for a few days.... that is not for faint of heart .... the FMD is no picnic but much easier and safer than the water only! If any others on here are using it, I would like to hear any results.

[AussieNeil Administrator in reply to Splash24]

Hi Splash,

Further to your discussion with Cajunjeff, I would caution that you need to be very careful about taking non cancer specific research and applying it to CLL for two, very good reasons:

1) We recently learned that CLL relies on lipids for energy, not carbohydrates and thus in situations where you change the availability of cellular energy sources, CLL cells may survive better than healthy B-cells. See: healthunlocked.com/cllsuppo...

2) We are gradually learning that the distribution of CLL cells between nodes and blood supply can be influenced. BTK and PI3K inhibitors block the signals encouraging cellular adhesion of CLL cells within lymph nodes, which is why you usually see a peak in ALC for a few weeks to months after starting on Ibrutinib and Idelalisib, etc. Cannabinoids have been found to do the opposite, encouraging CLL cells to migrate from the blood, into the nodes. Presumably other factors can also influence CLL tumour distribution, by modulating the signalling chemokines involved.

Bottom line is that you need to somehow assess changes in your total tumour burden, not just changes in your lymphocyte count. You want to be sure that your bone marrow infiltration is stable or improving by monitoring for improvements in your platelet, red blood cell/haemoglobin, neutrophil and other white blood cell counts as well as a looking for a reduction in your lymphocyte count, spleen and node sizes.

Neil

[Splash24 in reply to AussieNeil]

Neil, with all due respect, I have been at this for 11 years now, and have done boat loads and I mean boat loads of research on ALL of my bloodwork and 2 bonemarrow biopsies, don't judge my knowledge based on what I post. I work full time and have a couple or grandchildren I follow around. I owe it to folks on here to share my experience, never did I suggest anything but my own situation, which has greaty improved, I fully understand that does not fit with what your idea of what might. Maybe there is something that folks can extract, maybe not, but I assume all are adults and have the ability to make the decision for themselves. This probably a good time for me to move along.

[Blueish in reply to Splash24]

Hi Splash 24

Identical reaction from my Hem and yours.

My WBC had been on a constant increase for 3 years and then, about 2 years ago I started intermittent fasting and a Mediterranean diet tweaked for lower than usual carbs.

Luckily red wine is an essential component of the Mediterranean diet.

WBC has almost halved in the meantime, every test slightly better than the previous one.

When I first started IF and new diet my aim was only to delay treatment, and I didn't care about how much, just wanted an extension.

I no longer care about published research, stats, or splitting hairs on why IF, diet and lifestyle changes don’t work.

THEY WORK FOR ME.

May your improvement continue always!

[Research123 in reply to Blueish]

I tried it and numbers went right down then jumped up again, but haven't been doing much fasting recently so I'm getting back into it. What's your fasting regime?

[Blueish in reply to Research123]

I have been on One Meal a Day for a year now. Started with 18 / 6 almost 2 years ago, and saw good results immediately. I then slacked quite a bit and the ALC increased but not back to the previous high level. Maybe OMAD isn't for everyone, especially from a social point of view, i sometimes give myself a little slack at birthdays, social events, etc probably once a month or two? I am convinced that a 18/6 coupled with a low carb Mediterranean diet, moderate exercising and good sleep would give good results for most of us. Key I believe is keeping insulin and inflammation levels down, whatever one does in that direction will be beneficial. I am due for tests in April, curious to see which way it goes.

[Research123 in reply to Blueish]

I tried fasting, then missed breakfast (near 18/6) and serious 5 day fasts + low carb vegan diet but lost too much weight - I'm a burner. So now I eat regular times but am trying some more long fasts. I'm wondering what's best, intermittent fasting or plain fasting, as I guess they both help?

[Blueish in reply to Research123]

Interesting, thank you. I think I also may be a bit of a burner, so although I only eat once a day , I reckon I eat a lot since my weight has recently stabilised. I have never done a longer than 24 hrs fast. And right now since the blood tests have been improving I have no incentive to try harder 😃Have dropped in weight from 91 to 80 kgs with all this IF, so I don't want to subject my body to longer fasts. In my case it seems that the daily IF is working. However I can't be totally sure since there may be so many other factors at play. The diet is probably important. One cannot keep insulin down with sweets and white bread and there are foods I eat daily that are likely strong anti-inflammatories . Then exercising, cold showers, i don't know exactly which of these has the largest impact but I am willing to throw everything at it.

[Splash24 in reply to Blueish]

Glad to hear this, I know of 3 others with the similar results! I have been at this for 3ish years now and my numbers have stayed down! Good Luck To You! Keep me posted.

[cllady01 Former Volunteer]

The latest report this group has for CLL is 2015? There are no standard therapy for CLL?

'The American Cancer Society’s estimates about 14,620 new cases of CLL and about 4,650 deaths from CLL in the United States alone for 2015.'

'There are no standard therapies for CLL...'

I agree, I would love for there to be a fasting or any other "easy" way to get treatment that would cost less. There are no dates on this article, so I suspect it has been around for some time and it doesn't feel too solid as far as having backing from reputable, known Drs.

[LeoPa]

Don't get discouraged from trying it. What do you have to lose? In case it does not help you, you can always go back to how you ate before, right? Only you can verify whether it will help you. The experience of others might not be relevant to you. Good luck.

[Splash24]

I feel it had a huge affect on MY CLL, for 7 straight years my WBC and Abs Lymp counts increased, after starting the FMD I got decreases, that I had not experienced before, my counts are now back to 2012 levels. If you wish, PM me and I will get into more detail. Good Luck!

[Pogee in reply to Splash24]

Please advise what the FMD is (fasting ??? diet?) is. Also, please be good enough to provide details of yourexperience with it. Thank you.

[Research123 in reply to Pogee]

If you Google The Longevity Diet you'll find all about it. Basically the theory is some malignant cells die off during fasting of a few days, but that is hard. Dr Lungo found you could get similar effects by eating certain low calorie things without it being so tough. FMD is fasting Mimicking Diet as it's not quite fasting

[Pogee in reply to Research123]

Thank you.

[Hidden]

Positive Modification of CLL, by any means...Epigenetic by supplements, fasting, behavioural changes, or whatever.. is a hobby of mine, to try and postpone myself from needing or having treatment as long as possible. I use myself and my wcc, rising or falling as parameters of success or failure... So I found your link interesting. I followed all the links out. ..Fascinating stuff... For me the AAAS articles were the most useful...And as a counterbalance they even include "The hidden costs of dietary restriction: Implications for its evolutionary and mechanistic origins" which rather positively begins; "Dietary restriction (DR) extends life span across taxa." ...

[UniversallyPersonal]

I think that they did extensive research on fasting against various illnesses in Russia and found fasting itself does not work against cancer. Cancer will change its source of energy to whatever is available, so the body would not outlive cancer cells.

Short term fasting could however have effect on how cancer cells respond to drugs. The research I found suggests that fasting for two days before chemo and one after totalling 72 hours can protect the body and increase the effect of courses of Chemo.

bmccancer.biomedcentral.com...

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

The result seem to be that the body signals all the cells to slow down metabolism, cancer cells do not read these signals and end up more vulnerable to chemo.

[Research123 in reply to UniversallyPersonal]

Yes what would be interesting to see would be how cll would respond to the new treatments like obinutuzimab infusions together with say a couple of days fasting beforehand

[UniversallyPersonal]

Yes would be interesting! My (wild) guess would be that fasting would have more effect with medicines that target the cancer cells metabolism or self preservation (Ibrutinib, Venetoclax etc.) or chemo that simply poison the cancer, than on antibody treatments (Rituximab, Obinutuzumab etc). But if fasting puts the body in a defence position it might make the T cells react more to the antibodies. However, I’m not convinced fasting would have great enough effect on T cells to make a difference.

I did try to find information previously for Ibrutinib, Idelalisib and Venetoclax, to see if it would be worth trying a on/off fasting regime with any of these.

I decided not to for these medicines that are taken daily.

The he issue I came across is that these medicines stay longer in circulation in the body when taken with foods, especially fatty foods. For example Venetoclax can stay in circulation several hours longer when taken with fatty foods.

The information I found also indicated that it takes about 48 hours of fasting before it would have effect on how cancer cells function. When the medicine is taken daily it would be tricky to make a fasting routine since you would limit the effect of the medicine for 48 hours before you potentially would have benefit from the fasting.

For chemo, when I had the transplant they gave me Rabbit ATG for two days before chemo, this made me throw up with fever and diarrhoea for two+ days before the conditioning Chemo, so in practicality 48h of fasting, and I seemed to tolerate the chemo well. Also during R-EPOCH I had mouth sores and other issues that made me limit food with two of the cycles, I also tolerated this very hard chemo cure well. But I can’t say that it for sure made a difference.

I would try to do fasting before chemo again.

It also make sense to me to limit sugars in general, but I’m not sure it actually will have any effect, cancer is so greedy it will eat anything to keep growing..

But watching our diet and eating healthy will for sure never hurt anyone! 👍

[Research123]

Thank you. That was quite insightful. For now I'm in w and w so just do occasional fasts. I was interested though particularly that fasting might make the drugs rush through your body faster which isn't so good. Hopefully at some point there'll be a trial that will tell us the best protocols.