Thanks and no offense to your oncologist but I am it sure that the oncologists are not totally in support of any therapy that they have not been taught in school.
My oncologist gave me no guidance with regard to diet or mental health - I mean bless him for getting me on a drug (IB) that has changed my life.
But i think you’ll agree that western medicines solely are not a complete answer.
I have been doing Wim Hof breathing techniques and Five Tibetan rites each morning and find that it gives me a sense of well being.
Only the evidence for both is hardly convincing, unless they include medication that is known to work for the former or in combination with something else that works for the latter, like a TENS unit.
There’s little evidence to support homeopathy as an effective treatment for any specific health condition: nccih.nih.gov/health/homeop...
"If you can't come to a clear decision after 3,000 trials then surely that tells you something. One thing is clear: there is little or no difference between sham and real acupuncture."
There is no dispute that the placebo effect is real, but in our community, when you need treatment for your CLL, you NEED treatment. That is why you don't see placebo arms in CLL clinical trials - it would be unethical to have them. That's also why this community's guidelines asks members not to promote alternative treatments. Relying on the placebo effect to cure what is considered an incurable cancer is also unethical, given that several large studies have shown dramatically reduced survival times for people who refused proven treatments and opted for alternative treatments.
See this 2017 study which showed that mortality was 2.5 times higher in those following alternative treatments: healthunlocked.com/cllsuppo...
I completely agree. Steve Jobs would be the most famous person to attest to it if he was still alive. Which he might be if he started treatment a year earlier instead of drinking carrot juice. But I thought this was mentioned as a supplemental therapy, to promote emotional wellbeing, not as a replacement for proper evidence based therapy by trained professionals. Sorry if that didn't come through from my previous.
I am certainly not relying on any placebo effect alone to cure my CLL .
That would be silly and dangerous - but doing holistic style adjunct stuff like yoga, fasting and MBC is fine.
BTW your quote was said:
“mortality was 2.5 times higher among patients with common cancers who chose only alternative medicine instead of standard cancer treatments such as surgery, radiation, chemotherapy, immunotherapy, and hormone-based therapies.”
BTW I finish all my workouts with the 5 tibetian rites😊. At least half of the weight you lost is water. It'll quickly come back. Don't know if you consider that good or bad 😉
“When you starve, the system tries to save energy, and one of the things it can do to save energy is to recycle a lot of the immune cells that are not needed, especially those that may be damaged”
Wow, congrats to climbing this mountain! ⛰️It's no easy feat and it's much easier to not do it because others said it won't help anyways. My hemonc said also that he doesn't believe fasting or dietary change would make a difference. But I still fast daily, do very low carb to keto and plan to do the 3 day fast before next bloods. I guess it makes me feel like I have a semblance of control over this and as long as I have it I can't fall into complete despair, can I? If its only my mental wellbeing it helps with, it is worth it already. Good luck and rooting for good results!
I went for my bloods yesterday and my oncologist calls me an hour later and says “Steve your WBC is down to 17,000 from 21,000 - I don’t know what your doing but keep on doing it”.
The WBC normal range is 4,000 to 11,000 so I’m really happy that my number is in the teens.
Ok so back to how this happened - I don’t know exactly as I’ve been on IB for 18 months and this is the lowest it’s ever been.
So I am not officially saying that this was the result of my fast - all I’m saying is I will continue doing what I’m doing.
I can't find where you say what impact it had on your blood counts. I fasted in my CLL regressed. Then I went back on eating more protein and more dates and figs plant sugars, and my numbers climbed.
Thanks for that. Was yours a water fast? I'm trying to understand really what a fasting mimicking diet is, and whether it might include squash for example. What did you use for guidelines? I'm also thinking that maybe simple intermittent fasting might be actually the lowest risk thing to try, but to continue it long term... I did fasting and but all my blood values to pretty much normal but then I slacked off over Thanksgiving and my leukocytes went up and my neutrophils went down
I think now I can see some risks of long-term fasting so I'm going to do a more gentle version I'm fasting from 6 PM at night until 11 AM in the morning but to eat Very healthy during my window. During Covid it's pretty risky to become fasting for a long-term. I get organic hemp seed and make a milk from that is such a great form of protein.
The JAMA Internal Medicine just published an article of research which shows that fasting can lead to loss of lean muscle mass, which is not considered helpful.
The article was on a study into purported benefits from fasting. It debunked claims of weight loss and longevity. It did not say anything about regaining lean muscle mass, just regaining weight.
They all push an agenda Big Dee. The question is always who funded the trial and what's his agenda. You see the problem with fasting is that there's no money in it for anyone. So nobody is interested in funding a trial to find out its health benefits. See the latest uodate from stevie about his cbc as of yesterday. Fasting is a great way to increase muscle mass. The trick is to strength train towards the end of your fasting window in case of daily intermittent fasting and then have a meal with some protein and carbs. The broken down muscle cells are promptly replaced by brand new cells. The ones you lost through autophagy were old and damaged ones due for replacement anyways. Fasting just speeds up the process.
I suspect most people who try fasting do not have CLL and also prescribe to vegan diets which are low on protein. With CLL my problem is making sure my bone marrow has enough protein to make required cells rather than rob my muscle mass of protein. If you feel it helps, go for it. I tried fasting and it did not benefit me as I was looking for a way to slow my CLL down.
I'd be the last one to promote a vegan diet. I'm a certified omnivore. I cut out the known offenders and eat everything else. I think you confuse fasting with starvation diets. Fasting is short and intense. Then you replenish the nutrients. Starvation diets undermine your health and are unsustainable anyways. So my guess is you did not do it the right way. Never mind, everyone can do as he pleases. That's the beauty of free will. We decide and then take responsibility for our decisions. Pay the price for the bad ones and reap the benefits of the good ones. All the best!
No I did not do starvation diet, but rather intermit fasting in attempt to slow down CLL, not for weight loss. I also eat red meat because it is the best source of iron and protein when you are low on red blood cells. I believe in balance healthy diet.
Hi Big Dee, agreed. A healthy balanced diet is very important. Organ meats are best for minerals and vitamins. Red muscle meat is also OK, except in large quantities not recommended due to high methionine content. What we want is more glycine 😊 Good for the joints and cartilage. So for me the fatter the meat the better. The more fat I eat the slimmer I am 😉 But that's just me. It's a pity that fasting did not work for you. Good luck and stay well.
That's amazing support. Mine got scared when I told her I'm going to do it 😊 She believes I will fade away in three days or what 😂😂. Nobody is a prophet in his own household 🤣
Haha my wife was happy to join when I told her we would probably lose about ten lbs each.......oops forgot to mention that those lbs would soon return after the fast .....😬
Steve, I forgot to ask whether you know how much of the decrease in the WBC count was on account of ALC reduction and how much the other white blood cell types. I've been thinking about B cell elimination by the hyper active T cells during the fast. If they manage to reduce the ALC count, do they kill off only the monoclonal cells or do they kill healthy ones too? That would be an interesting thing to know. Could it turn into the holy grail of treatment everybody is looking for? 😏 Only if it was that easy. Do a 3 day fast once a month and stop disease progression... Well, a man can dream. How often do you plan to fast in the future?
Hi Steve,I've been doing Keto strict diet(Under 50 carbs) for about 8 weeks now,I've lost 24lbs with walking around 5 miles a day thrown into the mix,in and out of ketosis having the odd day off and eating what I want.I've been on ibrutinib for about 18 months now,I'm definitely feeling better for the diet!
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Ibrutinib
Fasting
Ibrutinib
Interesting- Food increases the oral bioavailability of ibrutinib - Up to 2x compared to taking after overnight fasting. 
