Fasting and Ibrutinib

[steve_canada]

Well after reading an article by Valter Longo on fasting and the effects on the immune system - I did it this past w/e.

He talks about how the body goes into ketosis and effectively rids itself of bad or broken cells and then rebuilds itself .

nationalpost.com/health/fas...

Current Leukocyte count is 21,600

Started Friday morning drinking only water with lemon and the odd cup of black coffee.

Continued taking Ibrutinib each day .

Wasn’t too difficult but threw off my sleeping patterns a bit.

So fast forward to Monday morning - I lost a total of 8.6 lbs.

Will be going for a blood test on Friday

Wish me luck 🍀

[GMa27]

If it were only that easy. My oncologist told me to stay away from extreme changes in diet and fad ideas. Moderation.

Good luck 💕

[steve_canada in reply to GMa27]

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.

Here’s another link

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

[GMa27 in reply to steve_canada]

I love acupuncture and have taken homeopathic remedies for years.

It's all good. 💕

[AussieNeil Partner Administrator in reply to GMa27]

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."

theguardian.com/science/201...

Neil

[LeoPa in reply to AussieNeil]

The placebo effect is real though. If you believe it helps, sometimes it really does. And nobody knows why or how. There is still much we don't know 🤔

[steve_canada in reply to LeoPa]

Well how else can we stay positive unless we can trick our brains into feeling hope.

I also believe in MBC (Mind Body Connection) which until recently was not scientifically proven and therefore dismissed.

Wim Hof , under scientific observation has proven that the mind is capable of affecting the body - you can read about it online.

[LeoPa in reply to steve_canada]

Thanks I'll look it up!

[AussieNeil Partner Administrator in reply to LeoPa]

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...

Then this coverage of a 2018 study - with a similar 2x mortality rate: medium.com/@gidmk/complemen...

Neil

[LeoPa in reply to AussieNeil]

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.

[steve_canada in reply to AussieNeil]

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.”

[LeoPa in reply to steve_canada]

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 😉

[steve_canada in reply to LeoPa]

Yes I did gain back 7 of the 8.5 lbs I lost.

According to Dr Valter Longo

“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”

👍

[LeoPa]

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!

[steve_canada in reply to LeoPa]

Thanks Leo, you got it! It’s about mental well being and trying to feel like you are doing something other than popping three pills each day.

According to the research I’ve been reading, the fasting invoked the stem cells to recharge - who knows , let’s see what happens.

Good luck to you !

[LeoPa in reply to steve_canada]

Thank you, likewise! Pls don't forget to post an update once you have the results. I'm very curious 😊

[steve_canada in reply to LeoPa]

Yep will do

[steve_canada in reply to LeoPa]

Update**

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.

Good luck to y’all.

[LeoPa in reply to steve_canada]

Wohoo👍👍👍👌👌👌😁😁😁. Yippee, man I'm so glad for you! Very motivating!

[Hidden in reply to steve_canada]

Fascinating Stuff....I'll be following this trail out...

[Fairee2020 in reply to steve_canada]

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.

[steve_canada in reply to Fairee2020]

My LKC counts went from 22 to 17 after first fast and then down to 16 after 2nd fast

[Fairee2020 in reply to steve_canada]

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

[steve_canada in reply to Fairee2020]

Mine was pretty much just water with a little lemon and black coffee or tea .

The fasting mimicking diet is an eating plan that is based on eating specific foods that keep you in ketosis.

Sometimes I will also do the intermittent fasting which is no eating from 8:00pm to 12:00 noon . This one is a lot easier for most

[Fairee2020 in reply to steve_canada]

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.

[Fairee2020 in reply to Fairee2020]

Spellcheck failed me!

[Big_Dee]

Hello steve_Canada

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.

[LeoPa in reply to Big_Dee]

Did they also explain that you regain the muscle very fast when you eat again especially if you do strength training too? Good if they did!

[Big_Dee in reply to Big_Dee]

Hello LeoPa

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.

[LeoPa in reply to Big_Dee]

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.

[Big_Dee in reply to LeoPa]

Hello LeoPa

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.

[LeoPa in reply to Big_Dee]

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!

[Big_Dee in reply to LeoPa]

Hello LeoPa

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.

[LeoPa in reply to Big_Dee]

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.

[Hidden in reply to LeoPa]

Ambrose Bierce defined a "Cynic" as someone who sees things as they really are....Welcome to the club!

[Que-sera-sera]

I liked the whole concept that your body can do more to heal itself when it's not too busy trying to process all the food we eat.

However, the issue I had, was that it seemed like gastric acid was still being released and I was experiencing stomach distress

And then afterwards wanting to eat bigger meals to recoup the weight that I didn't need to lose, was another problem.

But if anybody can do it without these issues and see a real improvement, then I'm sure that would be encouraging.

[steve_canada in reply to Que-sera-sera]

The only issue I had was feeling a bit tired but generally was ok. My wife also did it with me for support .

[LeoPa in reply to steve_canada]

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 🤣

[steve_canada in reply to LeoPa]

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 .....😬

[LeoPa in reply to steve_canada]

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?

[steve_canada in reply to LeoPa]

Leo I wish and pray if it were that easy . My Hemoglobin did go down a bit from 158 to 150 but still within the normal range of 140-164.

I have my next oncology appt at the end of Nov , so I will fast once more before that .

And if it shows positive results - I will incorporate this into my lifestyle as a maintenance thing along with the other stuff I do.

Good luck Leo and let me know how things are going .

[LeoPa in reply to steve_canada]

Thank you, I will make a post with the results in 5 weeks once I have my CBC counts ready. Hoping for the best. Good luck to you as well.

[Fairee2020 in reply to Que-sera-sera]

It can help to add a little bit of baking soda to your drinking water.

[Que-sera-sera in reply to Fairee2020]

Yes ...and/or a sip of "mom" (milk of magnesia) which probably doesn't break the fast or too low calorie to count (?).....Thanks!

[Nickos66]

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!

[steve_canada in reply to Nickos66]

Awesome Nickos, great news that you’re taking control of the things we can control and reaping huge benefits!

[Canuck901 in reply to steve_canada]

So curiosity has got me what

Do you usual eat for breakfast , lunch and supper if you don’t mind me asking

Thx