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Could Fasting + TKI 'cure' CML?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4102383/?utm_content=buffer...

Prolonged Fasting reduces IGF-1/PKA to promote hematopoietic stem cell-based regeneration and reverse immunosuppression

A key reason why TKI's fail to cure CML is the fact that non-dividing leukemic stem cells avoid TKI induced cell death (via apoptosis). TKI's work by binding to the energy site of dividing cells (ATP socket). Only when a CML cell is dividing is energy demand high enough that without ATP fuel, the cell dies. That is how TKI's work (for the most part).

Leukemic stem cells, however, can remain dormant for years. In the absence of a TKI, when they start to divide under various signals, our CML disease relapses and we have to start taking TKI again. Some of us while PCRU are able to exhaust CML stem cells (LSC's) while taking a TKI and can move on to treatment free remission (~40% of PCRU patients). And that is great news, but for the rest of us, apparently, enough LSC's stay dormant long enough to always escape TKI assault. So when our TKI is stopped, CML soon thereafter relapses (often within six months).

This is where fasting comes in.

Apparently, fasting (3-5 days, water only), triggers blood system renewal. First, during the fast, older white blood cells are autophaged (i.e. destroyed and recycled). This process provides necessary proteins and building blocks to keep the body healthy during no food intake and also depletes the blood of white cells (mostly non-functioning anyway so you won't miss them). Various hormones and protein signals are changed which primes the bone marrow stem cells to divide rapidly in order to restore blood function. Essentially old blood cells are replaced with new ones directly derived from the stem cells (and this would be both LSC's and HSC's). The actual renewal occurs during re-feeding. When food is re-introduced (fast is ended), blood stem cells (leukemic as well as normal ones) are triggered to come out of quiescence and rapidly divide. This is key.

If we can cause (through fasting) a forcing of LSC's to divide on "cue", then in the presence of a TKI, they will be killed. LSC's are not immune to TKI's. They die when they are dividing and can't get ATP (TKI blocks it). There is evidence that depleting LSC's is key to treatment free remission. Getting at the LSC's cures CML.

My thinking is to put myself into a series of 3-5 day fasts over a year (maybe two or three times) as a way to force 'en masse' a coming out party for the LSC's - where my Sprycel drug is waiting for them to kill them. This way I can more quickly deplete this population of cells while my normal cells take their place. It's a theory that I am testing right now. (I have done one fast during Lent so far). I will do this two more times and then stop taking Sprycel to test if my CML doesn't return. I tried cessation once and it didn't work for me (I never lost MMR, but I did lose PCRU, so I went back on drug).

Interestingly - there is also evidence that fasting alone could weaken CML on its own. This is because T-cell population (killer cells) are modified and become more aggressive against cancer cells - especially on low carb, high fat diets. Key here is to keep the body in Ketosis which starves cancer cells (solid tumor as well as blood) of necessary sugar.

What I am describing above is no formal "cure" or even scientific (need clinical trial under strict mathematical control). But it's my body and any "idea" which doesn't cause undo harm that can be tested easily is worth it to me. And there is the side benefit of fasting - better metabolic health, less weight, lower blood glucose - all good to have anyway.

Not eating chocolate, however, will be tough.

 

Great experiment plan. Let us know what happens!!!!

I wonder if they ever look at dietary habits in the 40% of patients who can stop TKIs without recurrence? Maybe the weight or the Body Mass Index could be significant?

I think it is mostly avoiding sugar (simple carbs) and fasting periodically. Fasting was a way of life for our ancestors. Some because they had no choice (food especially carbs were scarce and mostly seasonal) and others as part of religion. Our modern society has gotten away from fasting as part of living.

Recent research articles are clearly showing the positive effect fasting has on the human blood system.

I'm curious about this and may give it a try.  If I understand correctly, a three day fast (approximately 84 hours) followed by normal diet with TKI will possibly reduce the LSC population and should be reflected by lower BCR/ABL numbers.

I'm currently taking 300 mg imatinib per day, but I have some leftover 100 mg dasatinib that I could take one dose of upon ending the fast.  I would then resume the imatinib therapy.  I tried dasatinib earlier this year but it caused a strange sensation in my chest and some mild arrhythmia that I really didn't like.  I'm currently waiting for my current PCR results.  Here's a link to my history: https://communityview.lls.org/users/kirk

I'm wondering what would be the best timing of the fast in relation to my next PCR test?  I suppose it might be instructive to do the fast now and then there would be a couple of months until my next PCR.  What do you all think?

Do you continue to take your TKI during the fast period?

Absolutely. That is the key part.

During the fast CML stem cells (as well as normal stem cells) will start to rev up and begin self renewal by dividing in preparation for blood cell expansion (progenitor cells) and differentiation. You want your TKI hanging out and available so that when CML stem cell division occurs, the TKI is there to enter the cell and binds to the ATP (Adenosine Tri-phosphate) socket leading to cell death. It's like the last scene in Butch Cassidy and the Sundance Kid where Paul Newman and Robert Redford are safe and sound as long as they stayed in the building (Leukemic stem cell not dividing) - but as soon as they make a run for it outside - the posse is waiting and not just one guy - but the whole army (i.e. Tyrosine kinase inhibitors)...fade to black. Dividing CML stem cells don't stand a chance in the presence of a TKI. The key is to get them to divide (i.e. ... come out of hiding).

My theory is that fasting (which we now know) forces blood stem cells to divide at a time known to you so that they take a big hit - maybe sufficient hit that their population is so reduced they are no longer able to initiate CML disease (T-cells become effective again and mop up residual). It may take several rounds of fasting over a year to "pulse" the CML stem cell level down enough to be effective.

By the way - blood letting (as in donating a pint of blood if we were allowed) should cause the same thing. A sudden loss of blood also triggers the same biological response and forces blood stem cells to divide (to help quickly replace lost blood). Of course fasting is with its side benefits of weight loss and metabolic improvement is probably better for you than losing blood deliberately.

Just curious, when you stopped Sprycel, how long before your pcr went up?

Hi Karinne,

It took nine months and it never broke above MMR (i.e. 0.1% PCR). For the first three months off Sprycel, there was no change. Then in month four, I had a slight increase (i.e. 0.01%). In month five, it went up to 0.04%, then in month six it fell back to 0.02%. In month seven, PCR rose to 0.08% and in month 8 it fell back to 0.06%. My doctor suggested I continue my personal trial as long as I was below 0.1%, but I was tired of getting tested every month. Driving and PARKING at M.D. Anderson cancer center is not fun. So in month nine, I decided to resume my 20 mg Sprycel and see if I fall back right away. I did - within two months I was back below 0.01% and now PCRU.  It was a good test and I will try again except I won't test every month since I am confident that my CML will not "erupt" suddently - but only slowly if at all next time.

I came to my own personal conclusion that taking Curcumin plus maintaining high normal vitamin D blood level was (and probably still is) keeping CML suppressed (very slow growth). I felt that my own immune system is still overwhelmed by the high leukemic stem cells I no doubt still have. I believe if I can get my leukemic stem cell population reduced below some threshold level, then I feel can be functionally cured (immune system takes over - don't need Sprycel anymore).

That's my hypothesis in any event. I am on day two of my 3 day fast to coax LSC's out of hiding and into division so Sprycel can kill them.

P.S. - I told this story to a friend of mine who has CML and wanted to get pregnant. She used my story and shared with her doctor so she could stop taking her TKI (Sprycel). She became pregnant and her PCR slowly rose during the nine months (she also took Curcumin and kept her vitamin D level elevated). She delivered twins and is now back taking Sprycel and her PCR is falling back down.

 

Hi Michael,

I was just wondering if you're taking any supplements during your fast, or just TKI and water?

Thanks, Kirk

Hi Kirk,

I do take a few supplements during a fast - mostly Magneisum, Himalayan salt water (1/4 teaspoon per glass per day), Curcumin and vitamin C.

Fat soluble vitamins which require food (K2 and D3), I don't take until after the fast ends.

Although my main driver for fasting and Ketosis is to drive CML stem cells out of hiding, I have to admit, losing weight has put me in range of my grad school days. I now have a 32 inch waist. Imagine that. I am much lighter on my feet and feel a heck of a lot better (in terms of energy and mind clarity).

And to think it doesn't cost anything to not eat.

Fasting is not for everybody and I would not recommend it for people who take prescription drugs for their heart, blood pressure, etc. (TKI's are fine - except perhaps Gleevec.) without a knowledgeable doctor's oversight. Once fasting is complete and weight loss is achieved, most people no longer need blood pressure medication or diabetes drugs. Sad that the medical establishment does not embrace this.

My fasting glucose dropped 20 points from 110 to 90 - and it's still going down hopefully to the mid-70's, my A1c is solid normal, my other metabolic numbers are all like a 20 year old. Key to this is not the fast itself. The fast just jump starts the process. What causes metabolism to reset is the elimination of sugar and refined carbs. Carbs are important to health, but not every day - and you can easily go without carbs for months at a time.

Humans were not designed to eat sugar/carbs every single day. But humans were designed to go without food from time to time - only because they had to ... no choice.

By the way - I very much look forward to that bowl of ice cream. It's just that it will be a one time treat when I hit my weight target.

This is awesome. I ve just started fast since 30 hours and felling great. I am curious regarding the outcome. I am also on Dasatinib 100 for almost 2 years now, since diagnosed. I am trying 3 days first and after this maybe move to 5 days after couple of weeks. What do you think about having tea and coffee near water? How do you feel and what are your test results lately?

Ciprians...

I do drink coffee in the morning and tea during the day during my fasts. I fast one day a week now.

Twice a year I will do a 3 day fast. My last PCR test was "undetected" and my next one is in September. I'll probably fast my next 3 days at the end of August.

I would avoid back to back long term fasts. You want your body to recover - especially recovering blood counts. It takes about two months for blood to regenerate - so after your current fast, when you start to eat again, your body will start rebuilding your immune system. You would want that to complete before hitting a long term fast again. One day fast doesn't matter.

I am eager to try stopping Sprycel again and test for durability. I''m hopeful my fasting program is helping.

Scuba - Is there any evidence that a one-day a week fast disrupts the blood-making apparatus as intended for our purposes?

there is some evidence that even a one day fast starts to stimulate stem cells (in the intestines):

https://www.sciencealert.com/fasting-for-just-24-hours-boosts-the-regene...

Dr. Longo's work, however, shows that it takes 3 days during which time the body starts to consume many of the excess blood cells (many of the old tired ones). How long it takes for this process to get ramped up is probably more than a day. It's takes a day just to get the sugar out of our system before Ketones get started.

I suspect one day fasts do not have much impact ... it's day 2 and 3 that the gene changes kick in (according to Dr. Longo). And then once re-feeding starts, blood stem cells are triggered to re-generate the depleted blood/immune system.

 

Such an interesting line of possibility.  It would be hard to construct a good study for our purposes, but I hope somebody is doing it!

I follow with great interest the scuba issue. It is a fact that the immune system wants three months to come back. I'm a month in keto. I'm preparing for 3 days fasting. The problem in this case is that TKIs because of their toxicity keep the immune system to very low levels. Perhaps he can not help the body and all the work will be done by TKIs. I am of the opinion that you may have to initially stop a drug and after three months when the immune system will recover from this 3-5-day fasting . I believe that after the regeneration of the immune system will attack the problem stem cells. Fasting must be harsh, that is, without food, water, tea, coffee ... nothing from the mouth ... some therapists do not allow a bath to do the healer.

Tom,

You absolutely should be drinking water during a fast! Water is vital for life every day. In fact, during a fast you should be drinking more water - a glass an hour if one remembers, but certainly you need to stay well hydrated. Coffee, tea are fine to drink, just without any cream or sugar added.  The goal in a fast is to remove calories.

During a 3 day fast, the body will begin (after the first day) to scavenge blood cells for their "parts". Most of these cells are older non-functioning anyway. But they do take up space sort-of-speak. As the fast proceeds these cells are recycled. When re-feeding occurs signals are sent throughout the body for stem cells to divide such as hematopoietic stem cells (HSC) so scavenged cells can be replaced. HSC's will re-generate the entire immune system with fresh new cells. This happens quickly - days - not months.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4102383/

You should keep taking your TKI during this time. In addition to their being HSC's (normal blood stem cells)l, a CML patient also has LSC's (Leukemic stem cells). LSC's were formed when an HSC mutated into the famous Philadelphia chromosome (9;22 translocation). LSC's, no doubt, receive the same signal to divide when re-feeding begins after a long fast as HSC's do. Any time an LSC divides we want it to die (apoptosis).

That's when we want to kill 'em (LSC). As they divide, we want our TKI lurking to interfere with their cell division and cause apoptosis. So take your TKI throughout.

There  is evidence that as our immune system re-generates from a fast that it alone can also attack cancer stem cells, but the data is spotty and I am not convinced yet.

The only way we can become functionally cured is when the LSC population is reduced to a low enough level to be rendered useless in re-starting CML. Research is underway with other molecules to cause this to occur. I feel fasting might get us there sooner. And if doesn't work - losing a few pounds is o.k.

I hope this is clear.

*note: non-dividing quiescent LSC's are unaffected by TKI's. Only when they divide are they susceptible.

Very interesting article you gave. What I did not understand is if with fasting only the HSCs are renewed; With LSC what's going on? Can the number of LSCs be reduced only with fasting? Without the help of TKIS. Thanks in advance scuba.

During fasting very little if anything is renewed - stem cells are quiescent. The body is conserving, recycling and clearing.

Upon re-feeding, the presence of food in the system triggers hormones with trigger genes which generate protein signals that travel to the bone marrow and cause HSC's and LSC's to divide and differentiate to re-populate the scavenged immune system. HSC's and LSC's are essentially the same except one leads to cancer if nothing checks it (LSC's).

Also - even without TKI surveillance, cancer killing cells are enhanced (NK - killer cells) so that HSC's are dividing and LSC's are attacked.

https://www.healthline.com/health/fasting-and-cancer

My hypothesis is that during fasting and re-feeding, LSC's are 'triggered' to divide just like HSC's are triggered to divide - and our TKI is present to kill the dividing LSC further decreasing the LSC population. I further surmise that once LSC's are reduced in number sufficiently for our normal immune system to take over, our TKI may no longer be necessary. That's my thinking. It's why I am doing a series of 3 day fasts - so I can try stopping Sprycel and see if I can hold PCRU.

It's just my personal theory with a bit of science behind it.

 

 

Very informative dear scuba. I accidentally found a study about Feverfew. It contains a substance called parthenolide . parthenolide may kill leukemic stem cells according to the following study: https: //www.ncbi.nlm.nih.gov/pmc/articles/PMC1988840/ What a nice thing would be if a flower cared for us! I hope this happens quickly! I hope that science will also help spread its research to other substances in addition to the beloved - necessary TKIs.

do you know where and in what form we could purchase feverfew?

I’m a chef and this will be hard to do, but doable. The bigger concern is can you take Sprycel with no food and just ton of water or coffee? i really have to try everything, starting with removing any form of sugar, carbs and dairy, but three day fasting i never done, hell i never done one day fasting!

please advice on TKI taken with no food and any possible withdrawal from sugars.

 Thank you guys, you all make this journey easier.

I continued to take my sprycel during a fast. Sprycel does not cause nausea the way gleevec does when stomach is empty. I take sprycel at night before retiring so it works while sleeping. By morning, it's gone from the system (5 hour half-life). I drink coffee, tea, water during a fast. Coffee helped with the first time headache.

Hi,

Really found your post interesting! What happened when you fasted and took your TKI? How long did you keep up the fasting and how often would you fast? My wife and I are trying to get pregnant, and I would like to try without TKI in my system - at least for sometime. It is really stressful because of our ages. Really appreciate your response to this!

Thanks!

Satish

Taking sprycel during a fast is easy. I tend to take it on an empty stomach near bed time anyway.

I fast now once per week for one day. Two or three times a year I fast for 3 days at a time. Because I am ketone adjusted, fasting is now easy.... as long as I stay out of the kitchen. It's become a way of life. I don't look at eating as something I have to do every day. I feel better, I'm thinner (a lot thinner) and I am still undetected even though I dose every other day at 20 mg.

Fasting is good for your immune system.

https://www.forbes.com/sites/stevensalzberg/2020/01/06/can-intermittent-...

I tried to fast two times but I fill sick... Headache ,dizines and very very tired...

I would recommend to try it lightly at the beginning. Maybe one day at first and next time prolong it to get your body use to fasting. It really works that way. I used to do pure water fasting even before cml diagnosis and it took some time to adjust to uplesant part of it. I believe it´s only temporary and after few repeating you won´t feel this side effects anymore or just in very mild form.

I used to fast 7-10 days just with water and it was very refreshing. However after CML diagnosis I tried it just once and during fifth day I experienced very unpleasant tachycardia, so next time I am going just for three days and I believe it would be ok. Three days now is for me almost nothing in compare what I experienced when I started to experiment with fasting several years ago. So, have a faith. :) 

Ah yes ... know it well. There are tricks to minimize and even eliminate the headaches, dizziness and some of the fatigue.

What is happening is you are carb addicted and going through withdrawal. Your body probably has never had a day without carbs or food. So your non-sugar system has never had to "fill the gap" for energy by using ketone bodies. Ketones are fat sourced fuel. Your body needs enzymes to process body fat into ketones in sufficient amount to make up the energy lost by no sugar being around. When you fast for the very first time - your body is shocked into having to make these enzymes which in turn cause fat to be released and turned into ketones by the liver. This is a 24-48 hour process. No getting around it.

However, once you muscle through this - like getting in shape, you then have the increased ketone enzymes available for next time. So going into and out of ketosis is easy and painless ... i.e. no hunger, no headache and absolutely no fatigue. In fact - once in ketosis there are no cravings or energy drop during the work day, because fat burning is constant where as carb burning is not. there is no such thing as a sugar low when in ketosis.

Keys to avoiding the issues above:

1. Stay hydrated - drink plenty of water along with a couple of glasses of water with himalayan salt added (1/4 teaspoon). The headache you feel is an electrolyte imbalance - lack of sodium, potassium, and magnesium in particular. Add these to water and the headache will minimize.

2. The dizziness is low sugar - and will fade once your body starts making ketones. In fact - once ketones kick in, you become very alert and sharp. I wish I had known this when studying for exams.

3. Fatigue will exist until day two and then disappear.

Buy ketone strips to test for ketones present. Once you see the strip color change to light purple, you have completed the transition.

I routinely go into and out of ketosis easily now. I can choose to eat or not eat without any of the above issues you cited. None. But I had to go through it the first time.

(note: this is only possible if you have no underlying diabetes issues. Ketosis/fasting should not be attempted by those who are type 1 diabetic. Type 2 diabetes, however, may actually reverse their diabetes as my brother-in-law successfully achieved)

 

No Scuba I do not have any type of diabetes... And yes I am addicted to carbs!My work demands a lot of energy and I am working out a lot so I am hungry all the time... I will give it a try doing all the things you described! I am sure it worth it!! Thank you very much!

Scuba, Any concern of keto doing any damage to the liver?

None. If anything Keto will help your liver enormously (which I have since tested*).

During a fast, the first thing your body does is burn through its glycogen stores (sugar) which are in the liver and muscles. This takes about a day or two - faster if you are exercising. In fact, running a 3 mile fast run with sprints will burn through your sugar in 20 minutes.

After that, the liver produces enzymes which signal the fat cells, give up the fat. Fat cells then release fatty acids into the blood which are conveyed to the liver. At that point, your liver begins generating ketone bodies for fuel. If you are fat adapted, this is near instant - but if you are not fat adapted (first time no carbs), this will take 24-48 hours to transition (source of the fatigue and headaches).

When the liver goes into ketosis mode, the first fat to get gobbled up is the liver's fat - so-called visceral fat. This visceral fat is what harms the liver (fatty liver disease). During ketosis, fatty liver is reduced or eliminated (https://scholars.duke.edu/display/pub697808).

https://www.dietdoctor.com/groundbreaking-study-low-carb-effective-treat...

Just one to three weeks is all that is needed to restore liver health during ketosis.

(*When I first started focusing on my metabolic health post CML diagnosis, I had a liver ultrasound taken - just part of the routine exam. They found my liver to be borderline grade 1/2 fatty liver. It was bigger than normal and explained a bit of my larger than normal waste size at the time - (I was still a good looking guy, however). After I started fasting and began a much lower carb diet - my liver restored completely in just a few weeks - no fatty liver at all and size was normal. My waste also dropped a bunch of inches (now 32 inch from 36) where it remains some 7 years later. I look svelte).

 

 

 

Hi,

i am currently treating for CML and was diagnosed july last year. Im taking dasatinib. I was actually thinking of trying a ketogenic diet with intermittent fasting and came across your post. Can you please share with me if what you have done so far helped you with treating CML or any advise please? Thanks in advance...

Scuba,

i am interested on an update of this theory, what your numbers have been, how TFR has gone for you. I am about 2 years into treatment (50mg Sprycel) and am at MMR 4.  I am starting to experience significant side effects and want to fast.  Any information of your journey would provide some insight.  Thank you 

same situation like firefighter, interested too...

I fast regularly now (1 day per week) and longer fasts (3 days) a few times during the year. Apart from my initial protocol for CML, I find fasting clears my mind, always lose 'liver' fat and resets my blood sugars. It's great. As animals, we were never designed to eat every day, so from a health perspective, unless you have an underlying metabolic issue (diabetes), fasting is normal.

I am "undetected" for almost two years. I stopped taking 20 mg dasatinib (sprycel) back then and haven't had any detection whatsoever. I have no idea if fasting triggered my success, but the science seems compelling. In my view, it's all of what I have done to beat CML. I think CML simply gave up.

  • Selenium (attacks CML stem cells)
  • Curcumin (down regulates CML genetic pathways)
  • vitamin D (activates T-cells which attack cancer (including CML)
  • Vitamin K2 (same as above, but via calcium control)
  • Magnesium (helps D do its job & great for the heart)
  • (I avoid sugar - most of the time)

and fasting which "consumes" old blood cells including CML cells and upon re-feeding, regenerates the immune system (3 day fast required) vi stem cell activation. My theory is that when stem cells are activated (including residual CML stem cells) via fasting end, having a TKI around kills them. After repeated steps, this helps reduce or eliminate the CML stem cell pool. There is a coincidence with me fasting, taking sprycel and then when I stopped, CML has not (yet) returned. It is my expectation that even though I no longer take sprycel, my immune system is healthy enough to do its job keeping any restart of CML below detection.

I no longer fast to "treat" CML. I fast because I believe it is good for my body's health.

I have been following your fasting posts for years! I follow your advice! Your offer is valuable. Fasting is salvation for many diseases. Cleanses body and spirit. At one point I got to six days on just water... felt more spirit than body. I confirm your truth! I'm off meds and tests....feeling good! Thank you!

I have been following your fasting posts for years! I follow your advice! Your offer is valuable. Fasting is salvation for many diseases. Cleanses body and spirit. At one point I got to six days on just water... felt more spirit than body. I confirm your truth! I'm off meds and tests....feeling good! Thank you!

Hi, I've just found this thread and am so glad to see there's a recent update and you're still keeping CML at bay!

I was always into fasting and keto prior to CML and then all the anxiety and stress around diagnoses last Christmas has meant I actually stopped doing the normal things I was doing for my health and just relied on the medication to treat CML. Reading your post makes so much sense to me and knowing that I have taken those steps in the past makes me confident I can follow them again. I was worried that taking TKIs while fasting was dangerous and I didn't want to jump down the rabbit hole of internet research so I just did daily IF (about 8pm to 12noon fasts most days) but stopped any 72 hour fasts.

I've recently started having issues with digestion and possibly pancreas and looking into fasting to help regulate things again. How long were you in in MMR before you came off sprycel? I've been on Niltonib (Tasigna) for 8 months and last BCR-abl was 0.04% next result expected next week and hoping it will be below 0.01%. I've been told that once I'm in MMR (or DMR - deep molecular response some call it, but same thing I think?) I have to continue Tasigna for a minimum of 2 years before they'll consider taking me off it. I really want to try ending it sooner and do fasting /TKI protocols and come off after another year and see if I can maintain treatment free remission, or is that crazy? What I didnt understand before is why once I reached MMR/DMR why I needed to take the drugs for another 2 years, but I'm guessing that's because like you said, the dormant stem cells might not have been activated so far and in that 2 years there's a better chance of enough being 'caught' by the TKIs. If I did once a month fasts which activated them however whilst taking Tasigna, theoretically could that speed the 2 years up to a year and at least give it a go?

Really interested to hear your thoughts on treatment length with different fasting protocols because my consultant won't even entertain the slightest discussion on diet, nutrition, any alternative studies whatsoever.

Thanks scuba so much for all the research and time you've put into your posts! Really great to hear you're doing so well.

See linked article:

only the duration of MR4 or MR4.5 ≥5 years before stopping treatment was associated with a lower risk of loss of MMR. In summary, TFR is safe and feasible in patients with Ph-positive CML on TKI therapy. Achieving MR4 or MR4.5 for at least 5 years is correlated with a better outcome.

One of the authors, Jorge Cortes, I know personally and inquired further on the data. Five years is indeed ideal, however, 90% of that result was achieved after 3-4 years, meaning that only a marginal improvement at 5 years was obtained. The difference between two and three years was striking - so going a full 3 years is a good option.

I ended my treatment after 3 years "undetected". I felt if CML came back (I'm close to two years now off drug or TFR), I would go back on drug and probably stay on it indefinitely at very low dose (10 mg every other day dasatnib). However, most people who try going off drug after successful non-detection are not following my nutrition protocol which is strongly anti-cancer.

This is the best thread I've come across on the subject and much gratitude to Scuba for sharing.

I'm across the pond and joined this forum as there are so many folks who are motivated to find an edge in their treatment.

I was diagnosed in March 2022 but most likely had it since spring of 2021 or earlier. In April 2022 I was prescribed bosulif which worked very well...until it didn't. Now I've been put on sprycel and should start in about a week when insurance is approved.

The thing to know about bosulif is that it is strongly recommended to be taken with food. If one takes it on an empty stomach, the efficacy is reduced (as explained to me by a pharmacist). Furthermore, the side effects are increased.

So, in a way, I'm almost grateful to be switched to a TKI that I can take on an empty stomach as Scuba has done. This will allow me to do a 3-day fast or even a fasting-mimicking diet.

I'll be happy to share my experience in the coming weeks/months and sincerely hope others do the same.

By all means share your experiences!

Scuba - Still the nagging question of the original genesis of the mutation bothers me.  I remember asking a nurse practitioner in the oncology practice this a decade ago, and she answered, "good question!"  Simply put, even if you successfully wipe out all the LSC's and your immune system is supposedly catching any rogue cells, how can you change whatever condition gave rise to the Philadelphia Chromosome in the first place?  Why wouldn't the whole show begin anew?

how can you change whatever condition gave rise to the Philadelphia Chromosome in the first place?  Why wouldn't the whole show begin anew?

Exactly!

The number 9 and the number 22 chromosome are amazingly packed inside the nucleus and wrapped tight right at the breakpoint spot where 9 and 22 touch (bcr and abl). When the chromosomes unravel in order to transcribe proteins or replicate, a piece of one chromosome breaks off and gets attached to the other and vice versa.... sort of like it was stuck together when division set in (bcr breaks off of 9 and goes onto 22 and a piece of 22 goes onto 9. This forms the bcr-abl oncogene on chromosome 22 we all know about).

Once I understood the wrapping location of these two chromosomes it became obvious to me why bcr-abl forms in the first place. I suspect that this type of translocation happens ALL OF THE TIME in non CML people and it is happening right  now in me (even though I am in TFR). How can it not happen?

My theory, and it is only a theory, is that as these translocations happen naturally, only a few cells are affected and the body is quite able to detect them and cause apoptosis (cell death) so they can be destroyed. In addition, other genetic pathways are activated in order to keep bcr-abl below detection in the normal population. The cells are too few and unable to do much harm.

A key question is not that bcr-abl forms (it forms all of the time), bat what enables bcr-abl to expand and escape "detection" and natural control and become disease.

I suspect CMl gets started when an environmental event (such as radiation exposure (i.e. CT-scan, etc.) or dramatic immune weakening (even temporary) facilitates a tremendous number of CML stem cells getting pooled together. We know radiation can muck up chromosomes and facilitate bcr-abl forming dramatically in large pools rather than sparse and random. Couple this with a weak immune system and a perfect storm for disease formation occurs.

Sparse and random our immune  system can handle, but a sudden creation of a pool of leukemic stem cells create their own micro-environment and shut down immune attack - the horse is out of the gate sort of speak.

Our TKI's are a like a flea bomb in a house which wipes out a large pool of CML cells. Once this number is reduced back to "sparse and random", it's reasonable the body can take over immune surveillance assuming the immune system is back to strength again. I don't believe that all leukemic stem cells are ever eradicated and even if they were - it is as you say above - new ones can get spontaneously created.

In my case, I do know my vitamin D level was near rickets at diagnosis AND I had a series of CT-scans. Not surprisingly, CML developed a few years later.

We may still have a genetic pre-disposition to CML vs other people - because after all, many people get CT-scans and don't develop CML or have low vitamin D or both.

As mentioned, what I describe above is a hypothesis. A more rigorous scientific study with control groups would be needed in order to learn if this is how it truly works. But I suspect that good nutrition focused on the critical few vitamins and minerals we need for immune health is what I am doing differently to minimize CML ever coming back even if spontaneous bcr-abl stem cells for again. That - and I will NEVER have a CT-scan again.

 

Reasonable reasoning!

Hey Scuba,

 

Newly diagnosed this April, im a 35 year old male. 

Abr bcl baseline 57%

          3 months 1.3%

          6 month 1.7%

My next check in Jan. 2023.

 

I started to fast this week and wanted to add the vitamins to my diet as well. Just wonder appox how many mg of each pill did you take per day?

 

Thanks so much! 

-Alex

What TKI are you taking and dose?

Have your vitamin D level measured by a reputable Lab. Below is what I have done and continue to follow:

  • vitamin D3 - If your level is below 50 ng/ml - consider supplementing with 10,000 IU's per day for three weeks, then alternate 5,000/10,000 every other day through winter and test again in March. Raise or lower dose (never exceed 10,000 IU's per day) to keep your levels around 70 ng/ml (> 60 ng/ml < 100 ng/ml) on average. Summer sun exposure can be as good as a supplement.
  • Vitamin K2 (as MK-7) - 200 mcg (minimum), ideally 400 mcg first year per day. (works with vitamin D)
  • Curcumin (C3 complex) - newly diagnosed first year - 4-8 grams per day (more is better up to 8 grams) after MMR 2 grams per day is good
  • zinc - 15-30 mg per day
  • Vitamin C - 500 mg twice a day
  • Selenium (very important) - 200 mcg per day OR two or three brazil nuts (I alternate)
  • Magnesium - 400 mg per day split morning and night. (great for muscle cramps and sleep - helps vitamin D do its job)

The above list is my protocol to keep CML (and likely other cancers) from coming back.

 

 

Thanks for the info and quick response! I am on 100mg of sprycel. I plan to start your regimen once I am tested for vitamin D. Any other info or tips are greatly appreciated! 

 

-Alex

Scuba,

I had to stop sprycel after less than two weeks due to abnormal heart beat.

My doc and I agreed to give good ol' Imatinib a try. I know you have to take this with food so it appears I am likely limited to IF.

Do you think decreasing my feeding window as small as possible, say 20/4 or even OMAD will help my cause? Any thoughts are much appreciated!

When I took imatinib, I had to eat something with it - oatmeal being the best at preventing any nausea. Fasting would not be an option.

However, you can try "mimic" fasting to some degree by taking your imatinib with food that has no carbs and only fat such as avocado and see if you avoid nausea. If you do - then having only one avocado is low enough in calories to help you get into ketosis. It will just take longer.

One meal a day is an option as well in terms of concentrating calories to a small time window.

Thanks for the response.

I'm going to dial in Fasting Mimicking Diet once per month and do a omad or IF with a tight feeding window on the other days.

Hi Scuba,
Fasting (3-5 days) triggers blood system renewal and LSC's are 'triggered' to divide just like HSC's are triggered to divide, additionally a sudden loss of blood also triggers the same biological response.
What about an infection? Alpha interferon is a naturally occurring cytokine which is produced by cells of the innate immune system in reaction to viral infection or other environmental stresses. There are studies suggesting that IFNa may be able to activate dormant human leukemic stem cells just like HSC's are triggered to divide.
Of course, I am not suggesting to get an infection which can kill you just to make your dormant LSC’s to divide. I had high Basophils for the last two years, but it was after a COVID infection that my WBC count was out of control including the presence of Myelocytes and Metamyelocytes in my blood.   

It would be ironic that infection by virus, which triggers interferon-alpha release would help reduce leukemic stem cell population. Indeed, early work in CML treatment was done using a form of interferon-alpha - called pegylated interferon. And when coupled with imatinib, led to dramatic remission rates in CML. In fact, patients who were first treated with interferon-alpha (as pegylated inteferon) and then treated with imatinib in early trials, had far higher success at treatment free remission when therapy was stopped (statistically signficant).

In correspondence with researchers in CML, I asked why is this not done routinely (interferon-alpha + TKI) and the answer was that the adverse events of providing interferon-alpha outweighed the benefits. I did not understand this reasoning since the impact of reducing LSC's could be significant. But apparently there were very significant downsides of using the enhanced version of interferon.

Unfortunately - naturally occurring interferon is targeted for specific diseases and having an infection which increases interferon release, by itself would not necessarily impact Leukemic Stem Cells (LSC's) in vivo. There needs to be T-cells targeting the LSC's as well. No doubt infections induce bone marrow to make more white cells (LSC's divide) - but if eradicating LSC's by infection had promise, all of us catching a cold while taking TKi's should have had our LSC's wiped out. Who knows, maybe some have !! After all, 50% of patients with undetected remission remain undetected even after stopping treatment. Maybe they had a cold before stopping? There is evidence that virus' such as Covid can enhance anti-cancer in some conditions:

However, fasting for more than 3 days, however, is definitely a way based on published research to induce stem cell replication once re-feeding occurs. And during this rapid rejuvenation of the immune system - the presence of a TKI (or a functioning T-cell surveillance) should devastate the LSC pool.

I subscribe to the idea that CML - the disease is caused by a dramatic enlargement of the LSC pool from which immunity is not possible and LSC's initiate disease. Reducing the LSC compartment(s) by whatever means (fasting + TKI?), may very well enable the immune system to resume normal surveillance and keep LSC's either isolated or eliminated.

My own approach has been to increase all known anti-cancer lifestyle changes (including fasting) and to cut down all pro-cancer lifestyle activities (eating sugar). Would I get sick deliberately to try and get rid of LSC's? No - not when there are other ways to accomplish the same goal.

 

Hi Scuba, All,

I was diagnosed with CML in June 2021. At that time I was already familiar with the work of prof. Valter Longo and prof. Thomas Seyfried on fasting. Three months before  the diagnosis I did a 3-day fast trying to optimize my health not knowing that probably I was already sick (or maybe it triggered the illness by stimulating dormant ill stem cells, who knows).

I started doing cycles of 3-day fasts and 5-day fasting mimicking diet. I bought keto mojo  and made sure my GKI (glucose/ketone index) was around and below 1. I got relatively quickly in MMR3, but after 1,5 years it seems that the process is blocked and I can't get into MMR4. I even did a 7-day water fast a couple of months ago, but my PCR got even higher, eventhough it remained in MMR3. Recently I've read that  it takes longer period of time to reach MMR4 for patients with the transcript b2a2 compared to b3a2. Mine is b2a2 and I was wondering what your transcript was?

The truth is that between the fasting cycles I was not very strict with the carbs so your post gives me hope that if I try harder it may work. I read an article that fasting helped fighting ALL but not AML in mice. So on the one hand I am confused if fasting makes any difference in CML but on the other hand I think that low glucose and low igf1 should be beneficial. 

Thank you for sharing your experience, it encourages me to continue trying to reach at least MMR4. I want to do more than just taking my pills (dasatinib, 100mg daily).

cheers and good luck, 

Mira

Hi Mira,

My approach was not that fasting alone attacks CML (as you pointed out, it works more for ALL than CML base on the data). My approach was to use fasting to trigger blood stem cell division and then in combination with dasatinib (low dose: 20 mg), I used Curcumin, selenium, and low carb to attack CML stem cells.

I believe selenium is key at the stem cell level and Curcumin makes CML cells susceptible to TKI's (down regulates nfKB pathway). Low sugar (keto) is also antagonistic to cancer cell division.

No guarantees of course - just an approach favoring what little we know of the biochemistry.

Scuba and all,

I just found your post and am hopeful!

Diagnosed  in Jan 2020 and have never been in MMR (0.3%) only ever been on 100mg Sprycel.

Now my last 3 tests have wavered between 0.3% and 0.4%.  They want to switch my meds or put me on a trial, but I don’t like either choice.

I’ve been carnivore for 3 weeks.  Almost always in ketosis. My background is health science and MS in dietetics, nutrition and food science, plus decades in food, nutrition and supplement industry…so when I tell you I’m on an all meat and fat diet, it seems counter to all my education and experience!
 

Within the first 2 days I had such profound effects on my health!  Inflammation (bottom of my foot injury) was 99% better.  All inflammation was 99% better!. Life changing in being able to be active again and not icing my foot if I over did it on any particular day.  Better sleep.  Better mood. Less diarrhea (side effect of Sprycel and I’ve tried it all to mitigate) (for those who cringe at the thought of all meat and fat and the arguments against it, I’ve heard it all 😂 - fiber, poops, cholesterol, heart disease, potential health side effects….and all.)

I’ve done vegetarian, I’ve done keto, intermittent fasting, fasting, I’ve done it all. This has given me the most profound results with some of my goals…. Let’s see what it does for CML!

So I have a blood test coming up next week.  I’m hopeful the carnivore diet has helped in some ways, maybe. 🙏🏻 
 

Depending on the results of my blood test next week, I’m going to remain on this diet and add fasting for a few days a month until my next blood test. I won’t be changing my meds yet nor will I go into a trial with an experimental drug (😳)

 

Thanks for this info.  It may be  antidotal, but most nutrition research in people is exactly that!

I’ll be sure to check in.

 

This post gives me hope! 😊

 

Thank you Scuba, I will give a try with 3-day fasts. I've been doing fasts (3-5-7 days) and in the past I took some curcumin but now I will introduce low carb after the fasts and selenium.
 

Hello J-King and I hope you are well.

Your post is very interesting to say the least. The idea of going all-in on carnivore goes against everything I've learned and practiced about nutrition since my diagnosis in 2022.

At the same time, your background and personal experience cannot be discounted. To be perfectly honest, I don't think this way of eating is sustainable. However, I can honestly say that nothing - absolutely nothing - has humbled me the way cancer has.

Therefore, if you want to start your own thread on carnivore + fasting, I will follow with a great deal of interest - not to judge or argue against your methodology but to gain a better understanding on how I can achieve mmr and possibly tfr.

Let me know if you do start your own thread.

Thank you.

Hi Scuba,
Based on your approach, the purpose of the fasting is to trigger the stem cell division including dormant leukemic stem cells and kill them with a combination of TKI, selenium, curcumin and your immune system.
My question is, once re-feeding occurs, why would you avoid foods like sugar, etc. that will promote leukemic stem cell replication? Of course, I understand that a healthy nutrition diet low in sugar helps in preventing other cancers.  

Update: I’ve been taking sprycel 100mg for 9

10 months now. Diagnosed last April (age 35)

My Abr-bcl baseline was 57%

3 months 1.3%
6 months 1.7%
 

After 6 months I started Scubas vitamin regimen along with one 48 hour water fast per month. 

Then at 9 months I’m now at 0.55%
 

I couldn’t ask for better results. And I really think this is working! Thanks again Scuba 

Hi Scuba,

 

I just want to better understand this fasting thing. Why is it necessary to not eat at all if fasting (and ketogen) is about no carb?

Like of I would eat only green vegetables (spinach and stuff) for 3 days wouldn't it have the same effect? 

Cheers

Dr. Valter Longo, USC researcher shows that a fasting "mimicking" diet can provide the same benefit as no eating at all as you point out in your question.

Going days without calories of any kind, however, does condition the body faster leading to deeper autophagy and reduce inflamation dramatically. But a keto-diet that is also caloric restricted (i.e. you don't overdo eating fat!) can provide a similar benefit. It just takes longer.

 

I used the "new" ChatGPT so-called A.I. system and asked the question, "Compare low carb, fasting mimicking diet vs no food/complete fasting".

Below is the systems response:

A fasting mimicking diet (FMD) is designed to provide the health benefits of fasting while still allowing you to consume some calories. It typically involves reducing caloric intake for a certain period of time (usually 5 days) while still providing essential nutrients such as protein, healthy fats, and some carbohydrates. The idea is to simulate the effects of fasting while avoiding the harsh side effects that can accompany complete fasting, such as weakness, fatigue, and decreased cognitive function.

The key to the success of a fasting mimicking diet is to keep the caloric intake low enough to trigger the same cellular responses that occur during fasting, such as the activation of autophagy (the cleaning of cellular waste), a decrease in insulin-like growth factor 1 (IGF-1), and changes in gene expression that are associated with improved metabolism and reduced inflammation.

It is important to note that while a fasting mimicking diet can provide many of the benefits of fasting, it may not be as effective as fasting alone, as the reduction in caloric intake is not as severe and some calories are still being consumed. Additionally, the effects of a fasting mimicking diet may vary from person to person, as individual differences in metabolism, genetics, and lifestyle factors can influence the outcomes.

In conclusion, a fasting mimicking diet is a modified form of fasting that can provide many of the benefits of fasting, but it may not be as effective as traditional fasting and results can vary from person to person.

The key idea behind no food at all is that it insures entry into autophagy. Autophagy (pronounced Ah-tah-pha-gee) is a process where accumulated cellular "debris" is broken down and recycled. When calories are not coming into the body, old defective mitochondria are broken down and new mitochondria increase in number and switch more to fatty acid metabolism instead of glucose. This process results in a new sustained energy supply (as long as you have fat on your body), better performing mitochondria while reducing the need for sugar which must be spared for the brain and other tissues. It is this switch from sugar to fat burning which causes the discomfort many feel the first time they fast.

In addition, defective blood cells, which are mostly stored in the spleen, are broken down preferentially into vital amino acids (the main reason I fast). This reduction can be dramatic and sets the stage for rejuvenation of our immune system when re-feeding occurs. It takes 3 days of no food to bring this process into high gear. It is the reduction of calories in which is the main driver of cellular autophagy. Once refeeding begins, blood cell replacement kicks in and in some cases the entire immune system is regenerated with new cells.

And how do you take your supplements? Mainly D3,K2, Selenium and Mg. Do you take all of them at once in the same time?
When you go for your D-Vitamin level checking is the blood sample from the morning or after you taken all the supplements? Would this make a huge difference?

You can test your vitamin D level any time. It does not change significantly one hour to the next regardless. It will slowly rise or slowly fall depending on your sun exposure and/or supplement dose. It takes weeks either way.

I take D3/K2 only when I am eating food that has fat in it (eggs, avocado, cheese, etc.) - generally after noon time. I avoid taking D3/K2 in the evening as it can interfere with sleep as the vitamins are absorbed. Selenium I take with food as well. Magnesium I take 1/2 in the morning and 1/2 in the evening. With or without food doesn't matter.

Thanks for this very interesting thread. I will try out 'fasting therapy' - it seems generally beneficial, and if it helps with the cml, that's a great bonus...!

Thanks for this very interesting thread. I will try out 'fasting therapy' - it seems generally beneficial, and if it helps with the cml, that's a great bonus...!

Hi Scuba,

One more question.
Is there a reason why you do not take Vitamin A and E supplements?

I get plenty of vitamin A and E from food. No need to supplement (in my case).
Almonds are quite high in vitamin E and I eat too many of them, along with broccoli, olive oil (olives) and avocado.
Carrots are high in beta carotene (vitamin A) along with broccoli, spinach and cantaloupe.

I only supplement with vitamins and minerals which I know are in low supply from our soils (magnesium) or no longer available because of our modern lifestyle (indoors, out of the sun (vitamin D) and sterilized food (vitamin K2)).

Hi Scuba

Firstly just want to thank you for sharing your journey.

Wondering if you can provide me with any advice. I was diagnosed with CML in May 2019, 26 years old at the time. I was taking Nilotinib until November 2022 as it stopped working, this may be due to them having to reduce my dose a year prior as I was having a lot of gastro side effects.

I was then put on Imatinib however was only on it for 6 weeks as my side effects were horrible and MMR was continuing to rise. I was then off treatment for 2 weeks so my body could regulate and am now on Asciminib since Feb. My last blood test in March showed my BCR above 1%: I went for bloods today I am hoping they will have dropped, I will get my results next week.

I really want to find a way of getting my BCR in the right range and maintains that range so I can eventually come off treatment. I have never hit the range but was close to it in 2021.

Regarding the fasting, I have ever tried before but would love to give it a go so I can try speeds things up. What would be the best way to starting and all the vitamins you have mentioned should I start taking them?

Hi Scuba

Firstly just want to thank you for sharing your journey.

Wondering if you can provide me with any advice. I was diagnosed with CML in May 2019, 26 years old at the time. I was taking Nilotinib until November 2022 as it stopped working, this may be due to them having to reduce my dose a year prior as I was having a lot of gastro side effects.

I was then put on Imatinib however was only on it for 6 weeks as my side effects were horrible and MMR was continuing to rise. I was then off treatment for 2 weeks so my body could regulate and am now on Asciminib since Feb. My last blood test in March showed my BCR above 1%: I went for bloods today I am hoping they will have dropped, I will get my results next week.

I really want to find a way of getting my BCR in the right range and maintaining that range so I can eventually come off treatment. I have never hit the range but was close to it in 2021.

Regarding the fasting, I have never tried doing it before, but would love to give it a go so I can speed things up. What would be the best way to start or wean my self in to it, and all the vitamins you have mentioned should I start taking them? I also go to the gym 4/5 days a week. If I’m fasting would it be best to not lift weights?

HI Soumia,

The idea behind fasting, especially multiple day fasts (3 days minimum) is to condition the bone marrow so that blood stem cells come out of quiescence and divide when re-feeding occurs. TKI's work best when leukemic blood cells are in active division. Leukemic stem cells is what keeps CML going and restarts CML once treatment stops to test durability of remission. Fasting/refeeding is a way to force the body to "expose" leukemic stem cells out of 'hiding' so they can be killed off.

The idea behind key vitamins being at maximum blood level vs other nutrition is so "pressure" on leukemic cells to die is maximum. This helps TKI's do their job. Key vitamins maximize genetic expression which helps the immune system do its job better. Cancer, at the end of the day, occurs as a failure of our immune system doing surveillance.

Together, fasting plus vitamin support is intended to maximize the chances that both TKI treatment and subsequent cessation are successful.

Fasting is not easy. Especially for women (it's an evolutionary thing). An approach would be to start slowly and try it one day at a time to become adjusted. Try a one day fast and see how you feel. Drink plenty of water and over time try to extend the fast to multiple days. Three days is what is recommended based on Dr. Valter Longo's research to put the body into ketosis and prep it for rapid blood cell generation following re-feeding.

In addition, make sure your vitamin D level is above 60 ng/ml (but less than ~100 ng/ml) and you are taking 200 mcg selenium per day (assuming no Brazil nuts), quercetin, magnesium and vitamin K2. The vitamins and minerals boost the parts of your immune system which attack cancer cells 'naturally'.

Between the fasting and nutrition support, along with your drug treatment you may create an environment in your body which decimates CML. Once you achieve MMR and undetected status, you can start the clock after which you can test for remission without drug.

Hope this is useful to you. It's not a cure, just an approach to give you an edge in fighting CML and give you a chance at ending the need for a TKI to keep you CML free.

Thank you for your reply and advice

Me again.

I’ve been watching interviews and have done some reading on Dr Valter Longo, was wondering what your thoughts are on his 5 day fasting mimicking diet?

I would not "pay" to do his diet (i.e. buy his products), I would simply go Keto and lower calorie intake. His diet is mostly plant fat and limited protein no carbs.*

No carbs is key. When you don't eat carbs, it forces the body to use fat+protein to make needed glucose. This process puts you into ketosis. Ketosis is what triggers autophagy. And autophagy is what triggers stem cell renewal upon re-feeding above calorie burn. It's a much slower process than fasting, but has the benefit of avoiding the intense hunger that comes with fasting.

Buy some ketone sticks (tests for ketones) and when the color turns purplish, you are in ketosis (more or less). Three - five days is needed in that purple zone to trigger the fasting benefits.

Some data - I tried a keto diet to get into ketosis, took me 10 days. I did the fasting and it took one day. Fasting = fast process. Keto = slower process. Results can be the same.

In my opinion, fasting is much faster if done safely. Diabetics should never fast this way.

(*olives, cheese, nuts, and occasional meat (once during the 5 days), etc. Pistaccios are great along with almonds and walnuts).

Ok, I’m with you. I would probably stick to the water fast then.

And just to confirm the vitamins and minerals is that something you take during the fast as well?

So I was checking if the higher dose vitamin D intake would drastically decrease my BCR-ABL, and it didn't.
I'm taking tasigna 2x150 2 times a day.

I was taking around
5k Vitamin D, it borught me to Vitamin D level 80 ng/ml
Vitamin K2 - 120 microgramms
Selenium in the form of brazil nut
Magnesium like 300 gr in supplements but I'm eating a lot of nuts and seeds

I also take MILK THISTLE for my liver.

I tried to promote healthier lifestyle I was cutting sugar intake, lost like 4 KG (I'm 74 kg atm). Doing some exercises as well.

I'm not doing any real fasting however I don't eat after 7 p.m and I just do breakfast at 9 a.m. It is like a 14 hours slot every day.

My BCR-ABL was:
0.06% - not doing anything of the above
0.05% - not doing anything of the above (after 6 months)
0.04% - doing everything of the above for around 5 months.

Unfortunately I don't see any real improvements. 0.04% is still only MR3 if I'm not mistaken.
Years before I have reached 0.012% once but then for whatever reason there was a spike and I have even lost MR3 for a couple of weeks.

So any idea what else I could try ? :D
I was not taking curcumin I think that's the only missing ingredient in comparison with you Scuba. Except the fasting but as I understood that's not for decreasing BCR-ABL.

I will add Vitamin C to my supplement list as well.

It's good you are taking key vitamins missing in modern diets but your vitamin D level is still very low ~32 ng/ml (80 nmol/L). In is woefully inadequate for any anti-cancer benefit. In fact, at 32 ng/ml you are vitamin D deficient when it comes to key vitamin D benefits. All you are doing is preventing rickets.. I can only imagine what your vitamin D level was before you starting supplementing with 5,000 IU's. Vitamn D3 needs to be taken with food that has fat for best absorption. Perhaps you are not taking it with food?

Vitamin D is used by the body for bone health (where blood is made), and immune system activation (anti-viral protection) and a host of other body processes. The so-called normal range of 20 - 40 ng/aml (50 - 100 nmol/L) where you are currently is sufficient only to prevent rickets. It is not sufficient for peak immune function where its anti-cancer benefits are highest (~200 nmol/L). My vitamin D level, in comparison is approaching 250 nmol/L. Check your vitamin D report and verify the units of measurement. ng/ml is not the same as nmol/L, but you can convert between them. 80 ng/ml is great. 80 nmol/L is not.

Regarding fasting. Fasting is "fasting". It's difficult because you don't eat food - any food. And for three days in a row. And several times a year. Research documents what happens in the bone marrow when the body is put through this. It's difficult for me to do, so I understand. Intermittent fasting is fine for weight loss during a 24 hour day, but real fasting (water only) is no food which triggers the body to alter biochemistry in the body.

https://www.mbsf.org/how-to-do-a-3-day-fast-why-you-should
https://news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-of-da...

Regarding Curcumin. I take Curcumin every day - minimum 2 grams per day. Before I went "undetected", I was taking 4 grams per day. And when I was bcr-abl > 1.0% I was taking 8 grams per day. Curcumin, like vitamin D is no cure for cancer. But it is documented to greatly interfere with cancer promoting genetic pathways. This is why I take it.

The point of my original post was in regard to "fasting + TKI", can it lead to a permanent remission (i.e. 'cure')?. Perhaps. I followed this protocol and my long simmering "detected" CML disappeared. I have been in TFR for over 3.5 years now.

Your current results are not unexpected. I would start by getting your vitamin D level up into a therapeutic range. Of course, there is never a guarantee than any of this works any more than taking the Covid shot prevents Covid. Biology is tough that way.

sorry wrong numbers
my D vit was 220 nmol/L which is like 80 ng/ml
I will correct this in the original post

I always take it with food

Who is the new D vit number changing your view?

"Who is the new D vit number changing your view?"

Not sure I understand the question.

I meant that my D-Vit level was 80 ng/mL not nmol/L. I have mixed up the dimension.
So looks like alone the vitamin supplements even high dose vitamin D do not have an effect on BCR-ABL levels. At least not in my case.
I continue the process for an other 6 months.

I could try to add curcumin to my supplement list but as I heard turmeric and ginger changes the absorption in the liver like grapefruit.

So I was just curious what is your view in the light of the corrected Vitamin D-level.

Your vitamin D level is excellent. And makes sense since you are taking 5,000 IU's per day.

Vitamin D, by itself, is not a cure by any means, but it is making "life" difficult for cancer cells. Other factors are at work to keep the cancer "smoldering" (0.04%) at a very low level. The good news about vitamin D is that it activates T-cells which attack cancer (and virus'), helps to prevent metastisis (solid cancers) and helps CML blast cells differentiate. I would not be surprised if your blood report shows 'zero' blast cells (a very good thing).

High vitamin D levels can help CML stay chronic and not progress. But in combination with everything else, can help create a bad environment for CML.

It will be interesting if you do add Curcumin to your protocol (2-4 grams per day) whether that gives your body the extra kick it needs to drive residual CML down to below 0.01% or even "undetected".

I, personally, had no concern taking Curcmin with my TKI (dasatinib). I took curcumin separated by six hours or so before taking or after taking dasatinib. Curcumin can enhance TKI blood levels it is reported, but not significantly so and if separated by hours, curcumin metabolizes very quickly and is gone (2 hours). I never stopped eating pink grapefruit either.

I’m in a mess and really scared..

what mess?

Scuba,

I have consulted with my doctor and he is ok taking turmeric and/or curcumin extract with nilotinib.
So I will try if it has any nice effect on my BCR-ABL levels.

When you say you take 2 gramms daily and used to eat like 8 gramms is it 8 gramms of turmeric or 8 gramms of curcumin itself?
The highest dose extract I could find is 150 mg in a nearby shop so it means I should take 53 pieces of tablets daily to reach 8 gramms of curcumin. I guess that's not realistic.

Research state the the curcumin contents of turmeric is around 3-5% so in theory I should eat around 160 gramms of raw turmeric daily to reach that amount.

So how did you get that 8 gramms daily exactly?

Curcumin is the active ingredient in turmeric. Turmeric is a root and used to spice up food. Curcumin is what makes it yellow.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4686230/

I take Sabinsa's c3 Curcumin (used at M.D. Anderson) which is sold under brand names below:

https://bestvite.com/products/curcumin-1000mg-turmeric120-tablets?_pos=2...

https://www.amazon.com/Turmeric-Curcumin-Complex-Enhanced-Absorption/dp/...

https://www.amazon.com/Doctors-Best-Curcumin-Turmeric-BioPerine/dp/B001J...

Do an online search for " Curcumin C3 complex" and then check the labels of the brands. They should show that their Curcumin product is made under patent from Sabinsa - Curcumin C3 complex. There are other formulations as well.

Back in the day, I took 4 of these in the morning and 4 in the evening (total = 8 grams). Over time I decreased to 2 in the morning, 2 in the evening (4 grams total) and now just 2 in the morning (2 grams total).

I also add turmeric powder to food (mostly soups) as a spice.

jeeeez those are like 60 USD in my country
actually the 1000 MG and 120 pcs is 100 USD.