Remission Update

That’s awesome congrats ! I hope to be there one day. My doctor makes it seem like I have no shot at the treatment free plan.

I was wondering if you take any mushroom supplements ? They seems to have a lot of anti leukemia benefits.

I do take mushroom supplements, but most of the time, I just eat a serving of shiitake mushrooms. They contain AHCC which is strongly anti-cancer by enhancing your immune systems natural killer T-cells (the ones that go after cancer).
I eat them because they taste good as well as being good for you.

https://www.nature.com/articles/d42473-020-00414-3

Wow 4 years amazing! Do you mind if I ask what TKI or TKIs you were on and for how long? Also did you have a TKI that became ineffective at some point? How long have you been on “shrooms”? Sorry for all the questions but your experience with TFR is encouraging.

"...what TKI or TKIs you were on and for how long? Also did you have a TKI that became ineffective at some point? "

I was started on 400 mg imatinib which managed to reduce my white cell count back to normal and alleviated my symptoms, but imatinib did not lower my CML very much or affect my blast cell count. After a few months of this, my first doctor wanted to increase my imatinib dose and I decided to seek out a top researcher in the field, Dr. Cortes. Dr. Cortes changed my drug to 70 mg dasatinib (he did not want to start me at the protocol dose of 100 mg given my blood count profile). Despite the lower starting dose, dasatinib still cratered my blood system (neutrophils went to 0.1) and I had to stop all therapy after only a week.

But dasatinib also dropped my CML (FISH) from 80% to 30%. By this time I was taking 8 grams of Curcumin per day based on my own research. I was off all therapy for about two months in order to let my blood system recover. It was a very slow recovery, but of interest, my CML did not increase, it stayed the same at about 30% and my doctor was very curious why my CML did not start rising back as he has seen in other patients. It was then I told him about my taking Curcumin. He smiled. I'll never forget that smile.

I resumed dasatinib at 20mg dose and again my blood count collapsed. My doctor did not want to give me neupogen to stimulate my blood, opting instead to stop therapy again and wait for my blood system to respond back. While on 20 mg, my CML collapsed from 30% to zero percent (FISH) and I achieved cytogenic remission (CCyR) and I began testing with PCR (bcr-abl) to monitor CML at the molecular level. PCR showed 1.0% (FISH & PCR percentages are not the same).

After another month of off drub, my blood came back to a level where I could try 20 mg dasatinib again, and again my counts plummeted but not as bad. My dorctor wanted me to keep "pulsing" with 20 mg dasatinib; on again off again to see if I can adjust. After two more on-off again dose interuptions, I finally was able to tolerate 20 mg dasatinib without my blood system cratering. It lowered, but within a safe amount. It was at this point I stayed on drug. For the next two years, my PCR fell from 1.0% to 0.1% and slowly declined (2010-2013). It was during this time I learned all I could at the biochemistry level regarding CML amd the genetic pathways which favor CML. I learned about nutrition I could apply which down regulates those pathways and perhaps help dasatinib do its job more effectively.

In 2013 I learned about vitamin D and that I was very deficient. I slowly raised my blood level from around 20 ng/ml to where it is now at 70 ng/ml. Over the course of several months, when I next tested for CML (bcr-abl), my PCR fell to less than 0.01%. By then I started adding selenium, vitamin K2, "shrooms", more vitamin C, zinc and fasting regularly. Within a few test cycles, my CML fell to "undetected".

I decided to "test" TFR even though I had not been undetected long (only a few months). My doctor advised against it, but I was curious. I wanted to see if my nutrition protocol alone could keep me "undetected".

Within 3 months I became detected again. And within six months my PCR rose to 0.03%. Over the next 3 months my PCR rose as high as 0.06%, but then fell back somewhat. My doctor, although against my trying TFR so early, now that I did, was curious too and suggested I might just stay off drug to see if my CML would stabilize (at a low level) without dasatinib. By then I had dropped my curcumin dose from 8 grams per day to 4 grams per day (C3 curcumin is expensive). I told my doctor I'll resume dasatinib 20mg to test that I can regain "undetected" status again before trying again. I did - and within 3 months, I was back to "undetected".

I stayed on drug for another 3 years while undetected until 4 years ago when I went off drug a second time and haven't looked back. I remain undetected.

My working theory is that my approach "burned" out the CML stem cells over time so CML could not restart again "easily". Low dose dasatinb was quite effective (more so than higher dose) at attacking CML. Selenium, curcumin and 'shrooms' were down-regulating cml genetic pathways (nfKb, Jax2) hampering growth. Everything I was doing was designed to make life miserable for cml cells.

Pojo if you search the forum posts for "Scuba" you will find all his history and I'm sure find it interesting and useful.

Thank you Scuba I will read and re-read your explanation. I already got the shrooms and in fact eating them in my soup as I write. I will give curcumin a try along with Vit D. When I give TFR a try I will let you all know. That will be in an about a year or 14 months. Just a note, I think I over stayed my welcome with Imatinib, even after my doc wanted me to switch. I should have done it earlier. I stayed on imatinib 11 years, partly because it went into generic status and was cheaper. The side effects from that drug drove me crazy. It eventually stopped working. At that point I had a legit reason to switch.

Thanks AlastairC, I will try out the search function.

Congratulations Scuba,
I would also like to thank you for, on numerous occasions your advice you’ve given to many of my questions I’ve raised on Cml support.

Peter

I came across a summary article on relapse rates for those in TFR (see link & abstract below). The odds are quite good if you make it past two years.
My first TFR attempt was not successful, but I was not at "undetected" having a residual level of <0.01%. My second attempt was after 3 years while on low dose dasatinib and at undetected.

My experience suggests, 'if at first you don't succeed, try try and try again'. But it is prudent to achieve deep molecular response first (i.e. "undetected) and remain undetected for at least two years preferably three years before trying treatment free. The good news is that trying to go off drug (when in MMR), is safe to do. CML is a slow disease (at this stage) and gives you time to see if you relapse and if you do, going back on drug has a very high success rate (>95%) of achieving prior status.

https://ashpublications.org/bloodadvances/article/4/13/3034/461237/Late-...

Abstract

Treatment-free remission (TFR) is an opportunity for patients with chronic myeloid leukemia (CML). Reported cumulative incidence curves of molecular recurrence (MRec) arbor a 2-phase shape with mainly early events, but also some late events (late MRec [LMRec]). Having discontinued our first patient in 2004, we have access to a prolonged follow-up, enabling us to characterize these late events. Over 15 years, 128 patients from our institution were registered in the Stop Imatinib (STIM; A Study for Tyrosine Kinase Inhibitors Discontinuation [A-STIM]) trial. MRec was defined by the loss of major molecular response (BCR-ABL1IS >0.1%). At the first TFR attempt, patients had been taking a tyrosine kinase inhibitor for a median of 7.1 years and in BCR-ABL1IS ≤0.01% (MR4) for a median of 4 years. The median follow-up of patients in TFR was 6.5 years. The TFR rate was estimated to be 45.6% after 7 years. For 9/65 (14%) patients experiencing MRec, recurrence occurred after 2 years in TFR (median, 3.6 years). The residual rate of MRec after 2 years was estimated to be 18%. The probability of remaining in TFR was 65.4% for patients having experienced fluctuations of their minimal residual disease (MRD) (at least 2 consecutive measurements BCR-ABL1IS >0.0032% or loss of MR4), whereas it was 100% for those with stable MRD (P = .003). After 2 years in TFR, we observed an 18% residual rate of LMRec. These late events represent 14% of all MRec and occur in patients with fluctuating MRD measurements. A long-term molecular follow-up therefore remains mandatory for CML patients in TFR. The A-STIM study was registered at www.clinicaltrials.gov as #NCT02897245.

> My experience suggests, 'if at first you don't succeed, try try and try again'

All depends on how badly you didn’t succeed, I guess. After my recent TFR failure, I won’t be trying again!

Scuba how long are your fasting terms? I too have been fasting on a regular basis. 2.5 days is my longest so far. But I try to do it once per week. Although some of my side effects flare during the first day of fast, I am thinking, due to what I ate the previous day. This week I splurged on chocolate and tangerines prior to the fast and I couldn’t get through the first day, had to eat to relieve the effects. Also you caught my attention when you wrote “.. stem cells are only targeted while dividing.”” That is an interesting image and notion to contemplate. Correct me if I’m wrong but I am of the belief that the stem cells are hidden away in the marrow. I didn’t think the TKI got too close to those cells.