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Treatment Free Remission (TFR) update:

 

I am happy to report after 3 months of trying treatment free remission (TFR) my PCR result came back as "undetected".

This is good news and confirms my experiment that I did not need monthly testing during this drug free period as is the normal protocol*. My next PCR test will again be in three months this September. If I remain "undetected", I will move to a six month testing schedule which I was on when I was taking 20 mg dasatinib.

I can't tell you all how good I feel to be taking NO tyrosine kinase inhibitor. I am hopeful I beat CML and my immune system has restored its own ability to mount a defense against any new CML re-start with focus on nutritional support as well as vitamins D & K2.

3 months in - so far so good. Six months will be key in terms of odds moving in my favor. We're still 50-50 that TFR will work, but looking good.

(* normal TFR protocol is monthly testing until baseline established showing little or no relapse, but I knew my CML would be slow to come back if it did come back and that 3 months would be fine to follow. I am pleased I will be able to continue 3 month testing.)

That’s really good to read!!  Hopefully your future results will also read good results 🤞

Thanks Mick -

Additional emerging data on TFR:

https://www.nature.com/articles/s41375-018-0264-0

"Serial high sensitivity testing provides a new and unexpected finding of gradually reducing CML cells in patients in long-term TFR."

Data is emerging that even those who have CML detected by a higher precision test (digitial-DNA PCR), show their leukemic signal continues to fall during TFR. Patients who make it 3 years TFR have a greater than 90% chance of permanent remission for the rest of their lives.

As many know, I have a working theory on the biology of how this works involving decreased ability for low CML cell populations to mount a protein signal telling the body's immune system to stand down. CML cells are easily created (9;22 translocation), but only some of us progress. The general populations immune system keeps CML from becoming detectable (mostly). Whatever causes CML to progress in the first place is eliminated with successful long term treatment and the longer one remains undetected up to about 5 years, the better the odds.

I tried Cessation once before while I was still detected (PCR ~ 0.01%) and although my CML did not come roaring back, it was clear to me I would eventually lose the battle (up two months, down one month revealing a slow up and down climb). This time I remained on drug for a full 4 years in undetected status before trying again. I believe this is key and would suggest to anyone interested in TFR to wait at least 3 years, preferably 4 to maximize success chances before stopping therapy.

So far so good ... If I remain undetected in September - I am going to celebrate.

Good news,happy for you :) lead the way :)

Thanks Scuba for letting us know. So good to follow your new venture in TFR.

It will be 3 years in TFR for me in October. I test now every 4 months and will probably go to 6 months after October’s test.

Dear Scuba..... great news for you. Well done for continuing to be proactive and making informed choices for your own treatment....! Looks like it is paying off. 

Sandy 

Additional information on 'why' TFR works and what it takes to maximize likelihood of success:

Key take-away for me is support for my ongoing hypothesis that CML occurs due to an initial failure of our immune system to stop it naturally (probably for all cancers). And that once CML is reduced substantially - way below detection threshold (i.e. DMR), the cancer itself is no longer in a position to send out the "save me protein, I belong here, stand down" order to T-cells. Once the population of CML cells is so low, the immune system regains its ability to keep control without the need of a TKI.

From the paper,

"In conclusion, we hypothesize that in a setting of high leukemic cell load in CP-CML patients at diagnosis, immunosuppressive mechanisms predominate, mediated in part by increased MDSCs that are part of the BCR-ABL1–positive leukemic cell clone.45  MDSCs inhibit NK cell cytotoxicity, limit CTL-immune responses via the aberrantly expressed PD-1/PD-L1 pathway, and promote Treg activation and expansion.58,59  Enhanced PD-1 signaling further supports the development, maintenance, and immunosuppressive function of Tregs.60  Tregs dampen immune responses by suppressing the function of effector T and NK cells.61  When successful TKI therapy reduces the leukemic cell load, suppressor cell activity, and PD-1 expression, there is consequent reactivation of the immune effector response."

Scuba best of luck. After failing TFR after 17 months, I have spent a year back on 400 mg imatinib I got back to 0.000 BCR ABL in 4 months Subject to one more 0.000 from a sample last week I will reduce again to 200mg. Not sure if I will have another TFR attempt - will make sure it is stable for longer than a year at 200mg.

Hi Alistair,

Consider switching to low dose dasatnib. It may very well 'mop up' your remaining CML which imatinib is only controlling and not eliminating. There is data suggesting TKI rotation can lead to very deep remission (DMR) - perhaps sufficient to induce a long lasting treatment free remission which could be permanent.

As the article linked above points out, CML needs to be very deeply reduced before your immune system takes over. Low dose dasatinib (20 mg) may bring you there and with fewer side effects than imatinib.

That is awesome news Scuba CONGRATULATIONS…..

Great news.  Made my day!

Great news!

I'm also coming up to 30 months into TFR after reducing Dasatinib from 100mg to 50mg for about a year, then 20mg for another year.

I've had to learn to live with a bi-monthly PCR check that has settled around 0.02%, where it has now been for about a year) which was a worry as it rose from various undetectable/0/003% levels prior to stopping - you become convinced that it won't stop going up, but it did. So if you see it go up a bit, you may be a bit like me.

10 years on from initial diagnosis, I feel very fortunate!

 

Rod

I was told by M.D. Anderson researchers that TFR can be maintained as long as PCR values are < 0.1%. Given that I am "undetectable" three months into my TFR experiment, if I do become detected, I'll have to decide whether to resume therapy. I will likely resume because I feel my nutrition protocol focused on my immune system should keep CML well below detection status (Curcumin, Vitamins D3 & K2, selenium, etc.). And if it doesn't something is amiss.

 Also, if I remain undetected, I might take 20 mg dasatinib for a week at a time a few times per year given early research it works with quercetin to remove senescent cells (anti-aging).

Hi Scuba ,I am interested in Quertecin. Could you tell me how much you take and how often ,and can you take it long term .Thank you ,Denise.

I take 800 mg per day in the morning on an empty stomach.

It is a strong anti-histamine on its own and great during allergy season (pollen) - no sneezing.

So happy for you Scuba!!