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PCR rise after a year in TFR


Hello everyone

After a wonderful but enforced year off all TKIs with my BCR-Abl levels fluctuating around 0.003%, my latest test has come in at 0.01% after 12 months and I’ve just about lost MR4 now. I have my appointment with the doctor next week and need to decide what the next steps are as I know she will insist that I restart treatment. The consultant who phoned me with my results also said that this is an indicator that I have to restart sooner rather than later. Although I know that the TFR protocols now define failure as loss of MMR, my counts are moving in that direction and psychologically I feel I should restart too as it will give me peace of mind.

Bearing in mind that 100mg dasatinib caused my lymph nodes to swell and 400mg imatinib caused severe myelosuppression (both of these side effects happened after 3+ years of treatment) I’m wondering which of the four possible options to choose:

1) Try to convince the doc to let me carry on without treatment until I lose MMR (I doubt she’ll say yes given this was a forced attempt to stop and against medical guidelines)
2) Try to argue for 50 or even 20mg dasatinib (apart from the lymph nodes I felt very good on this drug)
3) Argue for a reduced dose of imatinib
4) Start on asciminib and, if so, whether to argue for a lower dose than the starting one.

I would be grateful for any suggestions or advice! Buzz, I know you have been tracking TFR attempts very closely so I would be particularly grateful if you could provide some guidance – I know your readings fluctuated as high as 0.015% in your successful TFR.

For interest, my BCR-Abl counts after stopping treatment on 18 August 2022 were as follows:

August 2022: undetected (the only such result I've ever had)
September 2022: 0.003%
October 2022: 0.003%
November 2022: 0.0042%
January 2023: 0.003%
April 2023: 0.003%
June 2023: 0.0039% (loss of MR4.5)
August 2023: 0.01% (borderline loss of MR4).

Thank you everyone and enjoy the weekend!

From a beautiful spring day in South Africa


Martin, good to hear from you but sorry to hear that your PCR has increased to 0.01; but you still have a very long way to go to reach clinical relapse defined as loss of MMR, 0.1 ... as you mentioned my detected high over the last seven years of TFR has been 0.015+. I would urge you to resist restarting a TKI until there is much clearer evidence that you are indeed going to relapse ... you aren't there yet or even close to that point. Test again in another two months. Reminder, any CML PCR reading of 1.0, or less, presents no real heath threat to the CML patient.

Referencing the Destiny Trial, 38% of those who went into the study with stable PCR readings of between MR3 (0.1) and MR4 (0.01) remained in TFR at the conclusion of the study.

If you do clinically relapse you should restart on no more than Imatinib 100mg ... after not taking any TKI for over a year and holding your own, that will be far more TKI than you need to quickly regain an undetected status. Furthermore, with another quarterly undetected PCR, you can reduce your dosage to 50mg/day by taking the 100mg every other day. Even Imatinib 50mg will be far more TKI than you need to maintain an undetected status.

Wishing you the best,

I have tried TFR and in two months went up to 0.014.I started dasadinib immediately but,if you ask me...I have regrets that I didn't t wait one more month to see what will happen
You are too low yet.My opinion is NOT to restart treatment yet
But ifi you restart try very low dose eg 20 mg dasadinib

Hi Buzz and Snowman,

Thank you both so much for the prompt responses and for the good advice. This is exactly the kind of information I was after and I'm so grateful for your responses.

I know I probably could stay the course and test again in a month, but psychologically it is difficult and I've come to realise that I'd be better off mentally taking some kind of treatment right now, so I'm going to argue for a dosage of 20mg Sprycel and see what the doctor says. I felt very good on that drug and the lymph node swelling that arose after 3 years was much easier to tolerate than the myelosuppression caused by imatinib.

I'll let you know what happens after my consultation with her on Wednesday.

All the best and thanks again


Good luck on Wednesday, Martin. Remember you have agency over your own treatment and must consent to whatever your doctor asks of you.

Absolutely nothing wrong with putting up a bit of a fight and refusing to start on anything other than 20mg dasatinib if you want. Most (good) doctors will value the dialogue.

Best of luck, but if I were in your position I think I’d hold firm on TFR for a bit longer. How often do we see people have a few results going up, only to be followed by a down? Don’t leave yourself wondering what could have been.


Martin, just so you know, at a greatly reduced TKI dosage it is highly unlikely that you would experience the side-effects that you had on full dosage, regardless of the TKI you choose.


PS: David is right; your 0.01 PCR reading could even be a lab error, which happens all too often.

Hi Buzz, David and Snowman

Thank you again for all the replies and very good advice. What you say is perfectly logical but, as Alex often tells me, others speak logically to you but you don't speak logically to yourself. I really appreciate all the time and effort you have taken in giving me this information.

Turns out that my doctor agrees with all of you and thinks this could easily be a blip and not cause for concern. She told me that I must just stay the course and test again in 2 months' time, so this is what I will do (although I reckon this could be a little hard psychologically, especially when November rolls along). However, she did say that if there is another significant increase in November I'll restart, and then we will have a long conversation about which drug to use - her opinion is that I'll almost certainly have to go back onto treatment in future.

So it's another 2 months of grapefruit for me. Once again, sincere thanks and congratulations on being CML experts. As always you're spot on!

Best wishes


Martin, kudos to your doctor and if you should have to restart in November, hold fast to what David had to say and be insistent on restarting on a very low TKI dosage, preferably on a TKI that you have been responsive to. Your CML will still be at a very low level at that time and it should only require a very slight TKI nudge to push it back to undetected.

Wishing you continued success,

Martin - Coming to this party late - would love to know what November will reveal. If you go back on dasatinib, argue for the 20 mg. I've been skating along on that for years. I keep a small asymptomatic pleural effusion going, but also two zeros to the right on my PCR, so it's a trade-off.

Hi Martin, November is here and we will be anxious to see your test results.

Wishing you the very best,

Hi everyone

So grateful to you Buzz and kat for thinking of me. I tested yesterday and am awaiting results - my appointment with my doctor is on 7 November.

I promise to update you as soon as I know! Fully expecting to have to go back onto treatment but that's my way of preparing myself I guess!

Thanks so much again.


Oh and I've had to change doctors as my current one has had to take leave for two months. The new one is quite progressive and willing to experiment so who knows...maybe 20mg dasatinib is on the cards.

Well, as always all you kind folk on this site got it quite right! I've just had my call from my doctor and the BCR-Abl has declined from 0.01% back to 0.0067%, so this is great news for me. She reckons that it's common for the numbers to fluctuate, just like you said, Buzz... and all this means is that I must keep monitoring with the blood tests. Just like everyone said, MMR is the crossover point where I'll have to restart, and I'm over the moon that I can still stay off treatment during December.

Thank you once again everyone for the kind words and for the constant support and encouragement. Wishing everyone good health and everything of the best for the last couple of months of the year.

Martin, delighted for you. Enjoy the continuing break.

Martin, that's great news. In that you are very unlikely to lose MMR any time soon, see if your doctor will allow you to test again in three months. Testing monthly gets really old, really fast, especially when it shouldn't be necessary.

Wishing you continued success,

Martin, this is great news! And kind of a boost for me today, actually. After a July 0.009 put me perilously close to losing my precious second zero to the right, I dutifully waited for my regular return visit which was the same day as yours, Nov. 7th. It came back 0.016! This is a number I haven't seen in 5 years. I came unhinged. All the therapy I did on "catastrophic thinking" went right out the window and I returned immediately to the same emotional state I was in when I was diagnosed in 2009. Turns out, all that is still under the surface (or should I say, the rug?) I was wrong to be complacent about my status quo. I will be hearing from the doc soon, but I dread so much what I think is ahead: WAITING (a misery everyone here is familiar with), retesting, maybe my very first bone marrow biopsy to see if mutations have spoiled my halcyon days of dasatinib, multiple cycling through the next 3 meds with new side effects, and lots and lots of trips to Baltimore. I don't want to hijack your thread; I will start my own on this. But I did want to tell you congratulations on the win at this lottery of ours, and also that your jump back to safety gives me a little sliver of hope today.