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Another 3 months of TFR done - slight rise but still hopeful

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Hi everyone

This is just an update on my involuntary TFR attempt. I'm just short of 11 months off the imatinib now and got my latesr PCR test back today: I'm still safely in MR4 with my BCR-Abl result at 0.0039% on the international scale. This is a slight increase from the 0.003% that it was 3 months ago.

There is a comment on the lab report that says that "Loss of previous molecular response is noted" and it even suggests a retest and a bone marrow biopsy to check for loss of response. I'm sure this is because I've moved from MR4.5 (below 0.0032) to just above it. Personally, I think that this small rise is within the noise of the test but I'm hoping that my doctor doesn't panic and put me back onto a drug (which would be asciminib) as I feel fantastic off the medication. I'll see the doctor on 5 July and will post an update on what she decides to do.

But when I think where I was a year ago and compare it to where I am now, I'm really grateful for how lucky I have been!

Best wishes for ongoing recovery to everyone

Martin

Hi Martin; wishing you continued good luck. I don't see any reason for you to retest or to have a bone marrow biopsy. You are a very long way from losing MMR, 0.1, which is considered relapse during a TFR attempt.

I am going on seven years of TFR and haven't been undetected since 2017. My highest reading has been 0.015.

Thinking your doctor will just have you test again in another three months. Will be interested if your doctor says anything different.

Buzz

Martin, that is wonderful news!! Thank you for updating us! Glad to hear you are doing so well.

Olivia

Thank you Buzz and Olivia for the kind messages! I'm really interested to read about your experience with TFR, Buzz, as this is going to be incredibly useful to tell my doctor tomorrow. I believe that I can stay off the drugs a while longer and I'm glad to have some evidence to argue my case!

Thank you once again and I'll update you tomorrow.

Best wishes

Martin

Best of luck with your doctor, Martin. Loads of patients in successful TFR hover around the MR4 mark with no need to go back on medication.

“Loss of molecular response” is generally a term reserved for going above 0.1% which you are miles away from.

David.