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Trying TFR

Hello, hope everyone is well.I recently had surgery and was told to stop Dasatinib for a few weeks .I haven’t restarted yet to see if I could try TFR been off for 9 weeks .My bloods have just come back at 0.0030% from undetected ,which I have been for quite a few years .Any advice ,do I continue till my next blood test in 3 months or go straight back on my meds .Thank you .

Hi Felix

I'm not a doctor, but I had to try TFR because of intolerable side effects from both dasatinib and imatinib, and here is what was done with me:

In the first six months, I had monthly BCR-Abl tests. It seems that in many cases the BCR-Abl comes roaring back quite quickly when people stop, and it is often within the first three months that they have to restart treatment. So that's why they monitor it carefully in that time.

Then for another 18 months I had tests every three months. Now, after three years, I have tests every six months.

A jump to 0.003% is not a reason to go back onto the dasatinib because fluctuations at low levels are common when trying TFR. Mine has bobbed around up and down for three years (highest was 0.011%) and my doctor told me we would only restart once it reached 0.1%. Several other threads on this site will confirm this practice. So while I know it's scary to see the numbers jump up, it's still below the MR4.5 level of 0.0032% so you're in a very good place right now.

Let me just add that I would not try TFR unless under the guidance and monitoring of my doctor - I've heard of some people trying to do it themselves without informing the doctor and I think it needs careful monitoring and follow-up.

Here's hoping you can stay off the medication!

Best wishes

Martin

Hello Martin ,thank you so much for replying to me and for all your advice ,much appreciated .I feel so much better off the meds at the moment so ime hoping I can stay off .🤞🏻🤞🏻🤞🏻🤞🏻🤞🏻🤞🏻