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Hi all
I just took my PCR other second month of TFR and unfortunately went up 0.012....I am trying to contact with my doc to tell what to do.I very disappointed......
Had anyone here a similar experience?
I think it would be premature to get too disappointed by this one result. My TFR attempt was deemed to have failed only when I got to 0.1% at 17 months. My doc would definiiely have said about this to see what the result is next month; if it continues to trend up again over another couple of results then you may need to accept that TFR isnot for you at the moment.
I had a phonecard with my doc and he told me that is better to go back to tki because I am < MMR 4....To be honest in one month I went from undetected to 0,012 is a big jump.....So I ll start again at 70mg (is the dose I was taking) .But this time will go to tfr again after3-4 years with small steps.My plan is to reduce my dose to the minimum(20mg Sprycel) and if I stay unditected I will try again.....for now I just try not to take me down......I am very disappointed but....what can you do...
I 'failed' TFR on my first attempt as well. I went back on my TKI, 20 mg dasatinib which quickly dropped me back below 0.01% and then shortly after I went "undetected". I stayed at that level for 3 years before trying my second TFR which I am in right now (1.5 years drug free, undetected) and so far successful. I will have a PCR test next week to see if I am still 'undetected'.
Keep trying - over time, the leukemic stem cells will burn out. The good news is CML as a fatal disease is not in your future.
Strongly consider lowering your dose to 20 mg. You may very well regain 'undetected' status on that dose and will have fewer if not zero side effects you can feel. In the case of dasatinib, more drug does not equal better response. You can always increase your dose, but I have a suspicion you will do just fine on 20 mg.
(*this is not the case for imatinib which is dose dependent up to its toxicity)
This exactly what I am planning to do Scuba!It is going to be difficult cause my doc is not a fun of reducing the dose.....
The only concern I have right now is if the pcr after one month in Sprycel will have below 0.01 because I took the results 12 days later and I assume that this days went up to 0.013(to that level I was 30/8).....
Hi all!
I just had a phonecall with my doc.I wanted to tell him if we could reduce dose 70mg to 50mg.
He didn't remember that the last 9 months before trying tfr I was taking 70mg and he told me that I had to start to 100mg because my PCR was >MR 4 and because of my bodywheight🤔Does the bodyweight affects if a tki works or not?(I am 1.81cm and 88 kg)
In the and he agreed to continue at 70mg and if in one month my PCR goes up we will go to 100mg...
Good idea to reduce. With dasatinib less seems to be more, and you also lower the threat of having pleural effusion, so go for it, and good luck.
pigeon