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Taking the TFR Plunge

I was Dx in September 2016, reached MMR in 82 days and have been >MR.4.5 since April of 2017 all while reducing my Tasigna dose 3 times, the last reduction in September of 2017 to 150 mg 1x/day, 25% of starting dose.  The dose reductions were due to multiple nasty side effects that have mostly subsided.  Heart palpitations have continued but have been helped by beta blocker but that has caused GERD induced cough for which my primary doc prescribed Pepcid.  So I keep adding medicines to counter the side effects of the last medicine added and the merry-go-round just continues.  I am incredibly grateful for the rapid and deep response that I have had, but I want my pre-CML life back if I'm lucky enough to get it.

I just had my 6 month PCR which was undetected. I met with my oncologist this morning and he all but ordered me to try TFR.  Mind you, this was the same doctor with whom I fought tooth and nail for 2 months to get his blessing to do my first dose reduction in March 2017. So after thinking about it and talking to my wife, I have decided to try TFR.  Tomorrow will be my first day without a TKI since October 5, 2016. I don't like the idea of monthly PCR's, but I also don't like the idea of not knowing if TFR will work for me or not, so the only option is to try it. I have a bunch of irrational fears but I also understand the science and know that there is virtually no risk to trying.

Enough of my rambling - wish me luck.

CMLJAX - Oustanding! I will be right behind you with my second TFR attempt in September.

We wish you luck.

Wishing you all the best. Please keep us posted

Wishing you all the luck, please keep us posted. 
 

Diane

Fantastic good luck for a successful TFR, I hope to try later this year, dx 2015 took Tasigna for 4yrs,changed to Dasatinib a year ago because couldn't handle side effects any more, Dasatanib has been great so far.

Wishing you the best of luck in your TFR journey!

Vicky

Wishing you every success in your trial for TFR. Did you decide to just stop rather than try a period of dose reduction? 

Sandy

Hi Sandy:

I reduced dose 3 times in 2017 from 600 mg/day to 150 mg/day. Since I was already at this very low dose, I just stopped.