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Hi All, I was diagnosed with CML 10 years ago. Within 18 months on Sprycel, my condition was undetectable for over 8 and 1/2 years. I decided to go off Sprycel at the beginning of the year, to see what would happen. My recent blood work, including white blood count, came back as normal actually almost low. However, my BCR/ABL PCR test results came back at detected at 1.208%. I will not see my CML doctor until May 1.

What does this all mean? What do I do? Does a 1.208 detection still require drug therapy? Did I just take my own life? Any advice much appreciated.

You didn’t take your own life. But it would seem that trying to stop the drugs didn’t work out as you had hoped.

You’ll start to take your TKI again, and your PCR will go back down. With all the studies that have been done on TFR (treatment free remission) virtually everyone who lost their response regained it when restarting medication. Those that didn’t had unusual circumstances, as I understand it. 

I know this is stressful for you, which is totally understandable. But all that has happened is that you gave stopping a try and it didn’t work out for you. Nothing ventured, nothing gained. You’ll just have to go back on the meds.

Maybe once you regain a strong response you might consider lowering your dose, rather than trying stopping. I suppose that all depends on your reasons for stopping in the first place.

David.

Hey David, thanks for the quick reply! I decided to discontinue TKI and try TFR after having a Complete Molecular Response for 8 going on 9 years. Was really hopeful that TFR would work for me. Really disappointed. I only need a reduction of .2 to achieve a MMR again.

Are there any good articles regarding resuming TKI therapy and outcomes? When I started TKI therapy in 2009 I was somewhere between the accelerated phase and acute phase. Initially started out on 140m.g. of Sprycel, then 100mg, then 75mg and was down to 50m.g. for years now. It's my understanding that 50mg of Sprycel is the standard dose for all new diagnoses. So, will I start out on 50mg again? I know that some of my other doctor's patients are on 25mg of Sprycel and maintain CMR. 

Let me know and thanks again! Philip

Philip,

I take 20 mg sprycel and remain PCRU ('undetected'). Consider starting at that does and see if you PCR plummets which I suspect it will. You can always increase dose.

Think that's what I've been thinking after having a few hours to think about it if ya know what I mean. I was taking 50mg of Sprycel for years. Went undetected until I stopped TKI therapy 3 months ago to see what would happen. Now I know. For me, side effects were the same on 50mg of Sprycel as if I was on 75 or 100mg. My most recent lab results came in on Saturday. Sent the office a message. No reply yet understandably. 

Did you have less side effects on 20mg?

I feel no side effects on 20 mg.