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Could I be resistant to sprycel

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Hi.   So I’ve been on sprycel now for 3 years, 80 mg in the last 8 months from 100 mg.   First line of treatment was Gleevec for the first 6 months.   I started out 75% cml + Philadelphia chromosome.   They only did BCR test. I’ve never had a biopsy done.    I’m pretty tolerant to sprycel.  Never had any side effects except for the musculoskeletal pain, some edema.   Now I think the rash I had recently that last close to 6 months was related.  But not sure.  Anyhow just got my results back and my numbers increased slightly from .006 to 06.   Doctor didn’t seem to be concerned.  But when I went back on my notes he wrote.  He put that I may be resistant.  To check in 3 months again.  He also stated that he doesn’t think I’ll ever be TFR  I’ve read on here few of you are getting good results with lower dose.   But they refuse to put me at a lower dose.    Any thoughts on my test and it advice anyone can give me?   It’s so frustrating.      Thank la for any advice out there.  
 

sherley

First I would say that it seems incredible that they did not do a biopsy when you were first diagnosed.  Second it is probably a good idea to wait 3 months to confirm that it is really rising and not a lab error.  If there is resistance I would be adamant that you get a biopsy to look for mutations and determine what is the best TKI to proceed with.  The good news is that you seem to have responded to TKI therapy so another one may well just get you where you need to be.  Keep us posted.

Thank you for replying.   That makes sense to wait another 3 months in case of error.  Also I’ve had three doctors in the past year Bc they moved and one of them from last year wanted to do a biopsy  but the specialist that participates in clinical trials told me it was unnecessary at this point.  My first doctor that first treated me 3 1/2 years ago never suggested one.     I feel pretty lucky too in response to treatment.    I plan on moving out of state soon.  So I’ll be researching doctors again.   I will ask about the biopsy then.  Thank again.   

Yes, wait and retest, watch for a trend.  Also, don't get too upset over the biopsy thing - a lot of us never had a bone marrow test done at diagnosis.  There are other factors they can look at that give them confidence to diagnose CML and not something else.  I know it's now part of the protocol, but it wasn't 13 years ago!  Anyway, I think it can certainly help in guiding the choice of TKI, and mutation studies will show if you're resistant to treatment.  But I believe they won't consider it necessary unless you lose MMR (.1)  

Thank you for responding!    I certainly will wait for my next appt.   I need to have a talk with my oncologist to lower my dose.    It just totally drains me every day.  I’m pretty much a very healthy person.  I  going through a lot of stress for the last year.    I know I need to be more motivated to fight this disease.   Thank you for the advice.