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Gleevec has run it's course


Hi all, so good to have this resource and all your input!

I have had CML for almost 3 years, + for Philadelphia gene, and been on Gleevec 400 daily (generic) aside from an initial week or so on Spyrcel, which cause intense muscle spasms in both calves and put me in the hospital for 4 days. Recently, as you may have read from my post "uh-oh" my numbers which had been steadily going down began to creep up. The last one was in October 2018 was 0.116%, dropping a 0 from 0.004%.  My oncologist at Sloan in NYC wanted to redo the bloods in 6 weeks which was yesterday to see if it was some kind of blip or a true reading. So now I wait for results. What opinions have you about which TKI should be the next step, and any side affects you may have experienced.

On the Gleevec, I gained about 15 pounds, eyelids are swollen (no more eye make up) and occasional joint pain in my fingers.

Thank you all for your input!! Stay well!

Your options are Sprycell, Tasigna and Bosulif.  I only have experience with Tasigna, which has worked very well on my CML.  I had a bunch of not so typical side effects that have mostly gone away with time and dose reduction from 600 mg/day to 150 mg/day.  My remaining side effects are more typical of Tasigna, including mild dry mouth, itchy scalp, occasional irregular heartbeat (benign).  If you have existing cardiovascular conditions, full dose Tasigna is likely not the best option for you. Also, Tasigna requires fasting for 2 hours before and one hour after taking a dose, so you have to be willing to do that twice a day. I have an intimate love/hate relationship with my Tasigna but it has done a tremendous job so far on my CML (MMR in less then 90 days; <.003% since April 2017).  That said, the other TKI's would probably have worked too.   I will let others who have personal experience with Sprycel and Bosulif share that with you. 

Let's hope the "uh-oh was just a blip and the next result goes back down.  I had a small blip up last March but have remained steady ever since so no changes were required.