What is the longest time on gleevec?
Posted 10 April 2015 - 08:44 PM
I'd like to stay on gleevec for as long as I need tki's. Is that reasonable? Or does everyone go through this movement from one drug to another? Has anyone been on gleevec for say 20 years, and never changed?
Diagnosed in February 2014. Started Imatinib 400 in April.
2014: 3.18 0.91
2015: 0.22 0.16 0.04 0.55
2016: 0.71 0.66
(Started Imatinib 600 in April 2016)
2016: 0.42 0.13 0.45
2017: 0.17 0.06 0.10 0.06 0.34
Posted 10 April 2015 - 09:42 PM
My Onc told me she has someone who has been on for 13 years with no problems. The LLS gave a webinar and an expert said the main reason people have to switch is because they didn't take the Gleevec as directed, e.g. they didn't take it if they were taking a hike for instance...
Our resident expert CML Trey from Texas probably knows much more about CML than your Oncologist (like five times as much).
You might ask him or he might see this question and answer.
Posted 10 April 2015 - 09:43 PM
A few started in 1999 during clinical trials and remain on it.
Posted 11 April 2015 - 05:20 AM
Posted 11 April 2015 - 04:05 PM
I've been on Gleevec since April 2003. My PCR levels went up once in the first 2 years. I took a course of Interferon (Yuck! Awful Stuff) with the Gleevec and my levels went back down. Have alternated between zero, weak positive, and sometimes a PCR @ .001 or .003 ever since.
Diagnosed 2003 and have taken Gleevec 400 mg until recently. I am now taking 200 mg and will go have PCR testing every three months to see if all stays relatively stable. Have bounced between PCRU, PCR "weak positive", and .005 ever since. Had a brief rise in PCR in 2005 for which I added Interferon (Yuck!) for 6 months which sent me back to previous levels and left me with neuropathy.
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