Great news Susan. I too have attempted going off several times, but numbers creep up...Will discuss the possibility of riding it out for a bit longer time off, the next time I go off for a holiday and see if this is an option for me. I know it does not work for everyone, but am very grateful it works for many people I think more than half who try succeed. The good news is that it seems if your numbers do go up and you go back on your meds, things usually return to status quo without issue. I have been on sprycel now for 7 years. Hard to believe it's been that long!
Take good care! Love to all. 18's Beth -----Original Message----- From: Tony Lanoue <[email protected]> To: cmlhope <[email protected]> Sent: Sun, Sep 3, 2017 12:39 pm Subject: Re: [CMLHope] 3 months off Gleevec That's great Susan, maybe I gave up too soon! That's good to know when I try going off Sprycel if my numbers come up a little bit I will try to ride it out and see if they start coming back down, thanks so much for the info! Sent from my iPhone On Sep 3, 2017, at 11:38 AM, 'Susan Rosenthal' via CMLHope <[email protected]> wrote: Tony: This Oct. 2, 2017, I will have been off Gleevec for two years. So far, I've remained undetectable-had on blip February 2015, but Dr. Druker assured me that happens about 4 months out and that the next month would show undetectable again. Been undetectable since just like he said😀 Had my last PCR test in June at his office. I live in Miami and will be getting another PCR test this month! Keeping fingers crossed! Hugs, Susan Rosenthal On Sep 2, 2017, at 11:45 PM, Tony Lanoue <[email protected]> wrote: I just read last week on one of the Facebook groups that somebody has been off Gleevec for two years now and their counter remain stable. I am your other hand tried going off last year and my counts started coming back up. So this year I switched to Sprycel, going to stay on the Sprycel for one year then try to discontinue use. The studies show that people are having more success staying in remission after being on Sprycel. But like I said before some people are having success after being treated with Gleevec also! Sent from my iPhone On Sep 2, 2017, at 8:30 PM, Marty Gartenberg <[email protected]> wrote: Do you see just what the meaning of 18's is... Well all that counts is that your finally off of Gleevec. GOOD FOR YOU<image.png> 18's, Marty On Sat, Sep 2, 2017 at 3:58 PM, nycotb176 <[email protected]> wrote: Going on 16 yrs on 400 gm of Gleevec, when I was diagnosed with sclerosis of the Liver. My Oncologist at Moffitt Cancer Center lowered my dosage to 200. After a year, I was still in remission.No Philadelphia Bug found in the last 15 yrs. Six months ago I was told I may be a candidate for a clinical trial for individuals like me. I had to go thru a list of questions and when I was done I was told the trial had closed. I decided to take my self of the Gleevec and spoke to my oncologist and he told me that he felt I may be CURED (Which I don't like that word) Well its been 3 months so far and no changes. Looking forward to the future. I was also told I would have to be off Gleevec for two years before they would be able to tell me the good news. 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