I was diagnosed with cml about 20 months ago. I have been on 100mg Sprycel from day 1. because of the pain and trouble focusing, my dr has decided for me to take a two week break. I did start feeling better after 3 days off, but now (my 7th day) I feel awful again. No energy, body aches,upper left torso feeling odd, and all the other crap that we face. Has anyone else taken "breaks" and how did it go?
break from Sprycel??
Started by
tazdad08
, Apr 11 2013 03:30 PM
3 replies to this topic
#1
tazdad08
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Posted 11 April 2013 - 03:30 PM
Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!
#2
hannibellemo
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Posted 11 April 2013 - 09:48 PM
Any chances on reducing your dose for awhile to see if that helps.
Pat
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
#3
WoofWoof
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Posted 12 April 2013 - 06:21 AM
Due to my severe rash, last week I stopped my Sprycel completely and feel pretty good with the rash easing. The intent is to be off Sprycel for two week and then start on a much lower dose. I'm was on 100mg/day but will re-start @ 20mg. Only side effect so far has been night sweats. Best wishes for continuing the fight.
I have cancer but it doesn't have me
#4
tazdad08
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Posted 22 April 2013 - 08:35 PM
well, I start Tasigna tomorrow. It took a few days to feel better after stopping the Sprycel. Feels like I am starting this journey all over....
Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!
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