Hi So I had to stop my Sprycel 70 mg after 7 years due to PE first time and allot of fluid on both lungs. Got one lung drained said couldn't do other one. So I've been off Sprycel now for 4 months and I have lower numbers then ever! Last two were .0686 and this one is .0181 I couldn't even get to MMR until June 2017 my numbers have always jumped around. Last Xray showed I still have a small amount of fluid on one lung.
For someone who never could reach MMR till recently now off drug and have had lower number then I ever have. Dr can't explain it just reminds me this is probably temporary I get PCR monthly. I have never felt this good since DX. I feel like myself again. I didn't realize how crappy I felt till this break! It's been a great break.
Has anyone else who had trouble getting and holding MMR ever been off the drug 4 months or longer with numbers staying lower then ever? If so how long did the vacation last?
Mystery but I'll take it ! I feel like myself after 7 years of crap.
The surprising thing for me is my numbers have never stabilized, always jumped around, sometimes jumped up even on pills. I never missed pills either. took me 7 years to get to MMR. I was just bearly MMR and only for 2 months before going off. Couldn't get to MMR. weird! But I'll take it!
Have a good day everyone!