I have not been on in quite sometime. I was trying to find some advise on going off sprycel after 5 years of being undetected. I read the beautiful obituary on Sandy and was greatly saddened. Her knowledge and support helped me so much in the early stages of my CML. Many people on this site are very knowledgeable which is why I have come back for advise. I am only on 20 mg of Sprycel. Is it worth the try of going off. What are the risks? Has anybody found any other cardiac side effects of low dose Sprycel besides the fluid retention? Please any knowledge or opinion would help me on this big decision. Best regards to all. Dawn
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Hi Dawn. You might find this talk by Prof Clarke from the patient day in 2019 useful - the title is "Reducing or stopping treatment - who and when?" Available on this website at https://cmlsupport.org.uk/videos/reducing-or-stopping-treatment-who-and-...
Hope that's useful