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I've had CML for 20 years and want to encourage others
Blood Cancers & Disorders | Last Active: 1 day ago | Replies (102)Comment receiving replies
I was diagnosed this past June with CML. Currently on Sprycel which seems to be working. My bcr-abl has come down when I just got my first results since being diagnosed. However I experience a lot of body pain in my muscles and joints especially my knees and toes and elbows. I am on a lot of pain meds currently but wondering if anyone else has had this issue and if it will go away??? Still very new to all of this so looking for some people that have CML as well….
Replies to "I was diagnosed this past June with CML. Currently on Sprycel which seems to be working...."
Hi Eric - I've been dealing with CML since 2010. Started with Gleevec then in 2013 moved to Sprycel which did a great job until unfortunately for me caused a pleural effusion in 2019 and I had to move off of it to Tasigna now. Anyway - I recall having occasional muscle and joint pain with Sprycel (usually in evenings) however after some period of time maybe 9 - 14 months or so it totally diminished so there is hope in that for you!. Certainly everyone is going to react to these therapies differently, but on the positive side if you stay on your Sprycel dose it really hammered down the BCR-ABL1 counts, I even went to zero for about 2 years but then had to reset the clock when it came back slightly. GOOD LUCK!
I was diagnosed in December 2020 and began on Sprycel in January 2021. According to my doctor my bloodwork showed improvement at every test and I'm in the 'boring stage'. The last 9 or 10 months I've had an increasing amount of aches and pains. In particular my legs and back. I attributed it to my change from full time employment to retirement. This spring I've increased activity with gardening, activity with grandkids but the pain continues and sometimes increases along with getting out of breath with any increase in activity. I never even considered that it had anything to do with CML or taking Sprycel until reading others posts. I haven't told my doctor about the aches and pains because I thought it was an 'age thing' (I'm 61). Is it normal to develop these conditions after being on meds for a year and half? To be honest I had not taken this illness that serious because my sister had an aggressive form of cancer and I felt like I got off easy with a curable form of cancer.
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Hi @ericloomis, welcome to Mayo Connect! I’m happy you found us so that you can Connect with other members who have Chronic Myelogenous Leukemia (CML) such as @living @anglis @craighatescancer and @suzie71
Hopefully they’ll be able to share their experiences with you and offer some insights to this form of leukemia.
I’m sorry you’re experiencing so much body pain. It looks as though you are seeing some positive changes in your bloodwork. What does your Hematologist oncologist say about the pain? Will it diminish as the leukemia gets under control?