Connect
← Return to I've had CML for 20 years and want to encourage others
Discussion
I've had CML for 20 years and want to encourage others
Blood Cancers & Disorders | Last Active: Oct 22 10:55am | Replies (100)Comment receiving replies
Hello all! I’m Laura & I’m a fairly active 63 year old. I was diagnosed in June 2022. Started with Imatinib, which failed, & I’ve been on Sprycel since Sept 2022. I started on 100mg, then went to 50mg within a week because of fluid retention. In the past few months, the fluid retention has started again, especially around my eyes & around my ankles. My doctor suggested stopping Sprycel for a week to see if that’s the culprit. The swelling is reduced, but I’m not sure if I should be happy about it, since I don’t know what the next step will be. My BCR-ABL has never gotten below .02 & has been a bit of a roller coaster.
Has anyone has a similar experience?
Thanks!
Replies to "Hello all! I’m Laura & I’m a fairly active 63 year old. I was diagnosed in..."
Hello
I have been on Sprycel since late 2018. Started at 100mg, I also had a roller coaster of BCR results which is fairly common from what I understand. Eventually reduced to 50mg, some side effects subsided and dealing with others. Edema and swelling would be one of them. I have had some significant swelling in my face and eye lids. I have been able to keep it under control after seeing other specialist. ENT, ophthalmology, and infectious disease. I have chosen to continue with the Sprycel simple because the benefits out way the alternative.
Hopefully you can find some way to manage side effects and keep working towards positive labs.
Connect
I would really appreciate you providing me some information. I was recently diagnosed a few months ago and was told there are no meds to stop the progression of MGUS. You are on some right? Is it for the reason of hoping to stop the progression. Thank you. I would greatly appreciate how you got on these meds and what their purpose is.
Thank you so much.