I have been lurking since my CML dx in January 2011 but have only posted replies a couple of times. I have benefited greatly from all the information and support here and have sent several acquaintances/friends/colleague to other LLS boards as a result of finding this one.
I was diagnosed in chronic phase and have been on 400 mg of Gleevec since dx. For the first few months, I had no/minimal side effects but since about August I have had a lot of musculoskeletal pain and fatigue as well as some bothersome autonomic-type symptoms (orthostatic intolerance, seemingly slow gastric emptying, weird sweating) that may or may not be Gleevec-related. Luckily, I never had any problems with myelosuppression on Gleevec. My molecular response measured by PCR has slowed: I had a 2.77 log reduction on my last PCR which was taken just after my one-year mark, following a 2.4 log reduction at both 6 mos and 9 mos. With all this in mind (plus the relatively recent focus on TKI cessation once at PCRU), my onc and I decided I should try a switch and I settled on Sprycel. My insurance company was completely cooperative, so this is all happening much more quickly than I had expected!
I have three kids and am trying to keep working, so I am worrying a lot about disruption resulting from the switch. I am also making myself a little crazy worrying about new side effects. I was hoping to get some feedback on the following questions. I have done a lot of searching in the archives so if you've posted on threads I could find by searching for Sprycel or myelosuppression, I've probably read about your story. That shouldn't stop you from reposting here but I don't want to annoy anyone by re-asking questions that in some cases have been asked before.
1. For those of you who switched meds, what wash-out period (if any) did you have in between? Did you wish it had been longer?
2. For those of you who switched to Sprycel, how long did initial (worse) side effects last? How much did they interfere with your normal activities? I have read many posts where people mention headache, nausea, but I guess I'm wondering whether these are the kind of headaches where you can't get out of bed or the kind where you think every so often boy this headache is a little annoying.
3. For those of you who switched to Sprycel because of Gleevec side effects, did anyone feel that Sprycel side effects (long-term, not initial ones from starting) were worse than those on Gleevec? Did you experience myelosuppression on Sprycel (especially interested in those who didn't have myelosuppression on Gleevec)?
4. For anyone who has had pleural effusion as a side effect, how was it detected?
Many thanks for your help!