Posted 28 March 2014 - 09:50 PM
Yes I do this on Tasigna. It's not a lot of fluid but enough to make for say half a dozen trips to the bathroom over a few hours. Mostly it happens at night when I'd prefer to be sleeping. Last time it happened when I was sick from an adverse reaction to an iron injection. I was running a fever, getting out of bed was difficult and required holding on to walls. I felt dehydrated but my stupid body was getting rid of all this fluid at totally the wrong time. I was pretty "pissed off" about the whole thing.
Other good times for this to happen are on a 15hr flight when you have a window seat.
I don't know where the fluid is stored - seems all over incl. the face. I don't have any fluid in my lower legs/ankles the way I did on gleevec and I don't have the gleevec eyes either.
Dx Dec 2010 @37
2x IVF egg collection
Glivec 600 & 800mg
PCRU March 2012
Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon
Nilotinib 600mg Oct 2012
PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips
April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy
Healthy baby girl Jan 2016, breastfed one month
Nilotinib 600mg Feb 2016
MMR May 2016
PCRU Feb 2017