Hi All,
I was diagnosed in mid May this year. I was put on nilotinib, 300 mg twice a day. That brought my WBC from 160 to 13 in two (rough) weeks, and the numbers completely normalized shortly after that. But I was having side effects: gut problems; balance issues; some speech problems; heart pounding with any exertion; and eventually a TIA which led me to be taken off the nilotinib. During my short drug vacation the balance issues pretty much resolved, as did the speech, but they are both back on the dasatinib (100 mg once a day). Overall I'm doing better on the dasatinib, much easier on my gut, no heart pounding. But now I'm light headed and often have no energy, hard to move at all. Normally I'm a very high energy person. The most concerning however are balance and speech problems. And I've started dropping things with my left hand, no lack of strength but more that I have to pay attention while using it to make sure it has gripped properly.
Has anyone else had balance or other neurological problems on these drugs? Part of my speech problem right now seems to be my tongue, which is a bit thick on the dasatinib.
The oncologists I'm working with seem to feel these are not normal side effects for these drugs. I've a follow up appointment with a neurologist coming up. Brain MRI and CT scans are normal.
Oddly I've had a couple really good days on the dasatinib, where I felt like myself with none of the neurological symptoms. I've been keeping a log of activity and food to try to figure out why some days are miserable, some mediocre, and some good. Food seems to matter, sugar having a bad effect I think. I was having trouble with cranberry juice which I stopped drinking, unsure if it is the cranberry or just the sugar. I also have Celiac disease but am very good at keeping all gluten out of my diet.
I started the dasatinib just over 4 weeks ago.
Maria