Hi, Fatty Fish! I enjoyed your video - you are quite the natural, whatever the interruption you can get right back to your story! Bracken is a sweetheart!
I was diagnosed in 2008. I started on imatinib - very familiar with the cramps but mine were never as bad as yours. After 8 months my liver took extreme exception to the drug and I was switched to dasatinib. After a couple of years, I developed a pleural effusion. When that settled my dosage was cut in half to 50mg. I did great on that reaching MMR and eventually CMR then after another 6 years I developed another pleural effusion. I tried lowering my dose and finally had to have a PleurX catheter inserted so I could drain the fluid at home. 18 months later I gave it up and switched to 150mg nilotinib twice a day and then 150mg once a day. I have been in complete molecular response for 3 years and this week I stopped nilotinib to try TFR (treatment-free remission).
You never mentioned how well the nilotinib is working for you. I mention this because you are on a very high dose and I wonder if some of your side effects would lessen or disappear on a lower dose. The newest research has the starting dose for newly diagnosed patients at 600mg. Depending on where you are with your PCR you might be able to take an even lower dose. As my doctor keeps reminding me, these drugs all have the potential for serious vascular and cardiac side effects, and if I can take a lower dose and maintain effectiveness that's a good thing. It's omething to think about and discuss with your doc if it interests you.
Right now, I'm going to watch some of your other videos. Good luck!
Pat
