Today I found out that I am now undetectable!. I was diagnosed in April,2013 and put on Gleevec 400 mg. The side effects were horrible-nails fell off, hair fell out, rash all over--big blobs.
When I moved to the Chicago area in November, 2013, I saw a new oncologist. Because of the many things I had learned on this board, I asked her if I could have a 6 week 'vacation' from Gleevec, and if I could start Sprycel at a lower dose. She agreed.
When I started Sprycel on December 31, 2013, the onc wanted me to take 50mg for a couple weeks and then move up to 100 mg. Because I had learned from this board that many people did not start at the suggested dose, I held out for continuing at 50mg for several months. I did go up to 70mg for a few weeks, but when I suddenly had a really weird rash on the side of my face, I asked the onc if I could take a 6 day break from Sprycel and then resume at 50mg. She was reluctant, but agreed, suggesting that I should go back up to 70 mg in a couple weeks. I held out for 50mg, which I continue to take.
If it hadn't been for the people on this board, I never would have thought to push for continuing at a lower dose, even though my bcr-abl number was continuing to go down. I still have side effects from Sprycel--periodic muscle cramps, sometimes pretty intense, growths on my eyelids and near my eyes, nail discoloration. I think if I had taken the recommended 100mg of Sprycel, the side effects would have been too much for me. I'm not sure that I could have continued indefinitely on the medication. I know that not everyone can take the lower dose, but I learned that there is more room for flexibility than the oncs are sometimes aware of.
So thank you to everyone for taking the time to respond to questions, offer encouragement and humor, empathize, and share your knowledge and experiences and your joys and frustrations.
Happy Thanksgiving!!
Sue
