Hello everyone took awhile to find you guys but here I am, And here is my story
Diagnosed with CML Oct 2016, blood test, biopsy 11/2016
Mid Nov started on Hydroxyurea 500MG 2X back to normal within a week, able to walk and breathe again, added Sprycel 100MG in mid Dec have been on it since, Hydroxyurea stopped mid Jan 2017.
Different side effects with each new LOT# of sprycel, small things, rash on fingers, bumps on scalp, hot/cold, eyesight, just flat fall asleep about after ½ hour of taking the PILL. I usually eat around 5PM than take the PILL by 11PM up and moving and ready to go in the AM.
Received Sprycel for July-Sept first dose was taken Mid July after 15 min noticed a bad taste in mouth, felt like I was on fire and the saliva would not stop had to sleep upright. In the AM still had bad taste, burning, saliva, hot/cold sweat, eyesight was really a mess. On day 9 I figured something was not right, all joints in hands and feet were swollen and now the right side of the tongue was so swollen it started to compromise my airway. Ended up in ER administered benadryl and prednisone took about 4 hours for swelling to subside.
Visited the Oncologist with no Sprycel for 10 days [that was nice] contacted Sprycel they were very helpful, received new Sprycel with a different LOT# started back with the usual small side effects so far.
03/2017 PCR 3.854
06/2017 PCR 1.467
Anyway thanks to everyone great resource and good info