I've recently switched to Scemblix after three years of Sprycel. I've not been very tolerant of the meds. I started with Tasigna. For two months I was very weak, tired, heart pounding so hard I almost expected it to break out of my chest even for mild activity. Moved to 100 mg of Sprycel for two months and could barely function. I was so light headed I had to have someone drive me to my next appointment. My dose was reduced to 50 mg. I was dealing with a raging depression, brain like hot oil, angry and suicidal but thinking I had my actions under better control than my thoughts. I had physical side effects as well, balance and speech problems. During this time I had a couple short breaks from the Sprycel. Both times I was immediately relieved of the depression the first morning after a skipped dose. I woke up happy. The depression went on for a few months and finally I lost control, started throwing things in the house, in a rage, shattering them against the walls. What stopped me was the terrified look of my poor dog. I called my doc the next morning and went to 20 mg of Sprycel. This was MUCH better than 50 mg. I still had some physical symptoms. My mind was pretty much a snake pit at night so I tried to time the dose and get to sleep and hope I did not wake up. While the disease was not rebounding on 20mg, neither was my BCR/ABL continuing to go down. I bounced around the 0.02+ range for the next couple years.
In August I switched to Scemblix. I was nervous starting a new med at full dose given my history but nothing ventured nothing gained. I do have some physical side effects, mostly gut problems I'm learning to manage and live with. The primary difference is I'M HAPPY! I was unsure how much of my remaining milder depression was from the Sprycel once I was down to 20mg. Apparently pretty much all of it. I dropped the Sprycel and I am just freaking happy. To top it off my BCR/ABL went down to 0.004 after 3 months on Scemblix.
CML has become a trivial aspect of my life. Even without the drop in the BCR/ABL (I'm hoping for TFR) I can be happy living on Scemblix. I have to go to the Dr. 3 times a year and take a pill twice a day. I'm happy. I'm finally good to go.
Maria
