So I haven't been around too much lately. I got a new job and I am quite busy. I feel blessed that I can take it on, I know a big part of that is the switch to Sprycel, I don't think I could have done it on Gleevec (maybe I could have but not too sure). I was terrified to switch jobs, insurance challenges and all. I have been very fortunate and so far things have worked out. Got my Rx filled with no issues and my Dr is on my new insurance.
Went to see Dr about a week or two ago. Hadn't seen him in 2 mo. Last time PCR was .0035 (approx 4+ log reduction) while taking 70mg of Sprycel. I was still having side effect issues with chest pain, but overall I was feeling ok. I asked him at that time if there was any reason medically why I should not switch jobs and he said "you are in stable MMR, there is no reason why I would tell you not to do it, just make sure your insurance is in order". During the last two months I figured out something quite remarkable with regard to my side effects. While my primary complaint on Sprycel has been chest pain, it has long been assumed this was GI related since they couldn't find anything wrong with my heart or lungs (thankfully). I discovered that Sprycel has lactose in it. I am allergic to milk. My allergy isn't severe so I would often cheat and have cheese or an ice cream cone but I tried to moderate it. I tried taking Lactaid with my Sprycel and my side effects subsided. I wasn't crazy about this approach in case the Lactaid interfered with Sprycel but Dr said it was ok. After about 2 weeks it stopped working so I decided to cut dairy out of my diet completely (not too hard because my son is also allergic and now he feels like we are in it together). For the most part all of my discomfort is gone. Anytime I get discomfort in my chest I can trace it back to something I eat. So through diet I have eliminated the issue. I still have a few other things, some muscle soreness and some minor skin rash but overall not too bad.
My latest PCR is now .0057. This is basically the same as last reading, slight uptick, but typical variability in the test. I asked Dr if we should increase dose and he said no. He said "you are stable and where you are supposed to be. For the first time in 3 years you feel well. Why should we take a chance just to get below detection?"
I told him I will see him in three months and we can continue the conversation then. If it still doesn't go to 0, then maybe I will push to go to 80 and see how I tolerate. For now I am just going to focus on my life, my new job, and my family and try not to stress about it.
I hope everyone is doing well I have not forgotten any of you, I will check in from time to time.