I saw my Onc today for first real visit since switching to Sprycel 6 weeks ago. We've mostly been communicating by phone and email with CBC's from local lab plus two unplanned Urgent care visits
First and foremost, my PCR is negative! This is awesome since I wasoff Gleevec two weeks before starting Sprycel and wasn't sure if that would mess with my PCRu status - thankfully it did not.
My counts were always pretty decent on Gleevec, but they are stronger on Sprycel, which was another nice surprise, I know a lot of people have their counts drop on Sprycel and since I am on 100mg I expected some drop but that didn't happen.
WBC - 6.5
From side effect stand point, things are considerably better on Sprycel.
For starters, my head is clear. I always felt I couldn't think straight while on Gleevec, when I took the 2 week break the fog lifted and I was glad to see that so far the Sprycel has not brought it back.
Muscle pain is considerably better. I still have some muscle pains, but more specific to certain areas which may be unrelated to TKI treatment, I am 40 and I do have other things that cause some problems. Specifically though, I no longer have the problem where my muscles constantly spasm. It was to the point where I could barely lift things without my muscles locking up and spasming. So far that is all gone. I have been able to do some exercise and I feel a bit stronger. Lower legs are feeling a lot better.
Much less fatigue!
Skin is better than it was on Gleevec, although not as good as when I was off Gleevec. When I stopped Gleevec, I immediately noticed a difference, within a week or so my color had returned and my skin looked healthy again. Now on Sprycel it is better than Gleevec, but I do have a slight rash on upper arms (does not itch), I have been having some trouble with acne, which I have not had in years, and my pores just look like they are wide open. This is all pretty minor and certainly nothing to complain about.
No more puffy eyes!
I am able to stand up when I get out of bed and do not feel like I have the legs of an old person.
In the "What's New" department, the one major issue I am having is some chest pressure and a cough. It is intermittent but can hurt a little and be annoying. I have had x-ray, CT, and ultrasound and all is clear. My lungs also sound very clear and I have no discomfort breathing or taking a deep breath. After 4 weeks on Sprycel it was getting pretty bad so they took me off for one week and then restarted. Since restarting it hasn't been as bad. Dr said we have to watch for PE, but so far everything is fine and it may resolve itself. She is sending me to pulmonologist to get a baseline work up. Said they could possibly give me an inhaler to help with the cough for times when it gets bad.
Overall the change to Sprycel, so far, has been pretty good. I realize there is a price to pay and the idea that I will be completely side effect free is not realistic, but as of now my quality of life is considerably better than it was on Gleevec, so we will see how it goes.
It was also beneficial to take the beak from Gleevec. It helped me to get a good handle on what was TKI related and what was typical stuff. For a long time I thought I was crazy because they would tell me a lot of the stuff I had was not related to Gleevec, then I stop Gleevec and those problems went away. So I have a better relationship with my side effects if that makes any sense.
Looking forward to a better year for myself and hope all of you have a better year as well. 2012 sucked and I am happy to see it go.
All the best......