Well, I used to be JRsBoo. But then the new website came along..........and due to my TKIs I can no longer remember which email address I used.
So I am reregistered with a new name: CarolineCookie.
I have been posting to Youtube a lot, and some of them are about the CML journey. If you are interested the link to my channel is: https://www.youtube....71hCoHQatSO3wMw.
There is also just a bunch of goofy stuff on the channel as well. But I know how excited I am every time I meet one of us, and I find it helpful to put a face with the posts.
And now a short update.
I was on 100 mg sprycel for 2.5 years. 6 months on Ponatinib 15mg. Then back to Sprycel at 50 mg then 20 mg.
Recently had to stop the sprycel due to shortness of breath. They found some pulmonary function had decreased, but not enough to stop the sprycel.
I was given the option to stop all drugs and take my chances. Or go back on sprycel 20 mg and see what happens.
I acknowledge that I was caught early (27K wbc), and my response deep and fast.
I probably could stop taking the tkis. probably. But there is no real assurance that it won't come back.
The research on stopping doesn't have "me" in the profile. And I don't fit the profile of those that were able to stop, they are all on different drug for different length of time.
I am risk averse.
I waffled. I debated. I cried. I didn't want to make this decision, what if I chose wrong????
I decided to go back on the sprycel, despite the severity of the side effects (yes, even at 20).
Back to my couch, with pain and fatigue. I could feel the fuzziness descend 20 minutes after taking the drug.
I keep my fingers crossed that someone, somewhere is coming up with a definitive answer. Until then, I am drugged.