Not a whole lot of people who get it, so just posting it here for people who do. I had my PCRu for about two years and then had bleeding issues from Sprycel. After a month break, started Tasigna. My PCR is now 0.01. My oncology nurse who called was ooberly positive that I am still MMR. I know I shouldn't have, but I secretly hoped I was actually cured and could see treatment-free remission in a couple more years after maintaining my PCRu. This isn't a horrible PCR, but it means there's no way I'm cured like I secretly hoped. I've been batting nearly 100% with making sure I don't miss doses since I started this journey 4 1/2 years ago, save for maybe than 5 or 6 days in that whole time span. I'm irritated that I think medical professionals sometimes assume that if your PCR trends up, it must mean you miss doses.
Anyway, not overly concerned at this point about the actual PCR number and maybe nothing really changed and it's just the normal variance that comes with PCRs. Just really really really bummed to have lost something with this result and that this is evidence I'm not actually cured. My goal was to maintain PCRu for 5 years and then talk to my oncologist about trials off TKI or at least lower it in half because I am very concerned about taking such potent, toxic medications twice a day for the rest of my life.
Thanks for being a group of people who can relate, when not many people can, including medical professionals.
And now for a question: this was my first PCR result outside of MD Anderson. I recently decided to stay local for my oncology care rather than continue traveling every 6 months to Houston. I will probably schedule another appointment now that my PCR is no longer undetectable, but what is the significance, if any, that this result is not from MD Anderson. Does MD Anderson's scale trend higher or lower than the international scale?