Hi all. I just thought I’d share briefly my experience living with CML over the last couple years. From anemia, sever back pains, heart problems 3 different TKIs to finally some good news after a pretty negative year.
I was first diagnosed in Jan 2016 after having flu symptoms for a long time but being too stubborn to seek medical advice. It took me going almost completely blind before thinking “ok there’s something wrong”! Typical man I know. After an appointment with an eye specialist, it turned out I had burst over 20 blood vessels in the back of my eyes causing lots of blind spots. A blood test later revealed this being because my blood was very thick with white blood cells (255,000 instead of the regular 5,000)
A year in on nilotinib and some literally crippling bouts of back pain later, I had got my BCR-ABL levels very low and my side effects minimal. Still the usual tiredness, dry eyes and rashes but it was a fair trade for being well :)
Early this year however, I ran into heart problems where I was admitted into hospital with a heart rate of 178bpm and an irregular heart rhythm. My cardiologist thought it was due to the nilotinib use and he and my haematologist recommended coming off the drug. After a couple months of blood thinners and beta blockers, my heart rate was back to normal and in a regular rhythm again.
With nilotinib no longer being an option, I was prescribed imatinib 6 months ago. But every BCR-ABL has shown a rise in my leukaemia up to very nearly risk of relapse. Imatinib was discontinued and 6 weeks ago I was put on bosutinib which still showed an increase in BCR-ABL, but my specialist and I hoped it was just the off time between drugs I had.
After a rough year and bad BCR-ABL results for the last 6 months, I just wanted to share that my leukaemia has gone DOWN!
I just want to say a massive thank you to this website. And although I’ve only just recently opened an account, I’ve been reading posts on it literally since being diagnosed 2 and a half years ago. From the knowledge shared, to reading people’s stories, it has helped me a great deal to get through this.
I only talk about my illness with very close family and friends as I don’t feel comfortable talking about it. But I’m hoping this may help others see that setbacks with this illness can still be over come, and hopefully it gives people hope, like some other posts on here have given hope to me.
