Hi everyone. Need little advice. Dr called me yesterday said my hemoglobin is 10 and my bcr is still going down. I’m currently at .12. I’ve been on treatment for 1 yr and 8 months. I’ve been on sprycel 100 mg for 1 yr and 8 months and gleevec prior for 6 months. First time I came back with low hemoglobin? Does this mean anemia? We will be discussing it on my next appt. just wondering if anyone had any advice to the matter. thank you!
sherley
At 0.12 bcr-abl you are almost MMR which is a significant milestone. Given your myelosuppression, you should consider lowering your sprycel dose (i.e. to 40 mg). You are very sensitive to sprycel which indicates less dose is likely to achieve an excellent response vs other patients.
I was in your situation. High sprycel dose lowered my blood counts to unacceptable levels. I currently am prescribed 20 mg sprycel* and achieved "undetected" status while at that dose (over 3 years undetected). I had a faster response on the lower dose than the original dose prescribed! I still have mild anemia (RBC count), but improved my hemoglobin by supplementing with heme iron from time to time). Ask your doctor to try a lower dose for one month and monitor response. If you continue to trend downward, consider lowering dose further. Your goal is to find the lowest dose which works. In the case of sprycel, higher dose is not better.
My doctor did not lower my dose gradually. He went form 70 mg to 20 mg straight away and I never had to increase dose after that.
(* I currently take 20 mg every other day preparing to stop entirely to test treatment free remission)
Thank you for getting back. Congratulations on your milestones!!! I asked the director that few months back to lower the dose bc he f the research I’ve done. My bcr has literally been slow that last 6 months with barely no change. I have an appt Tuesday to discuss my options as my dr is retiring. So we will be discussing treatment. I’m interested to see how your remission goes with out treatment bc I was wanting to get you off the medication once I hit remission too. But I see you stayed three years later n the treatment. Hi hope the best for you. Thank you for all the advice ! I will try supplementing too. Have a great day!
Hi Sherley, I have been on meds for approx the same amount of time as you 2 years and 2 months and I too am hovering around 0.1 so not technically MMR but very close. Lots of pressure to reach MMR but to be honest even if you stayed where you are I am told it makes no difference to survival in the longer term. I am guessing you became resistant to Gleevec and hence the switch. Hope your hemoglobin gets sorted.
Alex
Hi Alex,
yes it’s a lot of pressure wondering why it is taking so long. I really wish to be off this medicine! We are almost the same. Interesting to meet other people with the same condition. I hope the best for you and all of us with this condition! Good luck on your journey. We should all stay in touch and see how our journey is going 😊
Haha yes I have been asking myself too why it takes so long. But we are all different and our bodies process at different rates. Our disease load is also different from person to person. But so far we are responding so that is the main thing and in CCYR who cares about MMR. I do but I am not stressing over it anymore it will happen when it happens or it won’t. Hopefully one day it happens we shall see.
Of course stay in touch either through the messaging or the thread I have here which is for the few sloths that we seem to be 🤣 https://cmlsupport.org.uk/thread/13632/still-no-mmr-24-months-nilotinib
Take care
Alex
