July 23rd was my anniversary for CLM...
it started the diagnosis at nearly 60% BCR and it seems that never falls below 8%..
my three last tests were
May 9.67%
June 8.45%
July 11.123%
i am currently taking 50 Mg Sprycel but my HGB is at 11.5%
my Platelets are at 44
and i feel very fatigued... i am trying to make a decision if maybe i should change doctor or just wait.
Please share your thoughts or experiences if you can, i feel like i make 2 step forward and theee back!
Thank you
g
I don't know your history regarding mutation testing and other TKIs but I would imagine that changing TKI would be in order more importantly than changing doctor. I think going above 10 is defined as a loss of PCyR and a TKI failure. Your numbers may plummet very quickly with another TKI. If your Onc thinks these are really good results then maybe changing doctor is a good idea. The good news is you responded and plateaued on this TKI. Give another one a try after testing is my opinion. Hope your counts go up and the next TKI gets you going un the right direction. Keep your head up and know you have a lot of options.
Thank you,
my Onc is not as worry as i am, but today i told her and she insists on keep doing CBC weekly and CBR abl monthly to monitor any changes, she mentioned a possible Bone Marrow transplant but that as a last resource, when she told me i cave in... its scary, I won’t lie, i will continue the course and pray for better results, i wonder if there another TKI drug other than Imatinib or Dasatinib that offer good results if those two don’t work.
thank you for your response, its always reassuring to talk to someone about it.
G
Correction 10% is early molecular response not PCyR. I switched from dasatinib because I could not reach 0.1 and then went up to 1.2. It is trending back down on Tasigna thank God (0.36 last result). You should see about mutation testing for sure before talk about a transplant. You may have a mutation that another tki can help with (Nilotinib, Bosutinib, Ponatinib). I know someone who had T315I mutation and has been on Ponatinib for over 7 years. From what I understand mutations can go back to not found in your system. Transplant is a scary conversation to be sure but even that has changed for the better in recent years. Very invasive though and still a risk so definite last resort. Take care and I hope you find the right treatment for you.
Thank you again,
i will make sure to talk to her about these other TKI drugs and see where it takes me.
thank you.
