Hello to all community members,
Firstly, thank you to all community members for keeping the discussions on-going and active. This is the best place over internet to learn from fellow CMLers .
My name is Sid, I am 19 and I was diagnosed with CML on 20th April 2015 with the following symptoms:
- I had painful Priapism (a rare symptom of CML which was treated by aspiration)
- Splenomegaly (29 cm)
- My WBC had elevated to 350000
Baseline Observation (BCR-ABL)
- BCR-ABL Transcript 107%
21st April 2015 - 16th May 2015
My Oncologist started Gleevac 400mg along with Hydra. In few days I stopped Hydra and my blood counts had come back to normal. However after 1 month of Gleevac my platelets reduced to 70000. My oncologist stopped the pill for next 15 days.
1st June 2015 - 24th June 2015
My platelets had returned back to normal but WBC had elevated to 45000. I started taking Gleevac 400mg again, but on 6th June my dosage was increased to 800mg a day. I continued taking 800mg everyday but again on 24th June my platelets had reduced to 78000 and Onco asked me to stop the pill.
My oncologist took my BCR-ABL ratio but it was not promising at all as BCR-ABL transcript is still 103% which he told is not a good sign but spleen size reduced to 17.5 cm. Finally he has switched me on Sprycel (Dasatinib) 100mg a day as he tells that Imatinib is no longer working. I will be starting with Sprycel on 29th June 2015 (Monday) as I am completing the paper work requirements for the same.
My oncologist wants to check if any mutations have occurred and my test is due and I will update about the same as soon as I get the reports.
I have following questions from the fellow community members and it will be really helpful for me to manage myself well with your inputs.
1. Should I be worried about such a quick Imatinib failure in my case? My oncologist told me that 80-85% people do well on Imatinib in CML. For me its been just 50-55 days. Please share similar experiences.
2. My ever reducing platelet counts while I was on Gleevac. I am now going to start with Sprycel and does anyone has thromobocytopenia as a side effect of taking Sprycel? How do you manage it? Is it okay to go off pill for as long as 15 days to manage thromobocytopenia?
3. My oncologist also told me that if Sprycel does not work then I should be prepared for BMT
I have 3 sisters and 2 of them are not my match. My 3rd sister will be going for HLA testing in a weeks time and I am really hoping that she is my match. I will update the results for the same. In case of Sprycel failure is BMT the only resort or are there any other options?
4. Finally, am I on a right course of treatment? I know is still too early to ask.
I have all my reports in case more input is required for the discussion. I apologize if I am asking a lot of questions here and thank you to community members for taking out time to share their experiences and guide me.