How quickly time moves ...
we never did make it to the NIH for a second opinion, Sloan came up with a blast count of 15% when they reviewed the slides of the original BMB, the local hospital had 10%. Although the NIH was in the process of scheduling an appointment we felt that time was not on our side and also wanted to start treatment in a facility that was closer to home.
My husband decided to go ahead with the trial of decitabine and tretinoin and started the 5 day IV decitabine on 5/24.
http://clinicaltrials.gov/ct2/show/NCT00382200
We just had our follow up appointment with Dr. Klimek today to see if he was ready to start cycle two next week and all looks good.
The first month did present some challenges. A week after finishing the decitabine and day two of the oral tretinoin he started to run a fever, we were already scheduled to have a red blood cell transfusion in NYC the following day, but went to the ER where they admitted him and kept him there for a week. He had 3 units of blood and a unit of platelets. His ANC hit a bottom at 90 and they were able to manage the side effects of the tretinoin, mainly headache and subsequent nausea.
It appears that one of his brothers might be a good match for a BMT and the hope is to lower the blast count and then do a BMT.
His hemoglobin was 6.6 at diagnosis and today it was 10.5 so hopefully he is responding to the medication.
Best wishes to everyone who is coping with this disease.
Regards,
Debbie