Hi Biker- my husband also has the asxl1 mutation and I have read that it is associated 'with a poorer prognosis'. Each time we meet with his hematologist I keep meaning to ask exactly what that means, but of course forget. Does it mean that he is less likely to respond to treatment? quicker to transform to leukemia or AML? less success with transplant? We will be traveling back to his COE at the end of round 4 of Vidaza (currently on round 3) and will be sure to ask these questions. PS - I see you too are in NY, what center do you go to?

Asxl1
 

Sue & Dave,
We just received the 1st script of revlimid yesterday. My husband has an appointment this coming Monday, and was instructed to not take the medication until after we meet with his oncologist. I plan to ask about this mutation, as I have read it shortens the time to aml progression. The side effects are overwhelming to say the least😧. I'm not sure what my husband is going to say.
On one hand, he hates the limitations of his disease, but he hasn't been hospitalized recently, and has been without any formal treatment plan until the transfusion. He thinks he should just continue with that. I think this recent thought is due to the fact that we were just told that his Dr will be leaving the office, and he will be assigned to a new Dr. This causes him anxiety due to his inability to read, and express himself, and unfortunately, many Drs don't have the patience.
I'll post what I discover at the appointment on Monday.