Dacogen 3 months
 

Hi all

My dad is now done with his 3rd cycle of dacogen after what we think is graft failure and his counts have not changed. (last week the reds shot up to double digits but then went back down this week)

They just did a Biopsy, I have heard it takes three months for it to start working should we be afraid that it has failed?

First, I am sorry that your father and family are going through this. I actually relapsed 6 months after transplant and went through 6 months of treatment with Vidsza and came back clean on my biopsy. My blood counts didn’t recover to even close to normal numbers for another 9 months.

I think that it is premature to panic, especially since Dacogen can take 6 to 7 cycles to reach peak effectiveness. Concern is unavoidable. The biopsy may add some clarity to the situation and hopefully produces the desired results I am now out 6 years MDS free. I hope the same for your father.

I’ll add him and your family to my good thoughts if that carries any weight for you.

Wishing only the best.

Dan

that does make me feel better (especially since he has been getting a reduced douce of only three days a week)
thanks danL

Ok so results are in and it seems the reason dads counts aren't going back up is because the resurgence in his old cells has caused new mutations.

They are however, adament they his disease isn't progressing into AML.

Their plan is to move the Dacogen up to 5 days a week and combine with Ventaclax which they feel could stamp out the mutations and cause his counts to increase.

That is probably the plan for the rest of the year and we will see what happens after that.