[Tominftl]

Originally Posted by kgtuck

This is a very good question--my experience tells me that they really don't know what would happen if you discontinue. I have continued on Dacogen for 5 1/2 years now (my counts at diagnosis were hgb 7.4, platelets 15 and a high white count) and now they are hgb 14, platelets 250, wbc 2.8!! My doctor has advised that "you continue this course until the drug no longer is effective", and I don't think they know how long???? One reason for that is that after being on this site for awhile, I've learned that everyone is different even with the same diagnosis there may be a different response. I'm just enjoying being in remission!

Thanks for responding, that's what my Dr. told me today. I guess I thought remission meant something else. I am happy that I'm in remission. Just didn't want to be so tethered to this treatment.
Are you doing the dacogen iv drip once a month? I wonder if I could push it back to maybe once every six weeks? I will ask this when I go in for my next visit.
Thanks for responding !