Any experience with Dacogen?

[orioles70]

Dad (78) was diagnosed with ITP a year ago. He wound up on NPlate which made him feel lousy on days after injections, then it stopped working. 2 weeks ago, new diagnosis, MDS. Doctor immediately stopped the NPlate which isn't recommended for MDS. Dad has had a couple of platelet infusions as that count got very low. But red cell count seems only a little low.
Last week blood work showed 40% blasts - and AML was mentioned. This thing is snowballing downhill quickly.
He's been referred to a cancer center where the doc is recommending a 5 day course of Dacogen.

Anyone know how rough the side effects are? He's actually feeling much better since stopping the NPlate. I'm hoping the Dacogen works to get rid of the blasts without ruining his quality of life. Doctor really didn't tell him much in terms of prognosis - just let's try this and see where it goes.

[orioles70]

found this write up
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3917925/

good news - it seems to be relatively well tolerated
bad news - it makes the prognosis sound pretty grim

[JordanN]

Hi, Orioles70!

I'm sorry that I don't have any experience with Dacogen - my dad only did Vidaza, but I just wanted to wish you and your dad all the best with his new treatment. I'll be keeping my fingers crossed that it reduces his blasts and keeps him feeling well. Best of luck to you both!

[SASSI07855]

I started on Dacogen in January 2016. I was on Vidaza prior to January. Today (March 4th) I completed my second month of treatments. I am tolerating Dacogen well.

[orioles70]

Dad finished his first round of Dacogen yesterday. No real side effects except that he feels a little bit weaker.
What has your Dr recommended you do (or avoid) between treatments? any special diet or complementary drugs?
Dad is having blood drawn very often and sometimes needs platelet transfusions. Reds and whites hadn't really been an issue before, but I wonder what Dacogen will do to those levels.

[Juan]

Hello friends,

Any news from this Dacogen treatment?
You are right Orioles, all the articles I read make the prognosis sound pretty grim too... hope thats different in your experience.

[Tominftl]

Originally Posted by orioles70

Dad (78) was diagnosed with ITP a year ago. He wound up on NPlate which made him feel lousy on days after injections, then it stopped working. 2 weeks ago, new diagnosis, MDS. Doctor immediately stopped the NPlate which isn't recommended for MDS. Dad has had a couple of platelet infusions as that count got very low. But red cell count seems only a little low.
Last week blood work showed 40% blasts - and AML was mentioned. This thing is snowballing downhill quickly.
He's been referred to a cancer center where the doc is recommending a 5 day course of Dacogen.

Anyone know how rough the side effects are? He's actually feeling much better since stopping the NPlate. I'm hoping the Dacogen works to get rid of the blasts without ruining his quality of life. Doctor really didn't tell him much in terms of prognosis - just let's try this and see where it goes.

I've been on dacogen for over 3 years. No problems except tiredness. I usually go in for an infusion one week a month. It takes a little over an hour. I recently had a port installed and have nothing but pain radiating in my neck. The doctors don't want to do a transplant as long as the Dacogen is working.