new member dad just started dacogen..what to expect?

[megw214]

Hello I am new here...my dad was just diagnosed with ACML with MDS MPN overlapse..he is a survivor of hodgkins and a stemcell transplant years ago...two months ago in was in the hospital with pneumonia and this is when they found out about this diagnosis. He has had multiple transfusions rbc and platelets and we'll as injections. He just started dacogen yesterday. Yesterday his hgb was 7.8 and platelets at 19..they still went ahead with starting the medication. How soon will it make his counts drop? What should I expect? I am so ovoverwhelmed and confused. Thank you

[Birgitta-A]

Hi megw214!
You know most members of this forum have MDS. This means that questions about AML and MPN - even if we know that the diseases often overlap - are difficult for us to answer.

You can get info about Dacogen for patients at the net like this info: http://www.dacogen.com/

You are already aware of that most patients respond with decreased counts when they start with Dacogen. It often takes four or more cycles with Dacogen before the counts start to increase. Hopefully your dad will have a posisive response soon!
Kind regards
Birgitta-A
75 yo, dx MDS Interm-1 2006, supportive therapy with txs, injections for WBC and drugs for iron overload until 2010. Thalidomide with positive response 2010-2013 and Revlimid with good result 2013-2014. Now waiting for home care due to decreasing HBG though I receive 2 units of blood/week and very low Neutrophils (a kind of WBC) though I take one injection for the WBC every day.

[MaryS]

Hi there my father is on dacogen for his MDS, MPN he also has non Hodgkin's Lymphoma.
He has responding pretty well. Right now he gets blood transfusions about 3-4 units once a month.
His blood counts start to go down on the 14 day but they sometimes are still dropping on the 21st day and he needs blood.his counts rarely go up on there own, which we thought they would. He has had hemolytic anemia( an auto immuno disorder causing his on RBC to burst.(they treated him with high dose prednisone.
This last chemo however his counts dropped on day 8( doctors drew blood to see if he has hemolytic anemia. He probably will need a few transfusions.
My father is 78. His Hgb hangs out around 9.5 and usually drops to 7.6. He always feels weak and very tired, and he is also anemic too RBC around 2.95 sometimes after blood they may go up to 3.35.
I hope this helps.
Mary Schmitz