Dacogen or Exjade ?

[Margie]

Myelodysplasia -Refractory anemia for 5 years. I have had 26 units of red blood cells over the past year and now have iron overload. My doctor is giving me a choice between two treatments. One: Take Exjade for the iron overload. Two: Stop the transfusions and take Dacogen. I have done research and given this a lot of thought, but could really use some other opinions. Last week before my last transfusion, my hemoglobin was 7.6 (It drops about a point per week.) White count 1.1 and platelets at 32. My thought is that if Dacogen were going to be used, it should have been done earlier when counts were higher. I am concerned that now my counts will be destroyed completely and obviously I don't make them back.

[Birgitta-A]

Hi Margie,
As far as I understand many patients with MDS are treated with RBC transfusions, Exjade for ironoverload and Dacogen. It is important to treat iron overload - if your ferritin value is high I think you should have Exjade in any case.

The effect of Dacogen can´t be seen the first months and even if you respond :) you will probably need trandfusions several months. Then I think you will need something (Neupogen?) for your WBC:s. Dacogen can decrease the platelets too and yours are quite low already. We hope we will get drugs that stimulates platlets but the first drug (AMG 531) is still not approved by FDA.

http://www.medicalnewstoday.com/articles/42738.php

Kind regards
Birgitta-A
69 yo, MDS Interm-1 dx May 2006, transfusion dependent, Desferal 4 days with transfusion, Neupogen 2 injections/week

[Marlene]

why it's an "either/or" situation. If your iron is high, then you do need to reduce it. Many MDS patients have both their MDS and Iron overload treated at the same time.


Unless there's a contradiction/interaction of Exjade with Dacogen, then I'm not sure why you have to choose. And like Birgitta-A stated, if you need red cells, then you need red cells no matter what treatment you are taking.


Marlene

[Margie]

Thanks to Birgitta-A and Marlene for your replys. Thanks to Birgitta-A for the earlier post on which patients will respond to Revlimid. That is another drug my hemotologist has recommended. I have no problems with chromosome 5 as far as I know. It has been 5 years since my bone marrow biopsy, so things may have changed. My absolute NE count has gone to 417. At what point did those of you with low white counts begin to avoid crowds etc.?

[Birgitta-A]

Hi Margie,
Since I had neutropenic fever Sept 2007 with a neutrophil count of 0.1 I have been treated with Neupogen and have good WBC counts but I am afraid of new infections so I follow the advices in the sites for people with neutropenia. I have not had any infection since I left the hospital 7 months ago :).
In this site they recommend you to take special care if your absolute neutrophil count is less than 500 (page 5):
http://patienteducation.upmc.com/Pdf/Neutropenia.pdf
Kind regards
Birgitta-A
69 yo, MDS Interm-1 dx May 2006, transfusion dependent, Desferal 4 days with transfusion, Neupogen 2 injection/week