Comments on: Dacogen Is Safe And Effective In Older Myelodysplastic Syndromes Patients (ASH 2009)

By: Virendra Kumar

Virendra Kumar — Thu, 05 Jan 2012 05:03:32 +0000

I am 57 years old. I have been diagnosed MDS patient accelerating to AML. I have been given 2 rounds of 4 days DACOGEN 50 mg. My liver & kidney are functioning well. I am not having major side effects except anemia, thrombocytopenia, high RDW. I am being PRC transfusion every month and POCS transfusion at an interval of 2 to 5 days. Bone Marrow report is as follows:In view of BCR-ABL negativity – picture is that of atypical CML/ Chronic Myelomonocytic Leukemia in accelerated phase.BM Biopsy: Hypercellular marrow, showing infilteration by myeloid cells in varying stages of maturation, along with mature myeloid cells present. Focal areas showing infiltrarion by blasts. Impression: Accelerated – Bordering in to Acute Leukemic Phase in background of Chronic Myeloproliferation Disorder.Chromosomal analysis revealed a normal male karyotype, unremarkable for numerical and structural Chromosomal abnormality, detectable at the level of resolution (ISCN) 400. Blasts 18-20%, Myelocyte 25%, Metamyelocyte 20%,Megakaryocytes Diminished, Segmented cells 14%, Eisonophil & Precursors 5%, Basphilla 6%, Monocyte 9%. Do with this report can I be treated with DACOGEN and platelet cells can come to normal stage. I shall be obliged if I could be suggested on or before III rd round of DACOGEN expected since 15th January, 2012. Thank you.

By: salil chandra

salil chandra — Sun, 27 Nov 2011 14:20:29 +0000

what are the possibilities of recovery in 16% MDS if dacogen is given? does the disease re-occur after treatment? if so after how many years?

By: MDS Beacon Staff

MDS Beacon Staff — Thu, 20 Oct 2011 17:35:32 +0000

Hello Robyn,

Thank you for your question. We are sorry to hear of your husband’s diagnosis.

We forwarded your question to Dr. Bart Lee Scott at the Fred Hutchinson Cancer Research Center and Seattle Cancer Care Alliance.

In his opinion, the Waldenström macroglobulinemia and MDS are two different cancers, but the fact that your husband has these two cancers should not exclude him from receiving a stem cell transplant.

Please let us know if you have any further questions in regard to this matter.

All the best,

The MDS Beacon Team

By: Robyn Mack

Robyn Mack — Wed, 19 Oct 2011 17:47:20 +0000

My husband has a history (12 years) of Waldenstrom macroglobulinemia and recently presents with a new onset of pancytopenia. After a bone marrow biopsy, the pathology report diagnosed him with MDS Leukemia. His oncologist is treating him with Dacogen, and supporting treatments (transfusions, RBC and platelets). I’m told he would not be a candidate for bone marrow transplant because he has 2 cancers (waldenstrom and leukemia). In your opinion, could MDS be the transformation of WM and therefore not considered to be a different cancer and therefore unable to receive a bone marrow transplant.

Thank you.

By: MDS Beacon Staff

MDS Beacon Staff — Wed, 12 Oct 2011 22:34:05 +0000

Hello Martha,

We’re very sorry to hear about your husband’s situation. We hope that you and your doctors are able to find an effective approach to his health needs.

Regarding your question … there are indeed data suggesting that Dacogen can be a useful treatment for AML. The company that markets Dacogen, Eisai, issued the following press release about the latest clinical trial that examined the efficacy and safety of Dacogen when used as a treatment for AML.

http://us.eisai.com/view_press_release.asp?ID=210&press=324

Based on the results of this trial and other studies, Eisai has asked the FDA to officially approve Dacogen as a treatment for AML. Here is a press release on that topic:

http://us.eisai.com/view_press_release.asp?ID=210&press=328

Even without an official FDA approval, your husband’s doctors are still permitted to prescribe Dacogen as a treatment for AML if they believe there is sufficient evidence supporting use of the drug in that way.

All the best,

The MDS Beacon Staff

By: Martha

Martha — Wed, 12 Oct 2011 19:35:25 +0000

My husband was diagnosed with MDS two years ago (9/2009). He is 86 years old and had no prior significant medical history. He was treated with Vidaza, until March 2011. Vidaza was stopped when his oncologist determined it was no longer working. One dose of Revlimid was attempted and discontinued because of the severe side effects.
Two months ago we were told that the disease had progressed to acute myeloid leukemia. He has been receiving tranfusions, RBC and platelets approximately every two weeks. The oncologist recommended Dacogen and my husband received his first treatment 3 weeks ago. Last week he required 3 units RBC and one unit of platelets. He feels very weak, somewhat short of breath (he uses O2)and has developed lower ext edema.
Has Dacogen been effective in the treatment of AML?

By: hovsepian

hovsepian — Tue, 13 Sep 2011 10:18:14 +0000

Hello my father is 63 years old and is diagnosed AML since one months ego .his first chemothraphy wasnt succesful and his doctor priscribed dacogen ;but we live in iran and unfotunetly dident find this drug .please guide me in whitch way we can buy it ? help me please, help.

By: Reni

Reni — Wed, 06 Jul 2011 23:28:57 +0000

Thank you for responding.

By: Beacon Staff

Beacon Staff — Tue, 05 Jul 2011 22:23:08 +0000

Dear Reni,

Dr. David Steensma from the Dana-Farber Cancer Institute in Boston said the following:

“Dacogen is not the same as Revlimid, but there is pregnancy risk from many different types of compounds. Since Dacogen turns on and off genes that are important for fetal development that is why the product information says this.

Usually the blood count goes down with Dacogen but after a few treatments if it is working the blood counts go up so if your doctor has recommended it, it is reasonable to try, although I can’t make a specific recommendation/give direct medical advice without knowning the full details.”

By: Reni

Reni — Sun, 03 Jul 2011 17:43:21 +0000

I have had several treatments for my MDS, but every year my hemoglobin dropped 1 point, that now it is 6.9
we tried Procrit, no success, Thalomide, severe reactions, Revlimid,rash and fever, and now my doctor wants to try Dacogen.
Since there is also a warning for pregnancy, does Dacogen have the same ingrdients than Revlemid?
Lately I have had blood tranfusions, but now face the danger of iron overload.
Since the blood count goes down farther with Dacogen, it is advisable for me to try it?