MDS Diagnosed feb 2009

[vikas]

My father age 64 has been diagnosed with MDS RAEB 1 his counts are now falling rapidly platelets is hovering around 10 and HB about 7.He is also having lot of blood transfusions.they say he cant be given BMT,so now Dr say he is to be given Dacogen ? never heard of mds Dacogen etc in life,does anyone has more info on Dacogen or have taken it Pls help.its extremely expensive in india.though his cytogentics and TLC counts are normal.

[Birgitta-A]

Hi vikas,
You know there are many posts about Dacogen from members. The drug Vidaza (probably just as expensive as Dacogen) has showed better treatment results (about 50% responders) than Dacogen and most doctors think that Vidaza should be given first. It is difficult to give any chemo when your father's platelets are so low - can't he receive platelet transfusions?
Kind regards
Birgitta-A
71 yo, dx MDS Interm-1 May 2006, transfusion dependent from dx, Desferal and Exjade for iron over load, Neupogen for low white blood cells, last platelet count 32

[Neil Cuadra]

A number of forum members have posted about taking Dacogen. There's a thread named Starting Dacogen and a more recent one named Dacogen for MDS. You'll find others if you use the forum search page and search for dacogen or decitabine.

Did they rule out a transplant due to your father's age?

To get the bigger picture I suggest that you contact the Aplastic Anemia & MDS International Foundation and get their free booklets named "Your Guide to Understanding MDS" and "A Guide to Understanding FDA Approved Drug Therapies for MDS". See their order form.

I also recommend reviewing the patient information from the MDS Foundation, especially Understanding Myelodysplastic Syndromes: A Patient Handbook (PDF, 220K).

[Mike Conlon]

I have been on Dacogen since May, 2007. I was in response Nov. 2007 and have been in total remission for over a year. I just finished my 22nd, 5 day cycle a couple weeks ago. Obviously I am quite happy with Dacogen. I just did my first labs since treatment and most items were in the normal range and a few were slightly below their bench marks. This is normal and when I do labs 25 days after the last day of treatment I should see all my numbers in the acceptable range.

[JackW]

I, too, have been on Dacogen going into my 30th cycle.
I would love to speak with you in person to compare notes.
I was diagnosed in 2005, and have been receiving treatments since 2006.
I did not achieve a complete remission and was seen at MD Anderson in TX.
Just recently, my counts have started to not rebound as well.
Anyways, let me know if we can talk more.
You are the only person I have found whom is so similar to my case except, I was diagnosed at 48, and am female.

[JyotikaK]

Hi Vikas,

Did you start Dacogen?

My Father (60yrs) was diagnosed with MDS (RAEB I) in July 2009 and has been on supportive care since, but now the transfusion requirement is increasing. The Doctors are suspecting that his disease might have progressed. He is also being suggested Dacogen.

Which doctor are you consulting?

Thank you for your response in advance.

Jyotika
_____________

Father (60 yrs) has MDS, on supportive care
HB: 9, TLC: 2.5, Platelets 18000

[vikas]

Originally Posted by JyotikaK

Hi Vikas,

Did you start Dacogen?

My Father (60yrs) was diagnosed with MDS (RAEB I) in July 2009 and has been on supportive care since, but now the transfusion requirement is increasing. The Doctors are suspecting that his disease might have progressed. He is also being suggested Dacogen.

Which doctor are you consulting?

Thank you for your response in advance.

Jyotika

we have not yet started dacogen,danazol 100mg is showing some improvement in HB PLC is not improving.Dr Harsh Dua at Apollo in delhi is good option........pls free to contact me at vikasbhandula@gmail.com

[vikas]

Originally Posted by JackW

I, too, have been on Dacogen going into my 30th cycle.
I would love to speak with you in person to compare notes.
I was diagnosed in 2005, and have been receiving treatments since 2006.
I did not achieve a complete remission and was seen at MD Anderson in TX.
Just recently, my counts have started to not rebound as well.
Anyways, let me know if we can talk more.
You are the only person I have found whom is so similar to my case except, I was diagnosed at 48, and am female.

hi thnx whats ur email id...