MDS survivors (Pittsburgh, Pennsylvania)

[Mike Conlon]

Dx May, 2007, total remission May, 2009. May, 2009 is third anniv. of approval of Dacogen in U.S. I continue to recieve treatment at Hillman Cancer Center in Pittsburgh. To my knowlegdge one local patient extended treatment to a twelve week cycle, this didn't work well and returned to eight week cycle which is where I am currently. I'm interested in talking to other survivors and comparing situations such as treatment cycles, prognosis from their doctors, side effects, etc.

[Vince R]

Hello Mike,

Not a survior yet but pray to be soon
I just joined the forum on 1/25/10
I was happy to see you thread on surviving MDS.
I have had MDS (rarrs) going on five years now.
My reds are messed up, in 2005 my Hemaglobin was in the middle 11's
now I'm fluactuating in the 8's.
The only treatments so far is Procrit and now Aranesp both help to produce
more red blood cells.
My doctor is in the upmc group Dr. Sun mentioned supressing my immune system, they think it may be spiked, seen by a flag marker in my DNA
I very interested in your treatment. please contact me.
My e-mail is vin50@hotmail.com

God Bless You

Vince