Quote:
Originally Posted by jnwink
I am very happy that I found this site. It seems that I have been searching for people who are in the same boat that I am in. I was dx in 2006 with mds. My counts have been going down very slowly. I had my 2nd bone marrow over the summer and the results where the same. I guess I was hoping that they made a mistake the first time. I had my blood checked in October and my white count was up from the summer. I decided to take the fall off and forget about mds. I have an apt. on Presidents day so back to reality. I have been reading reports on prognosis rates and I am confused. For the low level they are stating 3 years prognosis. Is that right? Do people live longer? I read some stories on line about people having it for 10-15 years. My Dr. said that everyone is different and with the new drugs things are changing. I would love more info.
jnwink
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I am somewhat confused. If you were dx with mds in 2006 have you been recieving treatments? If not, why not? In my case I was dx in May '07, started Dacogen immediately and was in total remission in Feb '09. When dx'd I was told 1.5 year prognosis, but learned later this was only if I didn't recieve treatment. I get most of my information from the oncology nurses. My oncologist is quite tight mouthed in regards to telling me much. I do know he was quite excited when he told me I was in remisiion. Keep asking questions and keep looking in different places for answers.