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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

Hello jnwink. I'm glad you found our site but sorry that MDS is a reality for you.

The results of your previous or upcoming bone marrow biopsy should let you and your doctor identify the characteristics of your MDS and classify it according to the International Prognostic Scoring System (IPSS) or one of the older classification systems (FAB or WHO). These classifications are based on which blood lines are deficient (red cells, white cells, platelets), the microscopic appearance of your cells ("morphology"), the percentage of immature cells (called "blasts"), and the types of chromosomal abnormalities found.

That, along with other factors such as your age and overall health will let you assess the state of the disease and decide with your doctor on the best course of treatment. All that should happen before trying to interpret survival statistics. Keep in mind also that statistics are only averages, so they don't predict the future for individual patients, and that they are based on data collected over previous years, so they don't reflect the latest treatments and medical care. As you heard, new drugs are giving patients additional ways to fight back against MDS.

I suggest that you contact the Aplastic Anemia & MDS International Foundation (AA&MDSIF) and get their free MDS information packet.

Depending on where you live, I also suggest that you look for a treatment center that has experience with MDS, if you aren't already at one. MDS is a rare disease and is best treated by specialists.

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.