New Member with MDS RCMD

[mitch]

Hello, everyone. My name is Mitch and I was diagnosed with MDS in November of 2013. I went to the hospital because I thought I was having a heart attack due to shortness of breath, light headedness, and chest pain, but the EKG turned out okay. However, the CBC they performed showed low blood counts across the board with a HGB of 7.1, WBC of 2.6, RBC of 1.8, and platelet count of 85. They then performed a bone marrow biopsy and confirmed a diagnosis of MDS. I was told I was Intermediate 1 on the IPSS scale with a score of 1.0. My blasts were under 5%.

I received three units of blood while I was in the hospital, getting my HGB up to 9.1, and I was then released to begin weekly treatments of Procrit and Granix to get my red and white cell counts up. After two months with no progress, and needing a two-unit transfusion every two weeks, they decided I needed to start Vidaza treatments since the Procrit wasn't working. And for the first two months of Vidaza I was not getting any better either - still needing two units of blood every two weeks to get my HGB up to 9, only to see it fall to 7 in the following two weeks. Rinse, repeat. But then, right around the third treatment of Vidaza my HGB had stayed above 9, even two weeks AFTER my previous transfusion. The following week it was over 10, and now, three months and three Vidaza cycles later, it is over 15 and holding. My WBC and RBC counts are normal too and the platelets are almost there.

I was on the 5-day Vidaza plan via IV drip. Daily IV treatments Monday through Friday for one week, then three weeks off. The original plan was to have six treatments, do another bone marrow biopsy, then decide what the next steps are. Well, I'm at that point right now. My last treatment was almost a month ago and I have the second biopsy scheduled for July 10th. My HGB is still at 15, but I wonder how long it will stay up while we decide the next phase of treatment. Can I go a few months without my numbers dropping back down again? And, just in case they say the next phase is to go back on Vidaza, how long can one take that stuff?

I've asked the doctors these questions but I don't get definitive answers. And I know you folks aren't doctors, but you've been there/done that, and I'd like to get some experience-based opinions. Thank you.

(I know these questions should probably go into a separate post but I'm a little new to this, so please bear with me.)

Mitch

[bailie]

Welcome Mitch. We have a few things in common. I was diagnosed in November of 2013. I went in to the ER for a kidney stone attack. They did a routine CBC and noticed my low blood counts. I had two bone marrow biopsies within a week that confirmed MDS. I started Vidaza within three weeks and will start my seventh cycle tomorrow. My counts bottomed out after the second cycle and have continually improved since. The goal is to be in optimum health for a stem cell transplant in the very near future. We will most likely decide on a date for the SCT this week. I just had my fifth BMB this last week. I have had no transfusions or anything except the Vidaza and Revlimid which started two cycles ago. The Vidaza generally works for a limited time and varies greatly from person to person. The important thing is to plan for what is next after Vidaza. For me, the only choice is a SCT.

This is a great forum for questions with some very knowledgeable people. So feel free to ask.