MDS since 2003

[kertkkey2007]

Hi everyone, my name is Kert and I was diagnoised in Sept. 2004 with MDS.
My wife Dot and I have had a very interesting journey so far in trying to find out all there is to know about this bone marrow disease. I went on Dacogen last fall. I have had 3 session of treatments. I take it for 5 days with 3 weeks off in between each week of treatments. I just finished my first week of 3 weeks of treatments. I went 4 months this time before my counts started going down and thats the longest I've gone. My wife Dot will be making all the enteries since she is better on the computer then me but, I'll be reading what everyone has to write. This is going to be a very intersting site..... We live between Calhoun and Rome, Ga I'm 71 and my biggest problem is with my WBC and PLT.

[Anne]

Hi Kert and Mrs. Kert,

I have been diagnosed with MDS last October. I am 70. and going to city of Hope. They are presently treating me with Vidaza. 2 shots for 7days and off for 21 days. While I take the shots I get nausea. But I can control it with zofran. The shots' sites are painful. When I am off for three weeks, I still feel a little nausea. However, I have not had a transfusionson since May of this year. I guess in some ways this works. I wish I knew how long you can take this stuff. I will check on Dacogen. Good luck to all of us. If you hear of any new treatment--Please let's share the news.

[kertkkey2007]

Good to hear that you haven't had an blood transfusions since May. Write me anytime......