[Anne Yeomans]

Originally Posted by Darice

Hi Anne
Both welcome and sorry you have to be here. The fact that your MDS is a result of the chemo and radiation from your breast cancer makes it secondary or treatment-related MDS which is tougher to treat than the primary or "de novo" MDS which apparently just appears out of the blue. As you can see, this thread is about the chromosome damage that goes along with the MDS and it is stuff that you will be learning more and more about. Have you had a bone marrow biopsy? If so, ask for the results and this will get you started in understanding what's going on. I was just thinking that I was going to copy this entire thread and keep it as a pretty valuable explanation of the chromosome stuff . . . which was all new to me.

My husband is also secondary or treatment-related MDS and has a pretty poor prognosis . . . BUT NONE OF US HAVE EXPIRATION DATES STAMPED ON US ANYWHERE! Do not buy into the gloomy prognosis and, if necessary, find another onc/heme who has a more positive attitude. You need to stay positive in this battle. Jens' prognosis, according to some of the more gloomy statistics I have read, was something like 4-5 months from diagnosis . . . he's about 9 months out right now. And doing well, all things considered.

Get copies of your blood counts . . . the CBCs . . . and start reading. My husband had his stem cell transplant (auto) at 67, and did well . . . it was tough, but we made it. He's 70 now and a good fighter. You've got a lot of fight left in you . . . find a good doc . . . and there are those who will accept medicare/medicaid. Come here with questions . . . there is a wealth of information here.

Hi Darice
Yes I've had a bone marrow biopsy about 2wks ago, that's how I got my diag. Still have not got results back as far as geneology. Have more blood work on the 4th start Vidaza Treatment on the 9th. Doc says high stage 1. So far have not been able to find and bmt that takes medicare/medicaid. He's looking in miamia which I believe is the clevland clinic and Tampa which I think is Moffitt not sure. He says baby steps right now. Not sure I can. i work so aggressivly on the breast cancer that the unknown is driving me crazy. Quess I'll have more info after next blood test need to get results so I can try to understand the meaning still very confused. But thanks for info. and may god bless you and your family.