My brother just passed away from MDS

[BILB]

Sister,

My brother’s blast varied throughout the course of the different clincal trials. They remain relatively low (> 10% until at the time of induction chemo when they were higher ). Days after the induction chemo treatment they actually dropped to 0%. Then, within a week or so they started to really elevate quickly. They were in the 40% to 50% range when the complications really started to take over. As far BMT, I was tested first. Didn’t match. Later on my sister was tested and didn’t match either. He never found a complete match ( I guess 9 to 9 match? ) in the national data base after continuing to search during the year. Something to do with the type of chromosome damage. The game plan was to reduce the blast down enough with the induction chemo to start the BMT. FYI, I did meet a person at Johns Hopkins whose wife had MDS. He seem very knowledgeable in BMT. He had done alot of research. He said the best hospital for cutting edge BMT was the University of Minnesota. Maybe worth checking out.

God Bless

[mtair37]

Just read your note and it reminds me of my husband, he has been so healthy all his life. Had been active in sports, and has officiated for over 30 years in College, both in basketball and football. He was just newly diagnosed with MDS/MPD about 6 months ago. Went 4 round of chemo which didn’t do anything so they stopped. Now they are thinking of a clinical trial or Vidaza. Trying to figure out which is the best. Any suggestions would be appreciated. We realize not everyone is the same. So sorry for your loss.

[jaxem]

bilb
I am so sorry for the loss of your brother. this is such an evil disease. My wife & I spent the summer at Univ. MN (and Fairview Hospital) last year because she was so sick and it did get down to going there as a last resort. They are perennially cutting edge & have done more transplants then anyone else. Although transplants can be done at various levels of disease, the lower they are & the younger the patient, the more chance of success you have. We went for a special trial only they were doing involving a half-match (haplo) using our son as the donor, however, she never got to a point of health where she could have survived the pre-transplant process which is devastating. If your health is good, you have a 1/3 chance of success of living 3 years. You can be in the greatest condition but if cancer strikes, especially blood cancers like leukemia & lymphoma, you’re in for the fight for your life. This is an MDS forum but people have to realize that some forms of MDS can be a precursor to leukemia and lymphoma. We have a long way to go and I pray that pharmacological approaches to fight these diseases quickly get better with time. If anyone would like some impartial information about the Univ. MN, feel free to e-mail me.

[Author]

Posts