I was first diagnosed with MDS in 2001. Mine is also secondard but secondary to exposure to TCDD (Agent Orange) in Vietnam. Friends joke that I am just too mean to die but God knows that I have been blessed in the progress of my illness.
You and your partner stay as active as you possibly can. I love to hunt and be outdoors but cannot walk very far without getting short of breath. So the solution was to buy an ATV. So, I am still "Have Gun, Will Travel."
Only One knows how your partner will fare. That One though inplanted knowledge into our doctors that they might help us. Get in touch with a good doctor as soon as you can. MDS is what we call and orphan disease because it is so rare. Joe the Oncologist might not know much about it.
Tell us what city you are in and I am certain someone in this forum will be able to supply you with names of MDS experts near you.
I determined that I would not just lay down and die. Have your partner live life and never ever give up.
If you are near Boston Dr David Steensma (
David_Steensma@DFCI.HARVARD.EDU) at Harvard Medical is one of the finest MDS experts in the world.