Secondary MDS

[loxie59]

I am looking for information on secondary MDS. My partner was diagnosed after 14 years of remission from non-hodgkins lymphoma and a stem cell transplant at Beth Israel in Boston.
She just had a donor transplant at City Of Hope. I dont see a lot of data out there, i understand that the transplant is the only chance for a cure. But is there more data about how patients do with secondary MDS? I am trying to be opitmistic.........but have not seen a lot that looks good.

Thanks for any feedback.

[Bob Macfarlane]

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.

[Neil Cuadra]

loxie59,

Recovery depends on so many factors that I don't think you'll find statistics about the prognosis for a patient in your partner's age range and health condition who has had an NHL transplant followed by an MDS transplant.

It's known that secondary MDS is more difficult to treat successfully, but a transplant "wipes the slate clean" in a sense. I don't mean that your partner is out of danger, just that the MDS may be gone. What matters now is post-transplant care and recovery. City of Hope is an excellent transplant hospital (my wife had her transplant there) so I know that you are in good hands.