Bone Marrow Transplant Support Group

Hello, my name is Laurie a few years ago I was diagnosed with follicular lymphoma stage III about four years ago. Since my diagnoses I have had a 8 series of Retuxant. At the time, I had an over eager doctor who felt that the Retuxant didn't work and then did a form of chemo called CVPR before the Retuxant kicked in. Under his care and during my treatment, he unexpectedly left his practice and moved to the west coast so I needed to find another oncologist. I ended up under the care of a very well known doctor in the DC area.
I was in remission for a short time - maybe about a year. We have done the wait and watch and I am tired of it. It was recommended to do stem cell transplant..using my own. In the meanwhile I was diagnosed with Polycythemia Rubra Vera (PRV)....too many Platelets and White and Red cells. Being that my blood was now compromised I could not use my own stem cell for the transplant.. and after additional testing found out that neither of my siblings were matches to me, but were perfect matches to each other. I was placed in a donor search and eventually found a close match (apparently I am a rare gem) and out of all those millions of donors - there was only one found for me)... I guess my question is this .. I haven't been able to locate any information with these two disorders together.. is there any one out there who know's of a site or are in a similar situation?
and update: I am scheduled to restart chemo again in December for about 4 - 5 months then do the transplant when my counts are good.
Posted on 10/20/08, 05:10 pm