← Return to Preparing for Bone Marrow Transplant: My mind is racing

Discussion

Preparing for Bone Marrow Transplant: My mind is racing

Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Sep 8 11:10am | Replies (45)
Comment receiving replies
@louisern

Interesting story! We had a consult at COH and they denied transplant out of hand. Said Dave was too low risk. Different mutations than what you had and he did not have a malignancy so that my have been the difference. At our initial consult the Mayo doctor said he was not eligible for transplant but could be in the future if mitigating therapies failed and his condition worsened. Well, that happened. He had a "single lineage dysplasia" which affected only his ability to make red blood cells. But you can't live without those so the outcome is eventually deadly. Tried several therapies and only one made any difference but it involved a chemo drug that wiped out his immune system so completely that it was life threatening. He had so many blood transfusions it became difficult to find comparable blood with all the antibodies he developed. Finally when there were no more drugs to try they decided he was eligible for transplant.
Thanks for your story and it's so good to hear you are doing great! Live long and prosper!

Jump to this post

Replies to "Interesting story! We had a consult at COH and they denied transplant out of hand. Said..."
katgob | @katgob | Aug 14 11:04pm

louisern
I think it sometimes about the doctor you see and what you have walked through before. Just possibly for me it was because my blood numbers had a record of continuing to decrease to low levels. Red cells and platelets. I like talking to the RN's and seems for your husband the risks at that time with a transplant outweighed the help. I alos got lucky to accept participating in a research study that i looked at online. Its history. Others had started it and I was a group to add to the statistics. A couple dozen of us were in it. A pill that was given when GVHD symptoms happened, in this study we got it day 5 after transplant to day 100. There is a tacrolimus pill I got to and that one ended or tapered starting day 100 too. Both are antirejection. Fingers crossed i have not had any GVHD.
The transplant nurse called to follow up on me and said some people never get gvhd symptoms. Those can be good, as it gives our new immune system a chance to fight off the germs.
Was Dave treated with the blood transfusions in Hawaii?

VIEW AND REPLY