Hi WR,
Yes, unfortunately I had to discontinue the clinical trial after 22 months. The constant infections and GI issues became unmanageable so the side effects outweighed the benefits. I was placed in the bone marrow data base for a match through the Mayo Clinic a while back to see what my options/matches would be going forward. “Be the Match” reached out to me.
It’s been quite a rollercoaster but we all agreed to just take a break and remain on my currents meds except for the trial medication for 3 full months before making any decisions going forward. I am very thankful I’ve had no more major GI issues since being off the meds. I also went 3 months before needing another transfusion.😊

Hi Rene, Be The Match was how my doctors found a stem cell match for me. Yesterday was the 1 year anniversary date of finding my match. I have 2 brothers and 2 sisters but none of them were as good of a match as the one found through this organization. I have not had any direct communication with anyone. All communication has been done through my doctors at Dana Farber. Since my transplant in Oct 2022, I have been able to email my donor through a third party. No details about the procedure can be shared for 1 year. You are not allowed to contact your donor directly for 1 year post your transplant. My donor was actually asked to come back to the clinic in March to donate more cells. I needed a “boost” because my system was not actively making enough red blood cells. I’m so grateful this boost has worked!!!
I’m so grateful for my Angel Donor!
More than happy to share any information.
Hugs Cathy

Hello Rene, My dr. found my match through be the match but had no contact with them. It took about 3 months and had 3 10/10 willing donors.

I called them a few years ago. At that point there wasn't a good match. I have a son that's a half match and a brother that's about the same. Since then MD Anderson's transplant team has located 3, 9:10 matches. Hopefully we'll never have to go through transplants as we know them today. Things are changing. Gamida Cell's product Omidubicel/Omiserge was FDA approved in April and Medicare approved recently. Crisper Therapeutics has two products up for FDA approval, one for Betathassemia in December and another for Sickle Cell in April. My Dr at MD A tells me they're relatively easy fixes genetically speaking. Our biggest problem is MDS as it's pretty complicated. I've been told MPN will likely get solved in the near future.

Cathy2,

Glad to hear you are doing well with the transplant. It seems so scary. I’m from Boston and had a consult with Dr DeAngelo at Dana Farber a while back. He mentioned so casually that I’d probably need a transplant within 10 years like it was not a big deal. I guess he was pretty confident of their capabilities.