Anybody out there have a myeloid sarcoma diagnosis?

Posted by bqer @bqer, Apr 13, 2023

I would be interested in hearing from anyone with a diagnosis of myeloid sarcoma. When were you diagnosed, symptoms, treatments, outcome, did you have or planning to have HSCT. I was diagnosed last November and planning to receive my sister's stem cells May 2023.

Interested in more discussions like this? Go to the Sarcoma Support Group.

Lori, Volunteer Mentor | @loribmt | Apr 16, 2023

Hi @bqer Your conditioning is bit unusual for a blood cancer where you have developed a tumor in your soft tissue instead of the bone marrow. But the treatment for your conditions parallels treatment with Acute Myeloid Leukemia (AML). I had Acute Myeloid Leukemia for which I required an hematopoietic stem cell transplant.

I’m hoping in the meantime someone with Myeloid Sarcoma will pop into the forum to share the common experience of the disease. But since you’re heading to transplant, that is a territory where I’m familiar along with several other members who’ve had allogenic bone marrow transplants to keep us in remission.
Here’s a link regarding our transplant experiences. We’re all alive and well and living pretty normal lives…on the other side of transplant. I’m going to be celebrating my 4th re-birth day soon.
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
I’m sure you’re feeling some anxiety for the upcoming transplant. Have you undergone chemo treatment so far for the sarcoma? Do you have any questions or concerns I can help you with?