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Replies to "Hello I was diagnosed with MDS today after a week in hospital with a hemoglobin count..."
Blood Cancers & Disorders | Last Active: Nov 12 9:00pm | Replies (81)
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Hello I was diagnosed with MDS today after a week in hospital with a hemoglobin count of 3.1. my doctor is trying to get me on a new drug I can't think of the name. He says a bone marrow transplant is the only way to beat it. Is it??
Replies to "Hello I was diagnosed with MDS today after a week in hospital with a hemoglobin count..."
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Hi @nylechojnacki. Welcome to Connect! Goodness, a hemoglobin of 3.1. You were running on empty! I’m sure you had one or more blood transfusions to get you back up to a comfortable level and out of the danger zone. But you do have a seriously compromised immune system right now. So please make sure you wear a mask if you’re in a public area and avoid any illnesses if you can.
To temporarily get this under control your oncologist hematologist may be having you start on Azacitidine (Vidaza) or Decitabine (Dacogen) for now. But he is correct, a bone marrow transplant remains the only potential cure for this form of blood cancer. If it hasn’t already, it can progress into a more aggressive form of leukemia called Acute Myeloid Leukemia.
The reason you’ll need a bone marrow transplant is because your old marrow is no longer able to produce healthy blood cells and because it is your immune system, it is no longer functioning well. There may be some mutations involved that has set the ball rolling on this cancer. Your old system no longer recognizes these cells. So getting a new immune system gives you a second chance at life and helps you fight the return of this leukemia.
Do you recall on your blood test results seeing the term blasts? Also, do you have any indication of mutations that may be involved?
I know this all sounds very daunting and quite a shock. I had AML and spent my first 5 weeks in the hospital when admitted with a hemoglobin of 4.7. I had a bone marrow transplant 5+ years ago (at 65) which saved my life. I’m in a durable remission, cancer free and at 70, living a healthy, active life.
I know you’ll have lots of questions. I’m here for you as well as a growing number of members in the forum who have had MDS or AML or other blood cancers that have required a bone marrow transplant. We’re all at varying anniversaries post transplant from 11+ years to a few newbies who are just going through the adventure now. We will answer any and all questions you might have.
Are you near a large medical center which can do the transplant for you?