Hi Bev, Having low hemoglobin numbers can really leave you feeling like a limp dishrag…pretty much rung out. I know how awful it feels and you’d surely like to return to a level of normal energy.

I can only speculate as to why both doctors feel this isn’t the time to proceed with stem cell transplant at this time. Transplants are often the last resort after lower level options of treatment have been exhausted. An allogenic transplant, with cells from a donor, comes with its own set of risks and potential chronic issues. It’s not done capriciously because it’s an arduous process. And I can understand your logic of having this done when you’re younger and healthier. If it helps any, I was 65 at the time and did fine…and that’s after several months of intensive chemo. I mentor patients at my local cancer clinic who have AML and require a SCT. Two people I’m working with currently is a man who is 75 and the female patient is 69. They both have gotten through the worst of it now and recovering. Still fatigued but the blood numbers are starting to climb and things look encouraging.

I don’t think we’ve discussed your diagnosis but I see that you’re meeting with a Myeloproliferative neoplasm specialist along with a transplant doctor. MPN is a rather general category for blood disorders where the marrow isn’t producing enough healthy cells: Either red, white or platelets. There are several types and different blood components affected. At this point it may be that your doctors are looking at this disease in its early stage and aren’t able to predict where it’s going yet. So it’s understandable that they might not be recommending the SCT until they know. If/when a specific mutation is identified, then that would be helpful for determining the course of treatment. Does that make sense? And of course, if this continues to proliferate it may influence their decision to go ahead sooner.

I trust my team at Mayo Rochester implicitly. They are the best in the world at what they do and you have the same team…not necessarily my doctor but they share the support BMT teams. So honestly, if you have two Mayo doctors telling you you’re not ready yet, I’d go with their direction. Though I admit I am a bit biased. ☺️

Are your WBC and platelets involved too or just your red cells? Have you been treated with any medications such as hydroxyurea?
Have you had any blood transfusions?

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