Dying for a bone marrow transplant

[txplumber]

I was diagnosed in April of this year and have already tried Aranesp, Neupogen, Revlimid and now Decitabine. If I do not receive BMT soon I may die. How does one dies from MDS, I do not mean to sound gruesome, but I want to know what to expect. Any information would be helpful

[Ruth Cuadra]

Hi, Roger.

Welcome to Marrowforums. I hope that you can find some answers and a degree of comfort here among people who really understand what MDS is about and have many individual experiences to share.

It would help us to know the details of your diagnosis. What are your blood counts like? Do you have any chromosome abnormalities? Where are you being treated?

I am a little surprised that you have already tried Aranesp, Neupogen, Revlimid, and Decitabine since April. Aranesp and Neupogen alone can take a few months to get the dosage adjusted for optimum effect. Some people do react badly to Revlimid right away. Did that happen to you?

As for how one actually dies from MDS, there are others in the group who may be able to speak to this better than I can because they've actually lost a spouse or loved one. I think that death typically comes as a result of some complication rather than from MDS itself. For example, low hemoglobin over a long period of time can weaken the heart. MDS patients typically have low white counts that make them susceptible to infections like pneumonia and worse. When MDS progresses to leukemia, there are no doubt a different set of circumstances. Wanting to know how it will ends is a normal question, but as you will see at Marrowforums we are all focussed on how to live best with what is essentially a chronic disease.

Hope this helps.

Ruth Cuadra