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Old Fri Mar 30, 2012, 04:54 PM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,557
You are asking all the right questions, camiboxer. Your father may not have MDS, he may have MDS that could be treated to give him a better quality of life, or he may have MDS but be in stable enough condition that treating him for the MDS would decrease his quality of life and be an unnecessary risk. That's a very tough call to make, and to make the best decision will require you, your father, an experienced hematologist, and having all the facts at hand.

I'm glad to hear you mention quality of life; too many people (especially medical practitioners) emphasize longevity and focus on diseases rather than considering what's best for the patient's life as a whole. I'm also glad to hear that your father is content by nature and not prone to complaining; that type of positive outlook makes a big difference. That doesn't mean that his health issues can be ignored, but having you "do the worrying for him" may be the best approach because you're probably better able to research these questions and collect information.

Do you have his blood count reports from the last few appointments? If not I suggest you get them so you can track his specific counts and the trends over time.

Has he had a bone marrow biopsy since 2006? Another BMB may not be necessary at present, but if he's had another biopsy since that original one you should find out what the results were and how it compared with the original BMB.

Is your father's doctor a hematologist? I think he should have one who has experience with MDS, rather than just a general practitioner, gerontologist, or other doctor who may be expert in their field but not with bone marrow failure diseases.

If you didn't already get it, request the free MDS information package from the AA&MDSIF.
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