[bill4872]

All I can say is that my Mom has suffered from MDS for three years now and she also has suffered from an enlarged spleen. She is in her final days now, unfortunately. I also think it (enlarged spleen) is a just a product of the MDS disease. She can only eat a little bit at a time because the spleen pushes on her stomach. I am sorry to say we have not found any treatment for this problem which she has had for 1-2 yedars. The doctors did mention a spleenectomy as a possibility but Mom was not interested in that.

[bill4872]

I can only tell you our experience with Vidaza. Everyone is different though.

My Mom (80 years, since 2003, REAB-2, maybe AML now) went on Vidaza for about one year, 5 days on, four weeks off. During this time her transfusion frequency went down (from 3 weeks to 5-6 weeks). She stopped Vidaza primarily because of QOL issue (severe hard stools and diarrhea; since then she has had good luck with Miralax for the first problem but decided not to go back to Vidaza). Since stoppng Vidaza, her WBC count has skyrocketed to 50,000 which is why we think it may now be leukemia.

So, from our perspective, getting off Vidaza seemd to have not been a good idea, except for improving the Quality Of Life issue. Which may or may not have been due to Vidaza.

I wish you good luck with your Vidaza treatments which sound like they have been successful so far.

[bill4872]

Fotis-

Its a very difficult disease to understand and come to terms with.

I suggest you ask the patient liaison at this MDS Foundation to send you their information packet. In it is a really excellent little book called “Understanding Myelodylastic Syndromes: A Patient Handbook”. It explains everything in clear simple language.

And, as already suggested, read everything you can get a hold of. This forum is great for asking questions and seeing what other peeople are doing.

Bill

[bill4872]

Scottie-

According to the booklet “Understanding MDS: A PAtient Handbook” (available free from the MDS Foundation- it is an outstandard must-have reference that I just found after 3 years!), blasts (stem cells) are immature blood cells. With MDS, these blasts do not mature correctly and/or die young. The result is an abnormally large percentage of blasts in the bone marrow and fewer than normal mature blood cells in the blood (which accounts for your father’s low 22-30% Hematocrit vs the normal range of 36-52%). According to the table in this book, less than 5% blasts is good, in and of itself. (Blast ranges are 0-5%, 5-10%, 11-20%, and 21-30%, so you are in the lowest range.) But I am not a doctor or anything, I am only reporting what this patient handbook says.

I hope this helps.

Bill

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