[esther]

Hi Aaron,
how is your Dad feeling today? Did he ever get any problems with his spleen or liver? Did he do the bone marrow transplantation?
I`m asking because my husband has been diagnosed with the same thing - myelofibrosis - he is 39 y.o. and they checked all his internal organs by can scan and X-ray and it came out normal. Now it`s very confusing bec. it looks like enlarged spleen is a typical symptom for the disease. Before they thought he had aplastic anemia, now they say it`s myelofibrosis (2 different opinions by 2 different doctors) and we are going to get other 2 opinions by other 2 hematologists.
I would appreciate if you please could tell me how your Daddy is feeling today, what treatment he got, were they right with the diagnosis, did his spleen really grew later on, or what were his symptoms?

Thanks a lot.

Esther

Originally Posted by membengal

Hi.

Not sure where to begin. My father has spent the last six weeks trying to get a proper diagnosis for his condition. He's 63. He, yesterday, had a specialist at Hopkins murmur the term "myelofibrosis". I have been, over the last six weeks since this began, starting to get up to speed on MDS, Leukemia, and Aplastic Anemia (a working diagnosis for him a for few short days).

The diagnosis of myelofibrosis is something I am having trouble understanding as it relates to MDS. My dad's issues are severe bone pain (a bone marrow biopsy yielded no marrow in his hip on Monday), extremely low blood counts in all three lines (RBC, WBC, and platelets) and transfusions that are not helping with the counts. Even after transfusions, his RBC count won't rebound past the 8.5 range. They are now transfusing him every five to seven days.

Here's the difficulty: none of this sounds particularly good, but no docs that have worked on a diagnosis have been at all good at quantifying what is ahead of him. My brother and I are trying to figure out what to do and whether to talk him into moving near to one of us. I think we need to do just that, but am still missing some hard information that would assist.

The docs want him to start a regimen of the drug Vidaza, but there has been no real communication about what he might expect with that or what it is supposed to accomplish.

I guess I don't know what I am reaching out to you all to find out, maybe just some sense from people who have dealt with the MDS family of diseases whether anyone has dealt with cytopenia (is that the right word for lowered counts?) in all three lines and subsequent transfusions that don't seem to "take" for lack of a better word.

Is myelofibrosis a subset of MDS? Same thing as MDS? Related to MDS? I have been all over the internet and other than scholarly articles, have not had much luck in getting context for this situation.

Thanks.

---Aaron