I'm not sure

[Jan G]

I'm not sure if this is where I belong. I was diagnosed with P-Vera 15 years ago when I was 37. Have been on Hydrea since, with several years of inter-feron. I Developed blood clots, after several years and several bone marrow biopsies was told I had myelofibrosis and another biopsy several years later showed MDS. After clots formed while on coumadin I was diag. w/ Antiphosphalipid Antibody Synd. I developed Heparin Ind. Thrombocytopenia and started daily injections of Refludan. Changed to Arixtra injections a year ago. I also have ITP and hypothyroidism. Since my counts don't look like MDS they can be very high and then very low, I am not sure if there is anyone out there that deals with this combination of diagnosis who could share some of their stories.

[run4peach1]

My 78 year old father has some of the same traits. He had had a high platelet count for 6 or more years, diagnosed with MPD. Recently, is doctor has said he shows trailts of MDS as well. After a round of vidaza and two rounds of dacogen chemo, his counts all dropped way down. Ten days ago he had 2000 platelets. Today he had back over 2 million. It's very unusual to have traits of both, but it is possible. I can't understand how his marrow can make too few reds and way too many platelets.

Praying for those in need.

[Jan G]

I use to think I understood this a lot more, but like your dad it doesn't make sense so much of the time. My platelets are usually always low, sometimes in the teens, if they go below 50, I go on predi. yuck! We have tried several other things but they only last a few months. Because I have APAS as well as ITP we haven't looked much at removing spleen, I have had multiple clots. My WBC have been as high as 95,000 and are now hovering in the 50,000's due to the PVera. My RBC have been low. It is all a balancing act with meds. I am having a bone marrow biopsy next week after not having had one in several years. After reading what others have written I will ask about staging and level (?) of the MDS. Last bone marrow showed myelofibrosis and MDS but I don't remember any details or staging. We always are ruling out acute leukemia because of the WBC's. If anyone has any suggestions on anything else I should be asking please let me know. With all the different diagnosis, I use to tell my husband he had married a one in a million kind of gal, now I just feel like a freak.

[Ruth Cuadra]

Jan,

MDS is not described in terms of staging and level the way cancer is. (The debate about whether MDS is cancer or not is for another day--or at least for another thread!) There are two main classification systems used for defining the subtypes of MDS: the FAB (French-American-British) and WHO (World Health Organization) systems are well-described on Wikipedia. The key criteria that separate the various subtypes are whether you have any chromosome abnormalities and, if so, which ones, and whether you have any blasts and, if so, as what percentage of the marrow. This is information that will come from your bone marrow biopsy and will help you understand where you fit into the family of syndromes that make up MDS.

Hope this helps.

Ruth Cuadra

[Jan G]

Thank you, this helps as to what to ask. I remember something about the blasts from my last biopsy a few years ago but I am afraid I don't remember what was said. The only chromosome talk I remember was that I did not have the Philadelphia Chromosome. I use to really be on top of all of this, I think all the meds and information on so many different conditions have made my brain mush, or maybe its just trying to focus on "normal". Again, thank you for your help.