Question for the group

[Regge]

I was diagnosed in 2005 with PV jak 2 positive, since then neither my local hospital hematology or guy's hematology have been able to control my counts , going from high with platelets 4,000 ,WBC 33 ,neutrophils 29,then to lows of neutropenia, my medication was hydroxycarbamide and anagrelide , also had peg inf 180 micrograms, then they put me on busulfan which seemed to work , I then became neutropenic so was taken of all medication, bloods took a long time to return to normal range with platelets not going over 160 , I haven't been on any medication for 7months ,My question is, my diagnosis polycythaemia ruba Vera (features of MDS/MPN overlap cycling blood counts,

Has anyone else had this diagnosis any information would be appreciated, many thanks.

[hunter5582]

There are others on the forum with MPN/MDS overlap. Perhaps they can weigh in with their experience. and knowledge.

I know very little about MPN/MDS overlap. If I was in your situation, I think I would reach out to the academic centers/hospitals that are doing the research into this very rare situation. The care team at Guys are top-notch. They should be able to help you find someone to consult with. A quick search finds that there has been a MDS/MPN International Working Group in place for about 10 year. Perhaps that would be a place to start. You could also look into who the researchers publishing on MPN/MDS overlap and try to reach out to those specialists.

mds-foundation.org/mds-mpn-...

link.springer.com/article/1...

emedicine.medscape.com/arti....

I would think the care team at Guys will likely recommend further assessment of your current status. They should be able to help you find a source for a second opinion.

Please let us know what you learn. Everyone can benefit from your experience and knowledge.

[Regge in reply to hunter5582]

Thank you much appreciated

[saltmarsh]

Well you've been dealing with a challenge. I can't offer much except to suggest maybe another bmb would be in order. Hunter's advice is on target. Best wishes for getting some clarification on this.