Hello! Found you! :o)

[Tina]

Hi!

I've been looking for a site like this. Glad I finally found you. I've a little problem and hope someone can shed some light. Does anyone here have a combination of one of the Myeloproliferative/Myelodysplastic disorders?

It appears that is what I have but the Doc's are still trying to determine what's what. I had a bmb 6/06 which showed myeloproliferative. I'm positive for JAK 2. Took Hydrea from 11/06 - 11/07. Had another bmb 12/07 which showed myelodysplastic w dysplasia.
I don't fit into the anemia categories as I'm not anemic although I have iron stores. I'm very confused about all of this. Please help if you can.

Thanks, Tina

[Birgitta-A]

Hi Tina,
As far as I understand there can be hybrid diseases when patients have some myeloproliferative and some myelodysplasic symptoms. I was dx with myelodysplastic syndrome (MDS) May 2006. One month later I was told that I had myelofibrosis. September 2007 I was dx with MDS again.
Kind regards
Birgitta-A
68 yo, dx MDS Interm-1 May 2006, JAK2 neg, transfusion dependent, Desferal 4 days with transfusion every 6th week, Neupogen 2 injections/week, asymptomatic

[Beth]

Hi Tina,

I am glad you found the forum. I am new too but there are some great people here who know a lot and can share that info as I see Birgitta-A already has. I have also found so much good information just reading through the old messages. Reading them several times has helped me so much to understand some of it finally. I was so confused.

Take care and look forward to getting to know you better,
Beth

[Ruth Cuadra]

Hi, Tina.

Welcome to Marrowforums. I don't know if we currently have any members with a combination of myeloproliferative and myelodysplastic disorders as you have, but I hope they will speak up if they are out there.

Yours is not an uncommon situation. The characteristics of both diagnoses can be present at the same time. The National Cancer Institute offers a good summary of MDS/MPD. They say:

• In myelodysplastic diseases, the stem cells do not mature into healthy red blood cells, white blood cells, or platelets. The immature blood cells, called blasts, do not work the way they should and die in the bone marrow or soon after they enter the blood. As a result, there are fewer healthy red blood cells, white blood cells, and platelets.
  
  
• In myeloproliferative diseases, a greater than normal number of stem cells develop into one or more types of blood cells and the total number of blood cells slowly increases.

Patients diagnosed with MDS typically have some chromosomal abnormalities in their bone marrow in addition to the dysplasia (poorly formed or misshappen cells). Do you know if your most recent BMB showed any abnormalities in the chromosomes? That information could help clarify why you're now diagnosed with MDS and would also dictate more about the available treatment options.

Regards,
Ruth