MDS to MPN overlap Need info.

[Irene Bradberry]

I was an MDS RAEB 1 patient for about 3 years. Then my last bone marrow biopsy revealed a change from 60% patchy reticulin fibrosis to 90% increase in reticulin fibrosis. I tested negative for JAK2 and V617F mutations. My hemo/onc said if I had been positive for JAK2 I could have started on Jakafi. Cytogenics have been normal on last 3 biopsies. My blasts have gone down a little each BMB. I’ve had 2 transfusions. On 2nd one my HGB dropped from about 8.5 to 6.1 in 4 days. They kept my in for 24 hr observation plus 2 units of red blood packed cells. It’s very hard to get info on MPN. I know there are 6 types of Chronic MPN. But, they are characterized by making too many red, white or plasma cells (platelets?).

So, since I don’t make enough of red and white blood cells and my platelets have been dropping wouldn’t that mean I’m probably Primary MPN?

Anyone out there with same diagnosis and can tell me where to get more info.
HELP…I SEE ONCOLIGIST THIS Friday. But, would love some background knowledge before then. I’m a Knowledge is empowering not a stick my head in the sand kind of person. BTW…I’m a 63 yr old female.

[mdsfound]

Dear Irene, I know this is a difficult situation for you and I would recommend that you go to one of our Centers of Excellence in MDS for a second opinion if you have not done so already. You should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. We also have information regarding MDS/MPN and on MDS with fibrosis. Please email me at patientliaison@mds-foundation.org with your postal address and I will mail it to you.

• This reply was modified 6 years, 7 months ago by mdsfound.

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