MDS/MPN

[Michael]

My latest BMB with molecular panel indicates that I have acquired JAK 2 mutation. Previously molecular panel indicated IDH1, ASXL1 and SRSF2 mutations. Originally diagnosed with MDS in June 2016 at age 64. My sole cytopenia has been neutropenia. I have been on watch and wait since original diagnosis.

I have been having routine blood work bimonthly with local hematologist. Since beginning of 2023 my wbc (.95)and platelets (146) have been declining. I have fibrosis at level 2 in bone marrow. Hemoglobin is at 11.8 and fairly stable since original diagnosis. I now have mild splenomegaly. My Center of Excellence physician recommends that I remain on watch and wait but have blood draws every three weeks for increased monitoring.

I’d welcome comments, especially from those who have MDs/mpn overlap.

Thank you.

[Bonnie Shaffer]

Hi Michael,

I also have MDS/MPN.

I was diagnosed with MDS through a BMB in 2020. My mutations were SF3B1, DNMT3A, TET2 and CUX1. I was on watch and wait until this year.

In March my platelets ran up to 1.2 million. Another BMB found I have developed the JAK2 mutation. My Oncologists say this is very rare.

I began taking Hydroxyurea for the high platelets. It worked very well and very fast. Unfortunately it drove my HGB to 8.9 and my white blood cells are below normal for the first time.

I also have level 2 fibrosis in my bone marrow.

My doctors want to keep me off of treatment (except for Hydroxyurea, which I will take for life) as long as possible.

I’m getting frequent blood draws and my Oncologist says I will need to have a Bone Marrow Biopsy within the next five years due to my age. I’ll be 62 in August.

Not sure if any of this helps, but I thought I’d chime in as I know this is a pretty rare diagnosis.

[Michael]

Bonnie

I appreciate your response and wish you well. It appears our disease, while labeled the same, is acting much differently. No surprise there as I have consistently been told everyone is different.

The MDs/mpn overlap is definitely very rare. My Center of Excellence physician has recommended that I begin low dose Vidaza, 3 days per month once my platelets go below 100.
I am meeting with my local hematologist on 6/6 to discuss all of this. I am sure she will coordinate with the Center of Excellence physician who has far more experience with treating the disease.

Best wishes

[Bonnie Shaffer]

You are so lucky to have a Center of Excellence in your state.

I am on Medicaid so I have to stay within Oregon, which has no Center of Excellence. There is a very good hospital in Portland (OHSU) and I have an Oncologist there monitoring me closely.

Best wishes to you as well!

[Author]

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