Unclassified MPN, need help with this mystery diagnosis

[2hankers2]

I am new here. My husband has unclassified MPN, no mutations, no Philadelphia chrom. Doesn't fit in any category of ET, PV or MF, so it makes finding information close to impossible. Even the dr says little is known about this type. His WBC was 258,000 and hydroxyurea brought it down to 68000 and then after a month stopped working and now it is back up to 144,000. Has gotten 6 units of blood as his red blood count is so low. THe dr wants to switch to Jakifi but our insurance company denied it. Dr says this is common and he will find someone to fund it since it is so ridiculously expensive. Does anyone have this kind of MPN, know what treatment works, any prognosis? My husband is so fatigued, nauseous one hour and not the next, legs and arms burning (guess it is the bone marrow), horrible sweats, headaches, life is horrible and he is only 64. Help if anyone has any info that might help.

[Jawas]

Hi sorry to hear of your problems. You might like to find a mpn specialist haematologist. A good place to look would be the videos that andrew schorr posts. I am guessing you are in usa. As such Dr Ruben Mesa from the Mayo Clinic Arizona. Dr John Mascarhenas at Mount Sinai New York. Youtube channel search here

Patient power mpn

Good luck

Jawas

[Mazcd Partner MPNVoice]

Hello, I have some advice for you from Prof Harrison, she has said : It sounds like this is a difficult variety of MPN. Perhaps you could ask the doctor to explain more as the story is difficult. Most likely this is a form of what we call atypical chronic myeloid leukaemia or chronic neutrophilic leukaemia. Some helpful tests might include screening for mutations in SETBP1 & CSF3R. This may help to guide treatment but unfortunately these are difficult conditions to treat.

I hope this helps, Maz

[2hankers2 in reply to Mazcd]

Thank for the reply. The doctor has said this not leukemia at all. His BMB was sent to Cleveland Clinic and it is called Unclassified MPN because it does't have the mutations the other MPNs have.