Are their support groups for Myelofibrosis?

Hi, @toste. I looked at your profile and see that you have found Myelofibrosis-related discussions and finding others in your same position. Kudos for you to take on learning about your husband’s diagnosis! I hope you are feeling more comfortable, finding out more that will help you both.

How is your husband doing? How are you doing?

Hi, @toste. I was diagnosed with prefibrotic myelofibrosis in June. JAK2, ASXL1, ZRSR2 & TET2 mutations. Started with a platelet count of 1.4 million. Now down to 490k after 2,000mg/day of Hydroxyurea then 1,000 weekdays & 500 weekends. Still trying to find a balance with the Hydroxy between platelet count & white blood cell count. Good luck!!
Cheers

@tbrittingham68 I also was diagnosed with secondary MF in June2025. Had ET for 33 years with no symptoms other than an enlarged spleen. Haven’t felt well or like myself since April. No medication until I get worse. I wish you well!

@toste I was diagnosed with secondary MF in June. Had ET for 33 years with no symptoms until it morphed into MF. Haven’t been myself since April.

I was diagnosed yesterday. My journey begins at PV with secondary MF. Looking for any and all info about what to really expect. I turn 50 in 4 days.

I received the bone marrow results back the day following Christmas, but the Doctor verfied what Google was telling me.

Hi @mirakrye Well, that’s a heckuva way to ring in the new year with a change in your health status. I went through similar 7 years ago. Different disease but still that feeling of the rug pulled right out from under you.

PV or polycythemia Vera is one condition from a group of blood disorders called myeloproliferative neoplasms. A mouthful which is reduced to MPNs in medical terms. These conditions can include Polycythemia Vera (PV), Essential thrombocythemia (ET), Myelofibrosis (MF) and several others.

MPNs are generally characterized by excess production of blood cells in the body. In the case of PV, too many red blood cells are being produced.
From my understanding, Secondary myelofibrosis is a condition where the bone marrow's ability to produce blood cells is restricted, leading to fibrosis as a result of previous damage to the bone marrow. Which may be related to the PV.
Your hematologist will have a consultation with you to go over potential treatments.
Since you’ve already consulted Dr Google, you’re no stranger to seeking information. Here is a good article on secondary myelofibrosis for you to look into.
It’s by Healthtree.org: https://healthtree.org/myelofibrosis/community/articles/secondary-myelofibrosis

There are many members in Connect who have MF. Here are the results of that search.
https://connect.mayoclinic.org/group/blood-cancers-disorders/
And also, members with PV have many discussions that may be helpful for you: https://connect.mayoclinic.org/search/

Do you recall on your lab and BMB results the type of mutation which is connected with your Polycythemia Vera?

@mirakrye

Sorry to hear your diagnosis- I was also diagnosed with Myelofibrosis in 2025 but primary. I’m 66. Your age is definitely a good sign for better outcomes. Do you have a mutation?