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.
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!
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
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?
@tbrittingham68 Welcome to Mayo Clinic Connect. While you won’t be able to meet in person, you’ve just joined a huge support group for myelofibrosis. It can be so helpful being able to speak with others who are walking along a similar path.
I’m putting in a link to introduce you to a couple of the members. You’ll meet people like @snakebite@davi0937@1pearl who are all at different stages with their MF.
~What are treatments for myelofibrosis? https://connect.mayoclinic.org/discussion/mylofibrosis-1/
There are so many discussions with our MF group that I’m not sure which would be most relevant for you, so here are the results of a quick search. Please feel free to scroll through results and to jump into any conversation to ask questions.
Search Results for Myelofibrosis: https://connect.mayoclinic.org/search/
Are you currently involved in treatment for you MF or is this a mindful watching period for you?
@loribmt
I have been diagnosed with MF in October 2025.
Having read the dreadful list of side effects of Jakafi treatment, I have decided to stay put (what you referred to as mindful watching period). I am currently waiting for a second opinion from UCSF.
What we have so far is JAK2 mutation + platelets hovering around the 1,000 mark, but no enlarged spleen. Currently only taking Aspirin and Lipitor (statin)
@loribmt
I have been diagnosed with MF in October 2025.
Having read the dreadful list of side effects of Jakafi treatment, I have decided to stay put (what you referred to as mindful watching period). I am currently waiting for a second opinion from UCSF.
What we have so far is JAK2 mutation + platelets hovering around the 1,000 mark, but no enlarged spleen. Currently only taking Aspirin and Lipitor (statin)
Hi @gajokos There are different levels of risk categories for patients with ET (essential thrombocythemia). It’s important to know where your risk level falls so that you get the appropriate treatment. For many people, aspirin works fine for helping to prevent clotting. Other patients with a higher risk for clotting or disease progression, it can be helpful to add another med such as Jakafi or hydroxyurea.
For your peace of mind, a confirmation of your diagnosis and the most effective treatment, it’s a sound idea that you’re getting a 2nd opinion. I’m all for those myself. Never hurts to get more than one professional evaluation!
Will you let me know what you find out please?
@loribmt
I have been diagnosed with MF in October 2025.
Having read the dreadful list of side effects of Jakafi treatment, I have decided to stay put (what you referred to as mindful watching period). I am currently waiting for a second opinion from UCSF.
What we have so far is JAK2 mutation + platelets hovering around the 1,000 mark, but no enlarged spleen. Currently only taking Aspirin and Lipitor (statin)
@gajokos I was diagnosed with Myelofibrosis (MF) in June of the year. My mutation is MPL not CALR or JAK. We are in a very rare blood cancer category which makes it very important to see a specialist in MF. You are in a good spot with regards to your spleen. It’s good to get ahead while you’re feeling good on any options. Best wishes on your care.
Connect
Connect
Like
Helpful
Hug
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?
-
Like -
Helpful -
Hug
1 Reaction@loribmt
I have been diagnosed with MF in October 2025.
Having read the dreadful list of side effects of Jakafi treatment, I have decided to stay put (what you referred to as mindful watching period). I am currently waiting for a second opinion from UCSF.
What we have so far is JAK2 mutation + platelets hovering around the 1,000 mark, but no enlarged spleen. Currently only taking Aspirin and Lipitor (statin)
Hi @gajokos There are different levels of risk categories for patients with ET (essential thrombocythemia). It’s important to know where your risk level falls so that you get the appropriate treatment. For many people, aspirin works fine for helping to prevent clotting. Other patients with a higher risk for clotting or disease progression, it can be helpful to add another med such as Jakafi or hydroxyurea.
For your peace of mind, a confirmation of your diagnosis and the most effective treatment, it’s a sound idea that you’re getting a 2nd opinion. I’m all for those myself. Never hurts to get more than one professional evaluation!
Will you let me know what you find out please?
-
Like -
Helpful -
Hug
1 Reaction@gajokos I was diagnosed with Myelofibrosis (MF) in June of the year. My mutation is MPL not CALR or JAK. We are in a very rare blood cancer category which makes it very important to see a specialist in MF. You are in a good spot with regards to your spleen. It’s good to get ahead while you’re feeling good on any options. Best wishes on your care.
-
Like -
Helpful -
Hug
3 Reactions