Anyone want to talk about Myelofibrosis?

Hi chrisatwell
I am 65 and was diagnosed with ET on January 10, 2025 which my O/H changed to maybe Myelofibrosis on February 10, 2025. That leads to me to question if O/H really know what I have. I do have high platelets that fluctuate 300 units but are still high, normal hemoglobin and red blood cells on four of five blood labs and two the most recent, as well as lowering white cells consistently but still high. I did finally have two decent appointments with my finally new primary doctor (after first one I chose canceled my appointments four times) and finally with a hand orthopedist today who did not know why I have enlarged non painful right ring finger proximal phanageal joint and clavicular-sternal joints. I appreciate that my primary doc, rheumatologist, and now orthopedist have said they do not know what I have which is unlike my O/H who first insisted I had ET and then changed that to Myelofibrosis. Since I really do not know what I have, before I take meds I would like to know. I am CALR mutation and not JAK2 or MPL mutations. I am only taking baby aspirin. I have no symptoms and no underlying health conditions so I am just still very frustrated with my O/H. I really do believe I need to have a second opinion outside of my current medical group to determine what I actually have and what needs to be treated. At least the orthopedic hand specialist agreed to do a procedure to determine what my enlarged swollen nonpainful finger joint has in the pannus fluid showing inflammation around the joint which has never been done and he can do an outpatient procedure. He did not know why the referrals earlier to check that was deemed unnecessary and not done by higher ups in the health plan earlier and is going to call the rheumatologist to discuss my case as she referred me for that twice.
I can understand why you are taking Hydrea since your spleen is enlarged and you have pain. Perhaps I could if had symptoms for which I am glad I do not.
This is a very helpful group and I am sure you will feel relief knowing others are in your shoes and want to help.
Definitely keep your positive attitude as will I. I hope you feel better very soon.

Thank you.
I will be 69 years old next month and was diagnosed with PMF in January. My spleen is already 19 cm as is my liver as well. I have varying but constant abdominal pain/discomfort. My doctor prescribed hydroxyurea last month and it seems to be starting to help as my pain level is coming down.
I have sporadic fatigue. Some days it's hard to get anything done. My only other bother is diarrhea.
I also have Type 2 Diabetes which pretty much dictates what and when I eat.
I'm trying to maintain a positive attitude but it's a challenge some days. @dunewalker 's message was a helpful reminder to keep up a proper perspective.

You’re welcome.
And, yes, He has.
🤗💕

Welcome to Mayo Connect, @chrisatwell. We all occasionally need a lifeline. And sometimes all it takes to bring comfort and encouragement is to know that others are going through the same thing we are. I’m so glad you’re here!
Would you like to share a little more about your story? Were you also diagnosed with myelofibrosis?

Thank you. I needed to hear this today. God bless.

My husband is finishing his first 7 day rd Vicaba. We are real apprehensive about what happens now. Any thoughts on this.

I was diagnosed with myelofibrosis a year ago, along with B-cell lymphoma. I’m taking Hydroxyurea with no side effects, feeling remarkably good, have labs done every two months. I’m 83, active and thankful for this platform with which to raise awareness and questions.
Try to continue your usual activities and enjoy life. This diagnosis does not define you; it’s just a bump in the road. Stay positive and thankful and you can handle whatever comes. Of all the kinds of cancers out there, myelofibrosis is not a bad one to have.

I was recently diagnosed. I am 55 and starting Jakafi. I'm feeling ok just blindsided by this diagnosis.

Like you, I was initially diagnosed with PV about 6 years ago. My Doctor, at the time, prescribed Hydroxyurea but I was not able to tolerate the drug. Another bone marrow aspiration was ordered and the diagnosis was changed from PV to Myelofibrosis. I changed doctors and for three years I took no drugs; the doctor just monitored my blood counts. However, platelets started to rise and two years ago I started Jakafi ... I just turned 74. The drug worked for me but my HBC is low, causing fatigue. My doctor wants me to consider changing from Jakafi to Ojjaara. Ojjaara has helped some patients improve hemoglobin levels.
We shall see, best of luck to you.

The local clinic (Sarah Cannon) is closing so I am changing doctors again. Will discuss the suggested change in drug treatment with new doc. I have good and bad days ... sunshine and mild weather helps.

no need, I repeated the info in my prior message.