Myelofibrosis w/ JAK2 mutation

I too have Myelofibrosis I did a bone marrow biopsy prior to starting Jakafi. They did detect a genetic change that was causing they said this bone marrow issue. I wonder how things went since May 2023 over a year ago. So I have had this diagnosis for over a year.

hello Bijou
I did start Jakafi a year ago. I did not take the full dose. I have not noticed much change in my condition It has stabilized so I am told . I still have symptoms though and some side effects I am planning to talk with a Chinese medicine specialist. I was told by one I have worked with before that it is possible that Chinese herbs could help with side effects Fran

I was exposed to Agent Orange in 1968-69, at the height of the Vietnam War.

I plugged up the pipes around my heart. I had open-heart surgery (5-way bypass) in 2010. At that time, my diagnosis was Essential Thrombocytosis. I began taking Hydroxyurea.

A few years later, my cancer evolved into Polycythemia Vera. My oncologist kept me on Hydroxyurea.

A few months ago, my diagnosis became Myelofibrosis/bone marrow cancer; my bone marrow is making defective blood cells. My oncologist/hematologist prescribed Jakafi. At first, I was weak, but my overall health is improving. I have a Great care team. Coincidentally, I pray a lot more than before.

Hi @mikefromridgefield. First, I’d like to say thank you for your service to our country. Unfortunately, Agent Orange has taken its toll on so many members of our military. My brother included. So I’m sorry to see you’re another victim.

By the way, welcome to Mayo Clinic Connect. As you’ve already found, there are a number of members who also have been diagnosed with Myelofibrosis (MF). It can be so helpful to share experiences with others, helping to avoid that feeling of being alone. It’s wonderful that you have a great care team. The knowledge that you can trust your team to have your back often makes all the difference in the world for confidence and peace of mind in the treatment.

It sounds like you’re having a positive experience with Jakafi. That’s very encouraging for you. How often do you have labs?

I was diagnosed with CMML 9 years ago, and after a BMB they added myelofibrosis to the diagnosis. I started out on hydroxyurea but after a couple of years it didn’t work very well. My white count was 70,000 and my spleen was huge. My doctor switched me to 10 mg Jakafi and I was in a clinical study for a drug that was supposed to shrink my spleen. I quit the study early because of the side effects, but my spleen shrunk by 2/3 even in the short time I was on that drug. My white count has been pretty stable around 30,000 for years and my other counts are a little low but not concerning to my hematologist and I feel pretty good so I count myself lucky every day. I find bad arthritis to be a lot worse and more debilitating than the blood diseases. There are helpful drugs and things like itching and muscle spasms can be dealt with. Definitely not a death sentence by any means.

@khandro100 I was diagnosed in June 2025 with secondary MF after 33 years with ET. Took Hydroxy for a few years and Agrylin for a few years. Decided to stop—-had no side effects on either drug. My BMB in June of this year showed MF. Presently not on any drugs. It hasn’t progressed enough and counts aren’t terrible. I do have headaches, most days stomach aches, and unfortunately now a UTI that requires an antibiotic, which is very hard on the microbiome. I have tinnitus, which may not be related, constipation, fatigue, and feeling “unwell.” Don’t know how to describe it. Haven’t felt well since April. Kinda like the flu w/o fever or aches. Just icky!

@rivieramaya2009 I was at the Infusion Center for a phlebotomy (JAK2, PV)and the nurse asked me how I felt? I told her just “not well, but nothing specific”. She said, “malaise”.
She was right and now I have a word for feeling unwell but not sick. Or, as you put it, “icky”,

@christina3444 “Malaise” is the perfect word. Didn’t like “icky”, but wasn’t sure what word to use! Thank you Christina. Wishing you well!!!