Anyone have Myelofibrosis (CMS-HCC)?

Hi Tim, I was diagnosed with myelofibrosis (JAK-2) in October 2025. Currently waiting for a second opinion from UCSF. Was prescribed Jakafi but because I am symptom-free, and concerned with the medication side-effects, I decided to wait and observe. My platelets remain high (fluctuating around 800-900k).
I would like to hear more about how jakafi is working for you (or anyone else reading this).
Gabriel

I was diagnosed June 2025 MPL mutation with SRSF2 mutation. I’m on a clinical trial for hemoglobin. My WBC and platelets are close to normal. No Jakifi yet but my spleen has started getting bigger. Mayo will do an ultrasound in March so will determine then if adding more drugs. I’ve heard the current opinions for Myelofibrosis are good for regulating blood issues and spleen. Are you considering a stem cell transplant?

@davi0937
My spleen and liver have advance swelling before I started the Jakafi, as well as fatigue and shortness in breath. I believe the spleen has become smaller only due to that are of my body no longer as swelled. But only info I have is monthly blood tests to confirm what is happening now. Did have a Cat-scan to verify the size of the organs, but nothing recent. I dont think I have the Jak2 issue but would have to check my tests again. Seems like I have had all kinds of tests. This all started because my Rheumatologist finding things in the blood tests they did not want to discuss without a hematologist looking at the results first.

@davi0937

@davi0937
Doctors said I am a good for stem cell replacement. But not sure I can survive the procedure. I am turning 65 this year and until I can get my health in a better place, not sure I want to try that yet.

@tim376 please reach out to this community including @loribmt . There are many who have been in similar situations and survived. Best wishes

Good morning, @tim376. You were very recently diagnosed with myelofibrosis, (MF) so I’m sure you have a great many questions about this blood disorder. This is a condition in which the normally spongy, blood cell producing tissue in the bone marrow becomes fibrous, resulting in abnormally shaped red blood cells, anemia, and an enlarged spleen.
So the symptoms you mentioned of having a swollen spleen and liver, fatigue and shortness of breath are right in keeping with your diagnosis.

There’s nothing you did to bring about this change in your bone marrow. As we age, we can acquire certain defects in our DNA that can set the ball to rolling, so to speak. There are a couple of mutations which can be behind the development of myelofibrosis. The main culprit is often a defect in the JAK2 gene.
Seeing that you’re new to all of this, I find it helpful to pass along informational articles from credible sources. That way you can learn more about what’s going on in your body and how your doctor is trying to help you.

Myelofibrosis:
~From Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/myelofibrosis/symptoms-causes/syc-20355057

~From Very Well Health: https://www.verywellhealth.com/myelofibrosis-7562192

JAK2 Mutation: https://www.verywellhealth.com/jak2-mutation-5217909

Your doctor has you taking Jakafi, which is a drug that inhibits the JAK gene. It sounds like you’re already noticing a change in your symptoms with less swelling in your abdomen. So it may be that you’re responding well to Jakafi with the side benefit of your spleen reducing in size. Considering you’ve only been taking this for a little more than a month, that’s very encouraging.

For some people, MF may be a progressive disease. When that’s the case, medications may not be enough to keep that from happening. Your doctor has an eye to your future with suggesting a stem cell transplant. If you are in a higher risk category, having a transplant may help ensure a longer, healthy life for you.

At 65 you are not too old to have this procedure, though transplant doctors consider many factors to make sure you are eligible and healthy enough to have the procedure. I was 65 at the time of my transplant…almost 7 years ago. It was a life savor for me as I’m cancer free and having a great 2nd chance at life.
A very good friend, whom I met when I had my SCT, was receiving her transplant for MF at the same time. She’s also now in her 70s and feeling super healthy with no signs of MF.

So, this will be a conversation to have with your oncologist as you continue with the Jakafi and begin to feel noticeably better after a couple of months.
At some point your oncologist may suggest meeting with a transplant doctor. If you have the option of a larger teaching or research hospital that would be the better choice for a SCT.

This diagnosis is probably feeling a bit overwhelming so I’m really glad that you joined us here in Connect. It can help to know there are other people going through the same thing!
You mentioned that you had gone to see a rheumatologist first. Have you noticed any change in the symptoms that had you seeking care from the rheumatologist?

Good morning.

I’m 71. I was diagnosed with myelofibrosis a few years ago. Was asymptomatic at first, then the symptoms appeared. Weight dropped from around 188 to 138. I was a bag of bones. Had difficulty getting up from the sofa .

Went to MD Anderson in Houston to see about having a transplant. They advised that my liver fuctions were too low vs. the risks from the procedure. U of Miami said the same.

Now treated at MCI / Baptist in Miami. They’re great!

Abdominal discomfort led me to the Baptist ER. PetScan revealed suspicion
for Erdheim Chester Disease (ECD, an extremely rare blood cancer). Biopsies (2) confirmed. So, I have myelofibrosis and ECD - very rare combo. I’d prefer surf and turf. LOL.

But, the good news is, there’s a pill for ECD from Genentech called Cotellic. The pill immediately attacked all my symptoms -symptoms we had thought were from the myelofibrosis.

I’m back to life. 170 pounds. Hemoglobin is 13ish. Not the same person as before the first diagnosis, but back to being me - more or less.

MCI gave me Jakafi last year, which totally crashed my levels. I end up in the hospital in need of a transfusion with hemoglobin in the 6s. I stopped the Jakafi and got better immediately. So, Jakafi isn’t for everyone.

Good morning, @samlupowitz Thanks for popping into the conversation today. What an interesting discovery and finally, the correct diagnosis for you! And what a relief that Cotellic is working to keep the side effects of Erdheim Chester Disease (ECD) under control. Somehow I missed an earlier post from you last year mentioning this remarkable ‘catch’ from your medical team.

Though you have a dual diagnosis of ECD, along with MF (myelofibrosis), it sounds like both are pretty stable. Ha, I did chuckle with your preference of surf and turf! 😅
Anyway, I’m happy to see you’re back to a more near-normal life…it’s amazing what our bodies can overcome with a little help.

Just curious, since Jakafi wasn’t compatible for you, are you under any other treatment for you MF at this time?

Good morning, Lori.

No, just the Cotellic. I do take some meds for blood pressure and thyroid, but that’s about it.

I will say this though - and it’s
kind of in response to your comment regarding the human body - I’m no expert - just a guy with common sense, I think, and my common sense way of thinking leads me to believe that extreme fasting - meaning, 48, 72, 100 hour plus fasts - are cancer killers. I further gather from all my experiences that although many doctors are wonderful - and many aren’t - there does seem to be a disconnect in the profession, whereby, as a whole, they don’t seem to be open to the very obvious idea that we are what we eat, we are how
much we eat, and that just maybe we ought to allow
our bodies to do what they’re capable of doing by not inundating our system with food every few hours - which our bodies simply don’t need. It’s just an addiction like all others. We don’t need to be constantly eating.