@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?