Primary Myelofibrosis: How did you come to terms with the diagnosis?

@crsimon5 Hey Connie!! Don't meet many!! Best wishes to you. Yes! Get to a specialist!! Blessings!!!!!

Hi again@crsimon5,
I totally agree that it is important to see a true MPN specialist and not a general oncologist/hematologist who is expected to know it all as in my experience, they do not. I changed my insurance 1/2026 for that reason. I will finally see a true MPN specialist for the first time soon at UCSD in July. I waited for the head MPN specialist there for myelofibrosis and CALR so I hope to learn more too. I also have other referrals to UCSD from my new primary doctor for ortho/hand surgeon, dermatology, and even infectious disease to rule that out in my right ring finger as the last hand surgeon I saw in April 2026 said my MRI with and without contrast looks like either a bone infection or a bone space infection to him. I do have high platelets consistently on labs the past almost 1.5 years but nothing else. I have been taking low dose aspirin closer to daily since being on a trip out of the country and seem to be tolerating it. I guess it was very confusing to me also as the oncologist/hemotologist I had initially told me not to take low dose aspirin and then she changed her mind, kind of like how she first diagnosed me with essential thrombocytosis and then changed it to primary myelofibrosis one month later. So who know what I really have. It doesn’t matter as I feel just fine after being diagnosed almost 1.5 years ago and even after much excitement and activity on our trip out of the USA. I, like you, are doing all the things you mentioned that we can control.
Wishing you and everyone well.

Pleased to inform you all that my referral to Johns Hopkins got approved by my insurance and I am expecting a call back to get an appointment with the director of their MPN clinic. I'm really excited, optimistic, and grateful that I have this opportunity to understand more about this disorder and what it means for me and my family. I will keep you all posted. You all have been a Godsend and I'm so appreciative of your words of encouragement!

Connie,
You asked about how we come to terms. Let me give you a bit of background first.

My primary MF with JakV617F was discovered via a routine checkup with CBC that showed a very high platelette count (about 650) after which my primary care physician's office called and sent me immediately to the emergency room for 11 hours of waiting and testing. The end result was the doctor saying you should have terrible symptoms, we don't know what is wrong with you, but you need to see a blood cancer specialist as soon as possible. That doctor told me I should just wait and see since I had minimal symptoms. I was not impressed with him so I called Mayo and their referral line sent me to Rochester. My oncologist is actually a researcher and said that while I was (and still am) in very good health with minimal symptoms, I was at high risk. I was confirmed with fibrosis at medium level. I am a PhD researcher (computer science, not medical), so I started reading medical research studies on primary MF with JakV617F and found out that my life expectancy was about 30% at 4 years after diagnosis - not good. She suggested I meet with a transplant specialist. He was concerned that my spleen was already too large (23.7cm) for a transplant so in January 2026 they put me on Jakafi. I have had symptoms with that including high blood pressure, GI issues, increased sweating, and occasional vomiting. All manageable. After three months on Jakafi, my spleen is 17cm and I am headed for stem cell transplant!

Now a year after my first Mayo appointment, I will be arriving at Mayo for a transplant next week. Let me also mention that I am 65 and just got married last year on May 10th (after preliminary diagnosis but before the Mayo bone marrow biopsy).

So how do I cope - two primary things. First, I have felt an amazing peace since early on - the Holy Spirit has given me comfort and I truly believe that Jesus has saved me so whatever happens, I will be ok. Second, my husband is a former respiratory therapist and an amazing man who is totally supportive and has already said that when my hair falls out he is going to shave his head to show he is with me all the way. He will be my caretaker at Mayo (with my best friend being backup). I have asked family, friends and our church members to take care of my husband if I God takes me to heaven with this disease, but I really do feel like everything is going to be fine.

From what I have read the CALR mutation may be an advantage - take all of them you can get. Stay active and do check with a specialist who can answer your questions and give you the best possible understanding of your options.

Use your faith to find peace and if you do not know Jesus Christ as your savior, please explore that. The peace that brings is truly life altering.
All the best,
Lorie

Thank you for your response. My heart breaks at your news.

My first priority is to get back to church, which i've been away from for some time. Prayer does help but I need to do more. I wish you all the best in your transplant journey and truly hope that all will go well. Peace and love to you and your family.

Connie,
I had also been away from church and God for many years and when I got this news but felt entirely calm, I was certain that Jesus was my Savior and that the Holy Spirit was giving me peace with everything. I thank God every day for Him bringing me to my husband and opening my eyes to the relationship that I was neglecting with God. What an enormous blessing no matter what befalls on earth.

I will pray for your healing and peace. If there is anything I can do to help you as you struggle with this disease, please let me know. Also know that Lori is an amazing resource - her volunteer work provides great insight and practical assistance as well.

All the best,
Lorie