Hi Wazy,
I was 30 years old when I was diagnosed with polycythemia. It was treated with phlebotomies for 28 years. At that time my blood counts (hemoglobin) changed and I wasn’t needing phlebotomies anymore. While this seemed like a good thing at the time it turned out to be a precursor to Myelofibrosis. I was treated with hydrodreaux and Jakafi for close to a year but my platelet number dropped and a CT scan showed my spleen was severely enlarged. This was when I was referred to Dana Farber cancer institute in Boston. I went there and was told I had a 50/50 chance of being alive in another 5 years. I was 60 years old so I opted for the stem cell transplant procedure. This is the only way to cure the disease, but can be a risky procedure. None of my siblings were a good match for the stem cell transplant but another donor was found that was. My transplant took place on October 6th 2022 and I am happy to say I’m now feeling good. There were 6 months of dealing with blood transfusions after my procedure so they gave me a stem cell boost in March 2023. It’s been from that point on that things have improved. There were many days when I felt like things were not going to get better but I am a woman of Faith. I believe in God and the power of prayer and I surrounded myself with prayer warriors. A positive attitude is what kept me going. The will to spend time with my husband, kids and Grandkids was all I would focus on.

I’m praying for you and your brother. We are our best advocates. We know our bodies better than anyone else. Surround yourself with Doctors you trust and people that love you. Sending hugs and prayers 🙏♥️

Sorry, meant to say Waxy… spell check!!

Hazy, thanks. Your brother is young enough to consider a autologous bone marrow transplant. Only chance for “cure”. I’m too old for this, so haven’t looked into details of where to go for this. It’s becoming more common, but is a big deal… risky. RG

Thank you for your answers, he was good for 2 months post therapy, now again he feels fatigue, abdominal pain, pain in jaws and face, though the lab findigs are excellent. We are fron iraq, and there is no MPN specialist, we only have hematologist and hematological oncologist. I am concerned how long he may live like this, does he get any better? When blood counts drop? How can we manage to have SCT?

Prayers for all affected

Hi Wazy,
Cathy2’s response is exceptional! What part of the country is he from? How bad did counts go? How big is his spleen. How does he feel? All can help you/him to decide the best way to go. If you decide to do stem cell transplant (BMT), best close to home to minimize travel (frequent visits and chance of secondary contamination). Good luck and Happy New Year !! RG