I noticed that both my hematologists avoid to use the word cancer when talking to me. When I got the diagnosis, the hematologist downplayed ET so much, despite the fact that I was in fever, pain and had so much brain fog I had to take a nap during the appointment. All these are ET symptoms, but apparently not for my doctor. So I was fine in his eyes. Being young was the reason
This was very detrimental as my partner thought and still thinks that ET is a bit like a headache, nothing scary, and… read more

Looking for a MF specialist in the Treatment department of OHSU. Apparently, Transplant is a different department than Treatment.
My platelets are at 33...very low. And with low Hemoglobin constantly in the 6.6 to 8 range (w/transfusions every 3-4 weeks), ...I need help!
Now that Momeletinib is FDA approved, another option available. Can Pacritinib(Vonjo) be taken with Momeletinib?
Appreciate any feedback,

The drs tell me pv is super rare but that IM rare because I am only 32. I started having a ton of symptoms during the covid shut down..broke out in shingles for the first time, insane pain in my neck, upper back, ankles and knees, migraines every other day, brain fog, extreme fatigue and serious memory issues. So that was 2020 and I JUST FINALLY got a diagnosis this year! Its been a really hard few years getting through countless tests, phlebotomies and finally a bone marrow biopsy trying to get… read more

Hello all, let's starts by saying how grateful I am for this group. I enjoy knowing I can go here and ask questions with overwhelming and writing my own family. You all are my MPN family.🥰 So I am 47 and I am a teacher, and the teachers Union President and the head of the World language department and a mom of 2 and I'm getting older. So everyone understands that by itself is stressful. My question is, how do I know if what I'm experiencing is a new symptom or just life, I'm guessing I go with… read more

I have PV JAK 2 positive. My numbers have not gotten too high. I get pins and needles itching and and I’m tired. At work I have issues with instant recall of new laws and procedures.

I am hoping someone can help. I am 37 years old, and had a bone biopsy a few months ago to see if a vertebral lesion was malignant. It came back negative for a metastasis, but showed myelofibrosis. I was referred to a hem/onc who does not think it's an MPN because of my age. I just did 23 and me DNA testing, and it came back positive for the JAK2 mutation. The hem/onc now wants to do a bone marrow biopsy, but I don't think it's necessary as I have all of the diagnostic criteria for Primary… read more

🌟Anyone familiar with this
Says it’s a revolutionary specialized treatment for chronic infections, cancer, blood disorders, vitality, longevity, etc.

Apparently, many ppl do this worldwide for multiple reasons.
Reports say no known reported side effects and safe for all ages.

🌟I’m quoted it’s about $8,000 total, told the stem cells last for your life and they’re from umbilical cord blood with NO DNA from healthy babies and mothers
Said they’re tested to be safe and thankfully non- Covid… read more

My Hema said I could do it in their office. I’ve heard it can cause iron deficiency, anemia, loss of nutrients.

But it’s gotta be less toxic than an Rx, right? Seems all options have pros and cons? Some better and worse than others.
Thought this could be a good place to start for if and when I’m told baby aspirin isn’t enough.

New to all this mess and just started baby aspirin Jan. 31 but don’t even want to be on that.
🤷🏻‍♀️