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

How often do I see them? I’ve read some ppl just see an MPN Specialist and stop seeing a Hema.

Should I see both? My Hema doesn’t put forth much effort or time it seems, like a lot of Western Med. Dr’s.

Diagnosed ET, JAK2, PLT966 WBC11.6, hematocrit 44.9. These are all trending up each lab.

I am 44 and considered low risk as i have never had a stroke but i do have symptoms including mild pain in left side, some tingling in my arms and feet on occasion, headaches, occasional blurred vision more than usual, night sweats, tinnutis, fatigue and very mild fibrosis in the bones. I wonder if my ET is becoming PV too with my numbers.

He was proactive at least
ran extra blood tests, did a blood test to check blood thickness, a chest CT scan to look for clots, a pelvic ultrasoundand to check spleen if enlarged, and a transvaginal ultrasound bc longer heavier shifting periods last 3-5 years.

Chest CT Scan negative, pelvic ultrasound no clots either. I didn’t think there were but felt better doing it bc I have medical anxiety, and anxiety about Rx, meds, even some holistic herbs, etc.

I think period issue, being 44 and also… read more

I had told my oncologist that it was recommended to me to get a second opinion of a specialist who deals mostly with MPN'S. She seemed to be offended by this and I noticed a change in her attitude. Can anyone advise me how to come across to her that it's nothing personal but I just want to be sure about all the facts.

Any advice greatly appreciated. I currently have high platelets, red cell count low and white cells high. With this i have severe itching all over from being warm, to the point I could rip my skin off. Red rash around the neck and chest that becomes worse when I get warm. Hema/onc sent me for Bmb as he said I have all the symptoms of jak2 mutation, Bmb came back OK, anyone else in this situation that just has to get on with it as the cause is unknown so no medication can be given to lower… read more

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