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My MPN specialist recommends no treatment other than a daily low dose aspirin. I am 67 years old without history of thrombosis or other co-morbidities. I was diagnosed in 2022 by routine blood work and BMB and am currently asymptomatic and active. Thank you.
Hi Hannah,
I had a fast look through the studies I saved over the past 4 years, and I found some guidelines for practitioners that I downloaded from somewhere years ago and it is stated there that in… 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.
🤷🏻‍♀️
Forgot to include the 20 year longevity study. The Anagrelide < HU study was separate from the phleb + aspirin < HU < interferon study.
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
I was told by an MPN specialist that they can see everything they need to from a tube of blood. A biopsy confirms what they suspect from labs. Confirming gives them a better idea of what they're… read more
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 mam
I'm 32 and have myelofibrosis.
I also search for same age patients often to understand the symptoms batter.
I have hip pain... keeps me up at night. No clue if it's arthritis, bursitis, or just joint pain from ET. I'm going to see the osteo doc soon.
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 go to MDA and they accept my insurance. I just got on Medicare, but they seem to indicate they will pay. You do need to see MPb specialist. The local oncologist/hematologist doesn’t usually have the… read more
My husband has Jak2 ET. He’s currently sick w/COVID for 2nd time in a month. Took Paxlovid and symptoms got better. Now sick and positive again. Is ET considered an immunocompromised disorder? Seems regular docs don’t know a lot about ET.
Dear Debra,
Some doctors tend to minimise risks and use absolute terms. In absolute terms, someone with ET only and without treatment might not fit the bill of being immunocompromised if by… 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
Tatiana, I was only sharing my single person experience. I'll add, I was quite sick when I had Covid.
The trial for immunity measured 52 different 'proteins', antibodies related to sars covib2..And… read more
In Spain we have universal and free healthcare. everyone receives free medical assistance
Probably 6 hours.
