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I have non but do not have the jak2 mutation. Are there any treatments or clinical trials for non-jak2 patients?
There are two new clinical trials that I know of for CALr. One is a Phase I vaccine study out of Mt. Sinai in NY. They also told me about a CALr antibody study being done at several sites, one of… 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
MPNRF ADVANCING RESEARCH First US Clinical Trial for MPN Vaccine :
MPNRF proudly funds the first US clinical trial to test a vaccine that could reverse the effects of a mutation associated with MPNs, specifically the calreticulin (CALR) mutation.
Article below
It is a phase 1 study. The MPN specialist I am seeing for the trial (not my regular physician) seems to believe it is promising. I am receiving the vaccine regimen but not the vaccine regimen in… read more
Thank you all for the information
Hello lovely people 👋🏼
It’s me again ☺️
Is it safe to fly (4 hours flight) with platelets around 500?
If it’s okay, then any precautions or must do’s?
I am on anagrelide and aspirin
TIA
500 is not really that high.
Happy first day of spring!
I live in Connecticut, close to NYC or Boston.
Does anyone have an MPN specialist that they love and would recommend in this area?
Dr. Michael Mauro is an MPN specialist with Memorial Sloan Kettering. They are a phenomenal, attentive hospital system. His office is located in Bergen, NJ, but he does telehealth if needed. He's the… 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.
I think Patient Power is being our own best, fiercest, tenacious advocate, doing our own research despite what a Dr. may tell us, etc.
You, too. In this trial the bone marrow is optional. However, lots of bloodwork, EKG, echo, ultrasound, etc.
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
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.
