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.
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
Dead Janice,
Type A personality that you describe (energetic, high-functioning people) is a myth that does not hold up in scientific research. It was a myth used in the past to blame illness on the… read more
I’ve just started hydrea after two years of venesections and monitoring of my PV. Bloods are now in the red zone and finally have been taking the proffered hydrea. A few days in, I am struggling with extreme tiredness and low level dizziness. Can anyone tell me if this is normal in the early weeks of taking hydrea 500mg daily?
Hydroxyurea messes with my stomach to but I'm still greatfull for it. Wish you the best!
I received my diagnosis with no symptoms on Nov 30 2023, recently in the last 2 weeks I have had extreme fatigue at 6:30 at night and I weird burning tingling feeling under my skin. Does this mean it is processing? Should I call my doctor?
I believe every 3 or 4 months, even by telemed, and cbc/cmp labs monthly would be better monitoring.
Probably 6 hours.
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
I was diagnosed with ET two years ago and have been on HU 500 mg per day since then. I had been having night sweats a few years before but as soon as my platelets dropped below 400 the night sweats disappeared. However; as soos as my platelets rise again they are back. Worried that's a sign I am progressing to MF.
Mmm, you are so right. I too find I get my best information through this and other support groups. My doctors tend to play down most of my worries, perhaps in an attempt to ease my concerns, although… read more
Hate to bring up perhaps a touchy subject, but has anyone out there had experience with cannabis as a treatment for chemo side effects or even for MPN symptoms? Since I live in Maryland there is no longer legal issues, no particular stigma since majority of voters gave a go ahead on legalizing the product. For obvious reason, there is little to no hard data on this issue. Need to know what anecdotal info there is.
Years ago a friend of my husbands was having chemo for his prostate cancer treatments side effects nausea and vomiting
He said one puff of the joint and he was good to go. I believe there is a place… read more
I have had ET since 2001, on hydroxyurea almost since the beginning and have just recently been diagnosed with PV.
My hgb and hct have been stubbornly high over the summer, with three increases to my hydrea in the past 6 weeks that have not significantly lowered them.
Had my first phlebotomy on August 11th, my second yesterday, am scheduled for a third on 9/5 and these will continue weekly (with labs preceding) until my hgb is down to a level acceptable to my hematologist.
I have tolerated… read more
I have had 11 phlebotomies over the past 8 months. I get very tired for at least a week after the procedure. Looking to enter a clinical trial program in January that hopefully will lead to no… read more
Dear Kathyryn,
Shingles being the reactivation of varicella-zoster virus (VZV), the same virus that causes chickenpox, it is usually linked to our immune system being a bit dysfunctional. MPNs can be… read more