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Pros And Cons Of Doing The IV Thing That Removes Platelets. How Does This Work? How Often? How Long Does It Take Each Time? Does It Hurt?
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.
Early Side Effects Of Hydrea
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!
Anyone Else Experiencing Memory Issues? Not Age Related But Connected To This Cancer?
Are you PV or ?
Is It A Symptom Or Stress?
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
Dear Janice,
As long as you understand that that is just your opinion and your beliefs, and not what science says, that is fine.
People do function on their beliefs, but it is ethical not to give… read more
This One Is For The Ladies: How Does ET Affect Your Period?
I have Essential Thrombocythemia, Arthritis and Fibromyalgia.
I spoke with my MPN Dr about this recently when he asked about overall symptoms. With the ratio of women to men being diagnosed with ET apparently at 2:1 and also at relatively younger ages now… read more
Can New Symptoms Mean My ET Is Progressing? My Platelets In November Were Almost 900,000
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.
Which Medication Is Better For ET High Platelet Count ? Hydrea Or Interferon? My Platelet Count Is Over 1.8 Million. I Have The Cal-R Mutati
@A myMPNteam Member to be exact pegasys is a interferon with a added peg molecule
this lets interferon get in your body at a slow paste
interferon you need normally to take 3 times a week… read more
Is ET An Auto Immune Disease?
Probably 6 hours.
Polycythemia: Memory Issues
Hi All,
I am a 62 y/o law student. Over the last nine months or so, ever since my polycythemia diagnosis, I have noticed trouble recognizing, remembering, and naming other law students on my campus. These are people I feel I should know. I wonder whether my blood-sludge is decreasing oxygen transport to my brain. I worry that this problem will get worse and affect my capacity for critical analytical thinking.
Online reading has not indicated polycythemia as a reason for such memory trouble… read more
Wellbutrin is prescribed for depression and smoking cessation, but it is also used off-label for ADD/ADHD. So I take a small amount to fight the brain fog. It is working! It also helps fight my… read more
Difficulty With Diagnosis
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
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