Wow Steve, thank you so much for that answer. It really helps me understand a little more about this disease!
Hi all,
I have an MPN specialist that I have seen for 3 years and visit twice a year. Recently, my insurance changed as a result of turning 65 and the MPN specialist is not in network. Therefore, I will self pay and see her twice a year. Recently, I made an appointment with a hematologist in network for blood work and for renewing Hydroxyurea script. My question is whether to tell the hematologist that I visit an MPN specialist?
Thank you,
Thank you, I am aware and my husband and I for financial reasons chose Medicare Advantage. I spoke to my MPN specialist about this prior to enrolling and found out what would be charged for each visit… read more
My blood test showed platelets 904,000
The results of a bone marrow biopsy showed that I have myelofibrosis
Genetic test results showed that I was positive for the CARL gene mutation
Yesterday the doctor concluded: MF. (The doctor explained that my platelets were high due to MF)
Excellent resources- I think it does - I have PMF - primary MF but have thrombocytosis.
Hello
My husband has triple negative ET at the moment but still gets very fatigued and when he goes through times he has a virus/cold he becomes abnormally exhausted even more and it takes him more days to recover. I feel an FMLA would help alleviate some stress for him. In case a day off to recover on his worst days happens. Plus he’s having to take off work for blood work follow-ups at least every 3 months now if not sooner. But as we all know this doesn’t account for any specialist were… read more
thank you for answering my question. I seem to find out more from my other doctors than my hematologist. He says my fatigue and shortness of breath are not related to my PV & ET. He is the only doctor… read more
A friend is advising me to add green tea to my daily drinking water, because she said: "Green tea may be beneficial for people with thrombocytosis in some cases
Antioxidant effects: Green tea contains antioxidant compounds, mainly catechins, which have the ability to protect cells from damage caused by free radicals. This can help reduce the risk of infection and protect organs from damage
Anti-inflammatory effects: The natural anti-inflammatory agents found in green tea may help reduce… read more
I read that Dandelion Root tea, Hibiscus tea and Essiac teas are good as well as Green Tea. Anyone heard about Jason Winters Tea??
I’m hearing a few times now a supplement called Natokinnese can be taken twice a day every 12 hours as a safer, nontoxic alternative to the daily baby aspirin for MPNs.
Apparently vit c aids in the production process of red cells along with iron. I’m certainly not an authority on anything. Just know what I’ve read so far. I have a long list of questions for… read more
It was given to me for Chiro purposes but is doubling as an MPN body inflammation lowering supplement👏🏼.
You take 2 a day. I can def feel a great difference and just started it Wed. April 3rd.
Hoping this will help whoever reads this bc turmeric, ginger, etc. don’t do enough for MPN (and Chiro related) high inflammation.🙂
@A myMPNteam Member It’s called Inflammatone. A plant based anti inflammatory. Pics above.
I have been diagnosed in the last 5 months with Primary Myelofibrosis. Prior to that i have had thrombocytopenia.
One of the problems with Jakavi is it makes you anaemic To the stage you could become transfusion dependant Try and finds clinical trial in your area
🌟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