Quick Links
About myMPNteam
Powered By
🌟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
Looking for a MF specialist in the Treatment department of OHSU. Apparently, Transplant is a different department than Treatment.
My platelets are at 33...very low. And with low Hemoglobin constantly in the 6.6 to 8 range (w/transfusions every 3-4 weeks), ...I need help!
Now that Momeletinib is FDA approved, another option available. Can Pacritinib(Vonjo) be taken with Momeletinib?
Appreciate any feedback,
Hi Jim, I'm being treated for PMF at OHSU also. They have great staff. My specialist is Dr. Saultz who is quite good. And you are right about the different departments and actually there are 3 that… read more
Thanks Jim😊
How are you?
I have PV JAK 2 positive. My numbers have not gotten too high. I get pins and needles itching and and I’m tired. At work I have issues with instant recall of new laws and procedures.
Thank you Tta, this list of symptoms really helps.
Probably 6 hours.
Thank you for the clarification. My Hematologist is not responding to my e-mails. I have to call her office tomorrow to follow up. I don’t understand why they can’t just respond. Usually they respond… read more
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
Thank you!
Many of us myself included have said we noticed changes in our bodies and self and symptoms long before we were actually diagnosed.
This bothers me bc I want and need to know, as do we all.
It’s wrong to go by the date we were diagnosed.
Anyone? Thoughts?🤔
Depending on the type of mutation you have, you can sometimes distinguish between inherited and spontaneous, as well as using VAF % between different testings (it is good to repeat the genetic testing… read more
Dear Mark,
It seems like you have familial ET, given that you mentioned your mother was also diagnosed with ET. And you seem to have two somatic mutations
I remembered about this study and maybe it… read more
