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As long as we are proactive
Janet good question. I know that you can’t donate if you have an MPN. Linda
Is a baseline bone marrow biopsy standard in the diagnosing of a MPN or for monitoring it?
Dear Cindy2,
A bone marrow biopsy is a standard for diagnosing essential thrombocythemia and primary myelofibrosis, and even for polycythemia vera
A responsible hematologist will never put a… read more
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
JHello,
I'm 35F ET CALR+ with BM Fibrosis=1, plt>1 mln, no medication just followups.
By reading the last blood checks i found a comment from the lab saying "patient known for ET.
Thrombocytosis with an isolated
blast and rare reactive lymphocytes till an isolated plasmacell ".
While in previous comments it was never found.
All other values were fine, besides the plt of course.
Is it something that might happen in ET
Has someone experienced it?
I'm starting to get really worried I might… read more
Nope, except for the one that says a person has to have more than 20% to have a high risk for some kind of leukemia. I can't remember where. I just found out my gallbladder is swollen with no stones… read more
My new oncologist is sending me back to my cardiologist because he is worried about one of the prescriptions I take that is a calcium channel blocker. My PCP prescribed it. Oncologist wants it… read more
We all need fun in our lives. =)
Yes, I definitely have memory issues!! I'm afraid it's from the ET itself or the HU. I feel so self-conscious when I'm talking to someone + I forget a word or 2, or even forget what I'm talking… read more
Hi, I’ve recently been diagnosed with ET and the Jak 2 mutation and platelet count around 600, I’m 61 with no symptoms so far, so this has been a massive shock.
I’m taking aspirin but reluctant to start taking Hydera which will be recommended at my next appointment at the end of the month.
Is anyone else here from Scotland? What had your care been like are there any real specialists anyone has seen ???
I do not have an answer but I am experiencing the exact same thing…I’m female 65 and never sick…I am overwhelmed with this news.
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