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Here's another source to consider. It's a 2017 scholarly article that discusses familial cases of MPNs (genetic predisposition. The authors say this: “In our experience, about 7% to 8% of patients… read more
My father had Mylodysplastic Syndrome (MDS). Is this considered a MPN?He died from leukemia in the end. He was diagnosed 10 months prior.
I and several other people on here have MDS and MPN and JAK2 mutation as well as other mutations. Leukemia is what we’ve been trying to avoid with treatment. Some have less or more of a propensity to… read more
Hello,
Does anyone have more than one mutation? I originally had just JAK2. However, now my blood is showing two other mutations..
JAK2 V617F
FBXW7
CALR
Thank you so much🫶🏼
When you were diagnosed with a myeloproliferative neoplasm, did your hematologist/oncologist recommend a thrombophilia profile (pathogenic mutations for factor II, factor V, factor XIII, MTHFR, PAI-1 4G/4G or 4G/5G, etc.)
I found out that I have PAI-1 (Plasminogen-Activator Inhibitor-1) 4G/4G mutation, which means my body makes too much of an inhibitor of fibrinolysis, fibrinolysis, in simple terms, being the process that does not allow blood clots to grow or accumulate. If one has this… read more
I also was only tested for JKAK2 mutation. That's a good idea to have further genetic tests as it will guide current and future therapies.
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
Thank you, Tatiana!
You are so knowledgeable. I asked my specialist at a recent appointment Whether my percent of mutated alleles that are JAK2 positive Have any correlation to the severity of my… read more
I see some of you talking about your allele burden though my hematologist has never mentioned that to me. How can I find that out?Is there a separate test for that? I did test positive for JAK 2 through blood work and had a bone marrow biopsy. Would my allele burden appear in one of those?
In my experience, the various mutations and corresponding VAF is from something called a Rapid Heme Panel. I had this test as part of the several investigative tests that were performed before I was… read more
We all need fun in our lives. =)
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
I have ET and my mom had Mylodysplastic. I’m thinking about my children’s future
My mother’s brother died of leukemia and one of her sisters has leukemia. I think they both were CLL
Mum is one of 12 kids. My uncle died 15 years ago. My aunty said she had chemo treatment about 7… read more
