We do worry about our children possibly inheriting a blood cancer. As best we understand it, the JAK2 mutation is not inherited, rather it is ascuired; however, there is evidence that the predisposition to acquire the JAK2 mutation may be inherited. This is the JAK2 46/1 (GGCC) MPN-predisposing haplotype that you will find referenced in the literature. Familial MPNs are an area that is under active research to understand the issue in more detail.

I have the JAK2v617f mutation. It was ET but progressed to PV. My daughter is also JAK2 positive and is diagnosed with ET. I suspect she may be moving towards PV too. We both test positive for the JAK2 46/1 (GGCC) MPN-predisposing haplotype, which is not a surprise. We are both actively managing the MPNs and are doing well. She is on aspirin + monitor. I am taking Besremi.

We also have another condition, Neurofibromatosis Type 1, that is an inherited condition. NF1 is a separate condition nut is also a non-driver mutation that increases risk for progression.

We cannot control our genes. We can control the choices we make. For those of us with a family history of MPNs or other conditions like NF1, we need to make good decisions about our health. Awareness and monitoring, healthy choices regarding our lifestyle and what we expose ourselves to are essential. The best thing to do is to control what we can control and let go of the rest.

Wishing you and your family all the best.

No relatives with blood disorders at all.

I am impressed with your knowledge, Steve. I am new to this group. I am age 71. I was diagnosed 3 years ago with ET due to high platelet count and Cal R gene mutation. Breast cancer runs in my family. I don't have the BRACA 1 gene other relatives have had but assumed I might get breast cancer someday. I had never heard of MPNs until diagnosed with ET. As far as I know, I'm the first in the family. An unpleasant surprise but there are worse illnesses and so far Hydroxyurea has largely worked to lower platelets.

Hi Lisa,

I have ET with non-canonical MPL mutation that is shown to be inherited. My dad passed away undiagnosed, but he was suspected of a blood cancer at the time of his death, after being extensively checked for solid tumour cancers, and he had all the symptoms of high-risk myelofibrosis.
I read a couple of papers on the mutation I have and it seems to always be running in the family. The consensus still is that most MPN mutations are acquired, but it might be so due to the fact that we did not have the diagnostic tools we have now in the past.
I understand your concerns about the future of your children. But they know about this health issue running in the family, and that is a good start to keep an eye and get a timely diagnosis.
And most likely the future will bring more sophisticated diagnosis and treatment.

Many hugs of support,
Tatiana

HI Lisa. There's optimism, and then there's realism. Some of the people posting above have seen similar issues in family members. I haven't. My family members have had hereditary illnesses I haven't had, including breast cancer and diabetes. As far as I know, nobody has had anything related to an MPN. My doctors insist mine comes from too much sun exposure while growing up in Los Angeles, rather than from anything hereditary. Clearly it's a complex situation.