TET2 mutation?

[Joall]

I have been told my last bone marrow biopsy was positive for Jak2 which I have heard off but not TET2? Does anyone else have this mutation or know what it means?

[Paul123456]

Yes I’m PV JAK2 and TET2. I’m told no significant prognostic value other than might inhibit the effectiveness of Peginteferon according so one limited study. However I’m getting good haematological response to Peg, waiting on molecular tests.

[Joall in reply to Paul123456]

Thankyou Paul. That's reassuring. It took 11 months to get these results but I wasn't told what it all means.

[1466 in reply to Paul123456]

I am JaK2 positive and TET2 positive. This was determined through my blood test. I am awaiting a bone marrow biopsy in two weeks to be done. If there’s any information you have about a person that has these two mutations would be very helpful. Thank you

[francesb]

Hi, yes I'm Jak2 pos plus two TET2 mutations. I was told these can indicate CMML but that it was not this in my case so pretty much told to ignore it and stop thinking about it. My diagnosis is myeloprolifitive disorder non classified. In other words no clear diagnosis. I googled TET2 and found a bit of info but nothing that helped really. Good luck! Frances.

[Joall in reply to francesb]

Hi. Thankyou for your reply. We sound very similar, I'm showing signs of PV, ET and MF but none of them conclusive, so put into the non classified box. Watch and wait is a familiar line.

Take care

[1466 in reply to francesb]

I am JaK2 positive and TET2 positive. This was determined through my blood test. I am awaiting a bone marrow biopsy in two weeks to be done. If there’s any information you have about a person that has these two mutations would be very helpful. Thank you

[mammared]

In my research, I have gound that some patients are triple neg and have none of the driver mutations but some of these will have modifers. These modifiers include TeT2. Hope this helps. I am a triple neg. Polycythemia looking for answers.

[1466 in reply to mammared]

I am JaK2 positive and TET2 positive. This was determined through my blood test. I am awaiting a bone marrow biopsy in two weeks to be done. If there’s any information you have about a person that has these two mutations would be very helpful. Thank you

[Joall]

Thankyou for your reply

[1466 in reply to Joall]

I am JaK2 positive and TET2 positive. This was determined through my blood test. I am awaiting a bone marrow biopsy in two weeks to be done. If there’s any information you have about a person that has these two mutations would be very helpful. Thank you

[Paul123456 in reply to 1466]

What drug are you on and how high are your counts?

I’m still have good response to Pegasys despite TET2/JAK2 despite some Hems (based on limited research) thinking TET2 reduces Peg efficacy by restricting pathways via inflammation.

Imo TET2 does increase our risk profile a bit but it’s not one of the ‘nasty’ mutations. It can correlate with high Allele Burden - what’s your? Mine was 72% but dropped to 50% after one year Pegasys

[1466 in reply to Paul123456]

Thank you for your quick response. I started on Hydrea but had some itching and hives and the doctor elected to switch me to Jakafi. I am 72 years old and was just diagnosed two months ago. My platelets have been around 550 and I go again in two weeks to have it rechecked. What do you mean by Allele Burden?

[hunter5582 in reply to 1466]

JAK2 allele burden is the percentage of the alleles on the JAK2 gene that are mutated. More than 50% is indicative of a more severe course of the illness.

[1466 in reply to hunter5582]

From what I can interpret Jak2 18% and Tet2 21%. There’s a lot of information with that as far as exons or chromosome but I don’t think those are important. Are you familiar with MDS / MPN ?

[1466 in reply to Paul123456]

i’m On Jakafi and if I can sort through the medical terminology JAK2 is 18% and TET2 21%. Are you familiar with crossover disorders such as MDS / MPN?

[hunter5582 in reply to 1466]

The only thing I am familiar with is the possible progression of a MPN into Acute Myeloid Leukemia. My understanding that progression into Myelofibrosis would still be considered a MPN. Likewise, reaching the spent phase of Polycythemia Vera would still be considered a MPN. I know that some MPNs are not always clearly one thing or another - existing on a spectrum of disorders. I am thinking it may be the same thing with a MDS/MPN crossover. The genetic drivers behind all of this are complex and it seems that some of us do not fit into a neat diagnostic category. That is why it is so important to find a hematologist who also is a sub-specialist in these rare blood disorders. I am also doing lots of reading on my own to bolster my own understanding. Starting with patient education sources, then branching out to professional literature. All the best on your journey.