Triple Negative Question

[Nrl303]

if you truly are triple negative PV for example, how does one treat that? Interferon targets the JAK2 cells & normal cells correct? Would interferon just target the cells in general if there is no mutation. However, if an immunotherapy cure ever comes around that can fix the JAK2 mutation… would that still be able to fix the marrow of people who have no mutation?

[Xuzy]

Are you triple negative?

[Confusingdisease in reply to Xuzy]

are you the only triple negative person with PV on this site with normal bone marrow biopsy & EPO?

[Xuzy in reply to Confusingdisease]

Yeah this was 5 years ago. I wouldn't say only..

It could be the test is less sensitive so couldn't detect, also besides major 3 driver mutations there are others which can contribute to pv.

[Nrl303 in reply to Xuzy]

so is the only way to cure you through a BMT if a JAK2 cure comes out? Also, you haven’t retested the JAK2 mutation in 5 years if concerned about accuracy?

[gvibes]

Hi. I am not sure what triple negative PV is? Isn’t that term applied to ET? 95% of PV cases have v617f mutation and another 3% has an exon 12 mutation, both JAK2. I’m the rare exon 12 and what my doc told me was that all the research is done on the common mutation- they just can’t get subjects for the rare cases. That being said interferon has worked quite well for me without any direct research for my mutation. I am sure it has reduced my mutation i.e. allele burden.as my dose is now quite low. So what I am trying to say is there is likely very little research on your particular type. Also what I have read is the detailed workings of interferon are not completely understood. Take care.

[Confusingdisease in reply to gvibes]

My heam says he’s never seen a case of PV with with no JAK mutations and normal EPO