Triple Negative --- MPN

[jeanr]

Has anyone had experience of being diagnosed being triple negative? I started out diagnosed with ET and now look like I'm myleofibrosis. I know I'm JAK2- and CALR- and I'm about to get the results from MPL testing. I know that survival is shorter if triple negative. Has anyone had experience with being diagnosed triple negative? Thank you. Jean

[WileyFrench]

Hi - I don’t think that survival is shorter. In fact Maz, site admin, has posted here before that the panel of experts she checked with say ET triple negative is actually the most benign of the MPNs.

[jeanr in reply to WileyFrench]

Hi--Thank you for your reply--I think it is if you are myelofbrosis/

[Mazcd Partner MPNVoice in reply to jeanr]

I'll check for you about MF and triple neg. Maz

[WileyFrench in reply to Mazcd]

Hi Maz - your post was in reply to cmg5935 (I hope that’s right) and you mentioned that the question had been asked of the panel at a recent MPN forum, with the response being that ET triple neg appeared to be the most benign of the MPNs. Hopefully that helps.

[mustabshra]

Hi.

I am triple negative with ET. My dr. Also thinks that triple negative is good with survival rate better than others

[jeanr in reply to mustabshra]

Hi thanks for reply --I think its different re ET.

[Orangemusic]

Hi I am also triple negative . I was diagnosed of ET last month. My doc just told me I am triple neg but did not mention any thing about survival. Need to check with him in my next visit.

[jeanr in reply to Orangemusic]

I think its different for ET-thank you for relying.

[jeanr in reply to jeanr]

replying not relying!!!!!!

[crapaud]

I personally was MF, MDS-U and triple negative. This resulted in a SCT for me 3yrs ago.

I can't give any comments on survival rates.

Gary

[jeanr in reply to crapaud]

Thanks for the reply glad the sct went well.

[eastwood1932]

Hi, I am triple negative as well, not sure what effect that has long/short term but to be honest I don’t think it has an effect on how my ET is treated and there is nothing I can do to change it. I realise it probably just means the scientists have not isolated the mutation I do have.