← Return to Like to know more. Just told I have Triple Negative MPN.

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@eloise999

I have diagnosis of ET triple negative. So I am missing the common genetic drivers. However, my bone marrow biopsy shows I have a mutation on ASXL1 G646fs. I have read this mutation has been correlated to poor outcomes, ie, progression to MF or AML. Are you aware of any research on this mutation and clinical outcomes or treatments? Thanks!

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Replies to "I have diagnosis of ET triple negative. So I am missing the common genetic drivers. However,..."

eloise999, learning that something's "off" is bad enough. Having almost no information about that something makes it a thousand times worse.

Unfortunately this is the reality for ETrs like you and me.

And odds are, your oncologist is probably not an ET triple negative expert.

So all we can do is try to find online information. This can be helpful BUT it's a very imperfect method. One source will contradict another. Some articles are so technical that they're hard to interpret. And there is absolutely nothing that speaks directly to your personal situation.

I hope other triple negative ETrs will chime in, because learning from others' real life experience is so valuable.

We all fear progression. That was my worst fear when I was diagnosed.

I'm much less worried about that now, because from what I've read, that's not a likely outcome for most ETrs.

You are in a scary place, eloise999, but you are not alone, and you will gain strength from others' support and experience. To better days ahead.