Article re genetic mutations

[Paul123456]

Useful article discussing genetic mutations that impact prognosis. The table is especially interesting in terms of listing % chances.

cancernetwork.com/oncology-...

[Bluetop]

Thanks for this -I have not even had a bmb and was thinking of pressing for one -so this article will be very useful

[mhos61]

Thanks Paul for your continual research on our behalf.....much appreciated!

[beetle]

Thank you for posting Paul. Your contribution to this group is invaluable. This is an interesting article and from my point of view quite reassuring. Mind, at 24 years survival to date, I must have something good going for me. Hopefully in another 24 years they will have these diseases licked!

[crapaud]

Just out of curiosity, In the § concerning PMF, what is meant by the sentence 'amoung 127 Jak2 V617F- positive patients.... '

Were the patients Jak2 negative or Jak2 positive?

I was part of the Jak2 -ve, triple negative family spoke about a little lower in the article with rather poor median survival expectancy which explains why I was advised to undertake a SCT without delaying too long.

[Paul123456]

My understanding is that JAK 2 V617F is what we refer to as JAK2 +ve.

Hence V617F- means not JAK2+ve. I think this is your interpretation as well?

[crapaud]

That's the interpretation I also made - as you can determine from the rest of my reply (triple negative and sct); my question was purely academic.

On the MPN-NET site this article has started a detailed debate about alle-burden.

Luckily (normally) that is no longer a concern for me.

Thanks

Gary

[Paul123456 in reply to crapaud]

Gary

How are you doing nowadays? Has your QoL improved to the point where minimal bone/joint paint? I know it’s been a long road. Hope you are finally over GvHD issues?

Best Paul

[crapaud]

Thanks for asking Paul.

QOL is a strange thing to reply to,

compared to life before MPN things are no longer what they used to be, compared to early diagnosis phase things are much better (No more night sweats, no more continuous infections/coughs/swellings....) no more questions about 'will I survive?'.

Before SCT my wife was told 'we've done all we can - cross fingers and pray;he's too weak for the transplant ' So I've come a long, long way.

GvHD has left a few traces though, aches and pains in joints, itchy skin. My next challenge is to rebuild my life - too young to retire, but late 50s with a big hole in my CV for illness is not great for interviews. And I must admit I feel tired from time to time.

But I'm here, living with a lovely wife and sons and ALIVE. To have the 'Q' in QOL, you have to have 'L' and thankfully that is back under control.

Take care.

Gary