ASH ( American Society for Hematology) conference

[Rachelthepotter]

youtu.be/SnF1AEuxqQM(Not working as expected?)

This is the roundtable discussion about MPNs from this year’s ASH. Big haematology conference in the USA. Good stuff on MF drugs

Rachel.

[katiewalsh]

thanks. How are you? Katie

[Rachelthepotter in reply to katiewalsh]

Hi Katie. TBH not the best. Struggling with fatigue, misery and muscle weakness. Local ( Surrey - Marsden) NHS services grim, and my husband died a year ago from a brain tumour. Might still end up with Edinburgh flat; but endless delays with flat not yet finished. And you?

[katiewalsh in reply to Rachelthepotter]

I’m so sorry to hear this and hope at least your living & NHS services improve soon. It’s hard not to be despondent with all that. I’m still very lucky. As long as I get a lot of sleep at night & naps during the day, I feel pretty good. Of course it’s only because my husband can take care of most household work. By 5-6 pm I’m exhausted. But at least I have some hours when I feel ok. I’ll keep my fingers crossed things improve for you. Katie

[Rachelthepotter in reply to katiewalsh]

Thanks, Katie. Glad you have some good times.

[katiewalsh]

forgot to mention I’m not up & active in the morning. I have to sleep until 11 am or noon & take an afternoon nap. But I figure even though that’s not a lot of hours feeling well, it’s probably 5. I find sitting in a chair that’s cushioned & at a slight incline (not a straight back hard chair), I don’t feel as bad. It’s surprising how much energy it takes to sit in the other type of chair. I don’t know if you’ve tried this but it might help you.

[EPguy]

Thanks for the link. Some selected items. My favorite, reproduced here:

"The work on MPN is now so central to ASH, so many people working on it" "With so many resources on it it will get solved."

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Gail Raboz: MPN researchers used to have nothing to talk about and had to stay in the "unpopular building" at ASH.

Combo therapies are the next thing.

Discussing Richard Silver, "grandfather of MPN" He was considered nuts for promoting IFN. He's pleased to see recent acceptance of IFN.

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Linda Resar: HMGA1 protein is Absolutely required for progression. It represses markers that would allow the immune system to see the MPN cancer cells. They found drugs that can reactivate those markers so immune system can attack. This may be relevant to the resistance of Jak2 to the new immune therapy ideas. (CALR has less of this problem)

See my recent post, via Hunter, on this new discovery:

healthunlocked.com/mpnvoice...

Looking to IFNs for young. She is intrigued by the VAF (allele burden ) reductions from IFN and wants to do this for the young. That's one expert vote for VAF being important.

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Shaghi Gaffari: lots of new insights into cells. One easy to understand item "make better stem cells for SCT". That is useful.

"The work on MPN is now so central to ASH, so many people working on it" "With so many resources on it it will get solved."

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Angela Flieschman: Inflammation and familial MPN. MPN pts and their families cannot turn off inflammation signals, most people can shut it off. Looking for markers that predict MPN. "Watchful waiting is not going to cut it anymore" Lifestyle changes are part of this.

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Laura Michaelis: We can now measure at low levels and we can intervene early for best effect.

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Ktisten Pittit: Jak-is were the big thing recently, now we're digging deeper into the cellular pathway for more options