Listen to this about ET : youtu.be/g8qM3XsJBUU?si... - MPN Voice

MPN Voice

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Listen to this about ET

SammieLou profile image
8 Replies

youtu.be/g8qM3XsJBUU?si=Zcw...

copy and play it on you tube

It’s about ET very very informative

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SammieLou profile image
SammieLou
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8 Replies
hunter5582 profile image
hunter5582

Thanks for posting this. Dr. Spivak was the first MPN Specialist I consulted with. He is a great doc! He is one of the giants in the MPN world with very clear and well-informed views; however, not everyone in the MPN world agrees with his views. That can be a good thing. the only way that MPN care will advance is by having these debates and relying on evidence to move the field forward.

SammieLou profile image
SammieLou in reply tohunter5582

Totally agree, opinions vary always too

Lets hope it can be looked into for all our sakes

monarch5000 profile image
monarch5000

Shows how deeply divided MPN specialists are among themselves about drug treatment choices.

myllo profile image
myllo

Thanks for that great post. It’s really encouraging to hear an expert’s opinion on why Hydrea perhaps doesn’t work in lowering platelets.

KLCTJC profile image
KLCTJC

very informative! And I don’t have ET, but makes me feel even better about my current treatment. Thank you

lakeview65 profile image
lakeview65

I just watched, Thank you for linking this video. I have been on Hydroxyurea for 3 years now, sailing along. I am active and feel perfectly fine. My MPN specialist tells me I am boring. Now I feel like I am just doing more damage to myself by taking the Hydroxyurea. The concerning issue I have is that my ASKL1 allele burden is 32% and I have a 2 grandparents who had forms of blood cancer. Let's see what one of my Dr's say when I question them about this.

SammieLou profile image
SammieLou in reply tolakeview65

please let me know what sort of response you get

All the best

Sam

Purplechoclover profile image
Purplechoclover

Thank you for this information, ive been put on pegysis interferon alpha 2a and got some side effects but tolerating them and its dropping my platelet levels nicely

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