Listen to this about ET

[SammieLou]

youtu.be/g8qM3XsJBUU?si=Zcw...(Not working as expected?)

copy and play it on you tube

It’s about ET very very informative

[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 in reply to hunter5582]

Totally agree, opinions vary always too

Lets hope it can be looked into for all our sakes

[monarch5000]

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

[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]

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

[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 in reply to lakeview65]

please let me know what sort of response you get

All the best

Sam

[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