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Essential Thrombocythemia: Making treatment decisions

Blood Cancers & Disorders | Last Active: 4 days ago | Replies (187)
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@lynnevb

https://www.nccn.org/patients/guidelines/content/PDF/mpn-patient.pdf
Here is a wonderful resource.
I have had ET since 2003. I am 70 yo now. I find this site informative.
Let me know what you think.

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Replies to "https://www.nccn.org/patients/guidelines/content/PDF/mpn-patient.pdf Here is a wonderful resource. I have had ET since 2003. I am 70 yo..."
nohrt4me | @nohrt4me | Dec 10 7:22am

Also 70, ET-CALR x 15 years. GREAT RESOURCE! Thanks for sharing.

Wish that doctors handed a link or copy of this to pts on diagnosis. Would prevent a lot of scary late-night appointments with Dr Google and bad treatment decisions.

It would also be good if there were a section on what patients can do to improve their health: reducing overall clot risk and fatigue factors. I think if patients understood that there ARE things they can control and improve, they would be less likely to freak out about the meds.

I think that the mental aspect of having a rare chronic cancer could also be discussed, not just fatigue and brain fog, but of feeling isolated and frustrated.

Thanks again!

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