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Needing help understanding ET and how it affects my life

Blood Cancers & Disorders | Last Active: Oct 29, 2023 | Replies (29)
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@lynnevb

https://www.nccn.org/patientresources/patient-resources/guidelines-for-patients/guidelines-for-patients-details?patientGuidelineId=27
This is the very best site I have found to explain ET and PV.

It will tell you more than your PCP or your local general oncologist (unless of course your local oncologist is at a large institution where they can specialize in this particular group of cancers).

PV and ET are pretty rare so please do not be afraid. Read and let's support each other be as healthy as we can while we navigate with life with this particular problem.

Lynne

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Replies to "https://www.nccn.org/patientresources/patient-resources/guidelines-for-patients/guidelines-for-patients-details?patientGuidelineId=27 This is the very best site I have found to explain ET and PV. It..."
eileen11108 | @eileen11108 | Oct 29, 2023

Lynne,

Thank you. The reference you mentioned is really great.

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nohrt4me | @nohrt4me | Oct 29, 2023

Thank you! I can't say how reassuring it is just to read that "most people have symptoms" related to their MPN. For so many years, patients were basically gas lighted by clinicians who believed ET patients had no symptoms. We're not asking for narcotics, for pity's sake. But most of us had to figure out on our own that we need a white noise machine for the tinnitus, compression stockings/gloves for the "tingles," and stress management/life simplification/exercise for fatigue and brain fog. It would be nice if docs could acknowledge these symptoms and offer these easy remedies.

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ttown | @ttown | Oct 29, 2023

Wow, Lynne....What an amazing amount of easy to understand information. My platelets have now been in the normal range for six months for JAK2 ET, for which I am so grateful. But this that you have shared with us gives so much more information than I had ever found. I skimmed over it (it is a lot of info), and is done is such an informative way. Thank you for sharing.
Ginger

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