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Essential Thrombocythemia: Looking for information and support

Posted by shenriq @shenriq, Jun 4, 2018

I was recently diagnosed with Essential Thrombocythemia, a rare incurable blood cancer. Platelet count aside, I am asymptotic. This current condition morphed from (constitutional) thrombcytosis, something I’ve lived with for 25+ years. While the new diagnosis was the result of a bone marrow aspiration and biopsy, my age was an additional factor, which was completely disarming, having been walking around unwittingly for the past 8 years! While at the low end of risk for clots, heart-attacks and stroke, nothing has truly changed - except the “C” word. No chemo yet, but active discussion about hydroxyurea. Uncertainty about ET is anxiety provoking and swoethatl, but I’m feeling betrayed by my blood. I’m looking for all information about ET, the chemo and support.
Thanks!

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Profile picture for garyr443
garyr443 | @garyr443 | 4 days ago
In reply to @nohrt4me "ET was reclassified as a cancer of the bone marrow by the World Health Organization in..." + (show)
Profile picture for nohrt4me (Jean) @nohrt4me

ET was reclassified as a cancer of the bone marrow by the World Health Organization in about 2006. Some oncologists do not accept the reclassification, some may not know about it, some just don't want to deal with patients getting emotional about the c-word.

Your life insurance company likely classifies it as cancer, and may deny your application to increase your life insurance on that basis or to charge you higher premiums.

Many cancers now are chronic, in that they are managed by meds vs surgery/chemo/radiation (what my old oncologist called slash/burn/poison). There was a recent article in the Washington Post a few years ago about this. Hopefully people won't be paywalled out:
https://www.washingtonpost.com/health/2023/06/17/cancer-treatment-advances-chronic-disease/

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@nohrt4me Glad I have Medicare Advantage Plan, then.

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sunnylane | @sunnylane | 3 days ago
In reply to @nohrt4me "ET was reclassified as a cancer of the bone marrow by the World Health Organization in..." + (show)
Profile picture for nohrt4me (Jean) @nohrt4me

ET was reclassified as a cancer of the bone marrow by the World Health Organization in about 2006. Some oncologists do not accept the reclassification, some may not know about it, some just don't want to deal with patients getting emotional about the c-word.

Your life insurance company likely classifies it as cancer, and may deny your application to increase your life insurance on that basis or to charge you higher premiums.

Many cancers now are chronic, in that they are managed by meds vs surgery/chemo/radiation (what my old oncologist called slash/burn/poison). There was a recent article in the Washington Post a few years ago about this. Hopefully people won't be paywalled out:
https://www.washingtonpost.com/health/2023/06/17/cancer-treatment-advances-chronic-disease/

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@nohrt4me
Could you cut and paste the Washington Post article here? Can't click and read it unless you subscribe to the Post. Thanks!

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drbart86 | @drbart86 | 10 hours ago
In reply to @garyr443 "@1995victoria I almost forgot that my ET is a blood cancer because my hematologist rarely mentions..." + (show)
Profile picture for garyr443 @garyr443

@1995victoria I almost forgot that my ET is a blood cancer because my hematologist rarely mentions it.

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@garyr443 LLS is now Blood Cancer United ( https://bloodcancerunited.org/ ). And it does have a large number of resources available. There are a number of resources available such as booklets, financial support, dietary support, events (such as conferences, light the night, Shred the Red, and many more), and one that is good as a peer-to-peer discussion ( https://bloodcancerunited.org/resources/patients/peer-to-peer-support ) where you can visit with another that also has ET (or at least an MPN since we are a rare animal).

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drbart86 | @drbart86 | 9 hours ago
In reply to @garyr443 "@nohrt4me Yep, somone here told me her doctor disagrees with that classification. Hope's he right." + (show)
Profile picture for garyr443 @garyr443

@nohrt4me Yep, somone here told me her doctor disagrees with that classification. Hope's he right.

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@garyr443 Cancer is where cells grow out of control - as such MPN's are cancer as cells/cell products are out of control. We are fortunate in some ways as we do not look like we have a disease and typically will not die from this as long as appropriate treatment protocols are followed. After three stints in the hospital as I was starting a trial, I really feel fortunate; I was on the blood disease floor (BMT, leukemia, lymphoma). I was able to freely walk the floor and getting glimpses in the room of others really made me thankful, as our journey, while not great, could always be much worse.

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