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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Patty, Volunteer Mentor | @pmm | Jul 12 7:50am

In reply to @janemc "Beautifully said! The New York Times had a recent article about the risks of daily low-dose..." + (show)

Yes absolutely. You are wise to research this. Ultimately, our health profiles are each so unique that well-informed, thoughtful analysis will look different for each of us. Will you let me know what you decide?

janemc | @janemc | Jul 12 7:43am

In reply to @pmm "True that. My take-away was that for those who are at high risk for stroke or..." + (show)

Beautifully said!

The New York Times had a recent article about the risks of daily low-dose aspirin. Of course no reference was made to its use by those of us with MPNs.

Something I really liked about the Mayo link was the invaluable advice NOT to suddenly stop taking aspirin!

We have to research our options, then consult with our own trusted health care providers. One size doesn't fit all.

Patty, Volunteer Mentor | @pmm | Jul 12 7:33am

In reply to @janemc "Thank you for providing that link -- lots of good information there! May I note, though,..." + (show)

True that. My take-away was that for those who are at high risk for stroke or heart attack there is efficacy in low doses of aspirin but otherwise, benefits may not outweigh the risk. We each have to have accurate assessment of risk and benefit.

janemc | @janemc | Jul 12 7:10am

In reply to @pmm "@wisner I had a similar conversation with my PCP and hem/onc docs about baby aspirin. The..." + (show)

Thank you for providing that link -- lots of good information there!

May I note, though, that the discussion is of aspirin use by the general population, rather than by those of us with MPNs.

janemc | @janemc | Jul 12 7:03am

In reply to @chimo "I just started taking 1 capsule of Hydroxyurea 500mg per day. I wonder how soon afterwards..." + (show)

The answer, I think, is that it varies widely from person to person.

I'm on a fairly high dose of HU (ten 500 mg capsules / week). Other than scaring myself silly about taking the first capsule, I haven't had any side effects at all.

From postings here, I learned to never take HU on an empty stomach, and that drinking plenty of water during the day is beneficial.

This is the perfect place for your questions and concerns -- someone here will have good advice for you!

chimo | @chimo | Jul 11 2:05pm

I just started taking 1 capsule of Hydroxyurea 500mg per day. I wonder how soon afterwards a person could experiences side effects? …. If a person has that problem. Hope I don’t have any; I’m just curious. Thank you!

Patty, Volunteer Mentor | @pmm | Jul 11 11:11am

In reply to @wisner "I was diagnosed with ET 2020 when I was 86 and have been on hydrox for..." + (show)

@wisner
I had a similar conversation with my PCP and hem/onc docs about baby aspirin. The recommendations have changed over the years. Here’s what Mayo has to say.
https://www.mayoclinic.org/diseases-conditions/heart-disease/in-depth/daily-aspirin-therapy/art-20046797

Merle Richman | @wisner | Jul 11 11:00am

In reply to @biddypoppop "I have been living with ET for over 10 years. Also taking hydroxyurea for most of..." + (show)

I was diagnosed with ET 2020 when I was 86 and have been on hydrox for about 4-years to keep platelets in near normal range. Now almost 91, I am also on 500mg Eliquis twice daily and recently stopped taking baby aspirin on advice of cardiologist and oncologist. I had been taking baby aspirin maybe 25 +|~ years! In general it now seems doctors more concerned with bleeding issues should I fall… than with how blood thinners such as baby aspirin will prevent stroke! This council to drop baby aspirin comes at complete surprise after taking for at least 25 years. Anybody in same boat? Merle Richman

bosmac | @bosmac | Jul 10 10:15pm

Found this resource below that you may like to browse and see how they explain ET:

bluehorse | @bluehorse | Jul 10 5:28pm

In reply to @colleenyoung "@bluehorse, it is so easy to ignore one's own health when in the intense phase of..." + (show)

Thank you for your comment. I am doing ok....and I have decided recently to
get help from a therapist to deal with all the life changes . Sometimes I
think that I just stored all the stress and anxiety from that period of
time to deal with later....and then the ET dx on top of the losses,
moving and then this dx feels like too much. So the next steps are to seek
a therapist and continue with the healthy things I try to practice like
exercise , better diet and developing a support system in my new locale.
Sounds like you've "been there"....

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