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!

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

lynn22 | @lynn22 | Oct 18, 2023

In reply to @docoltun "What kind of bar? I have gotten crazy, debilitating leg cramps occassionally (not the kind you..." + (show)

Sorry to hear you are suffering. Just a normal bar, we just bought a cheap one, in fact the first one he had was one of the small freebies he took from a hotel room! Hope it helps.

Colleen Young, Connect Director | @colleenyoung | Oct 17, 2023

In reply to @sdduan "Triple Negative Essential Thrombocythemia hi all, I have seen my platelet counts going up over past..." + (show)

@sdduan, I moved your message to this existing discussion where you can connect with many members living with essential thrombocythemia
- Essential Thrombocythemia: Looking for information and support
https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
As suggested by @eileen11108, you might also be interested in this related discussion:
- New to Pegasys for ET - advice please!
https://connect.mayoclinic.org/discussion/new-to-pegasus-advice-please/
What treatment options is your team suggesting for you at this point?

docoltun | @docoltun | Oct 17, 2023

In reply to @lynn22 "I thought it was crazy when a friend told me it helps with leg cramps in..." + (show)

What kind of bar? I have gotten crazy, debilitating leg cramps occassionally (not the kind you can rub or walk out...) and just have to stand and stretch. Since they seem to come in a waves, I'll try anything!! 2x4? 2" dowl rod? rebar? Thanks for the info!

docoltun | @docoltun | Oct 17, 2023

In reply to @ldz "Thank you for the suggestion, I will discuss this with my dr this coming week. Any..." + (show)

I never did have side effects...of course I was dealing with late-stage menopause when ET was diagnosed so....didn't notice anything odder than what had been happening for about four years! Good luck.

Lori, Volunteer Mentor | @loribmt | Oct 17, 2023

In reply to @tracey78 "I have nothing to offer except I am with you as far as need and want..." + (show)

Hi @tracey78 Welcome to Connect. I’m happy you joined the forum where you’ll find a huge new family of support. Were you recently diagnosis with ET? Are you having symptoms or on any treatments?

1995victoria | @1995victoria | Oct 17, 2023

I haven't had any symptoms from 3 years before being diagnosed and platelets rising, now 3 years after diagnosis, first year HU tried all variations, now on 2 caps plus baby aspirin daily. Don't have any symptoms, usual aging issues.

tracey78 | @tracey78 | Oct 16, 2023

I have nothing to offer except I am with you as far as need and want to know. I’m going crazy and it’s awful not knowing

lynn22 | @lynn22 | Oct 16, 2023

In reply to @agfromtheuk "Restless Leg Syndrome...Ok, I am going to put this crazy solution out there, this is an..." + (show)

I thought it was crazy when a friend told me it helps with leg cramps in bed which my partner suffers with. Put a bar under the mattress and no more legs cramps, who’d have thought it!

jroyer | @jroyer | Oct 15, 2023

I am 71 yo female diagnosed with ET in May this year. Started 500mg HU every other day to bring numbers down from 800s. July numbers went down, August went back up. So now HU every day and we will check again mid Nov. only side effects are hot flashes again (ugh-I thought I was done with that), and some times my shins will briefly feel sunburned — then it goes away.

ldz | @ldz | Oct 14, 2023

In reply to @docoltun "Wish I could understand why more doctors don't recommend Anagrelide for ET....when a new physician switched..." + (show)

Thank you for the suggestion, I will discuss this with my dr this coming week.

Any side effects on Anagrelide?

View More View Less

Please sign in or register to post a reply.