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.

et1055 | @et1055 | Nov 4 11:06am

In reply to @sdduan "just want to share what I came across on internet regarding ET and treatment options. This..." + (show)

These discussions are very interesting. Thank you for sharing. I will watch them again. So much to learn when you’re new to this experience.
It is actually way more complicated than I was originally led to believe.

appraiser1946 | @appraiser1946 | Nov 2 8:36am

In reply to @sdduan "just want to share what I came across on internet regarding ET and treatment options. This..." + (show)

Thanks for sharing this information. It was very very interesting.

janemc | @janemc | Nov 1 7:50am

In reply to @sdduan "just want to share what I came across on internet regarding ET and treatment options. This..." + (show)

Thank you so much for proving this link, sdduan.

It's really interesting to hear high-level MPN specialists talking about ET. In just a few minutes, I learned a lot.

My favorite line: The progression of ET to myelofibrosis [MF] or acute myeloid leukemia [AML] is not seen very often.

Cheers!

sdduan | @sdduan | Oct 31 12:23pm

In reply to @sdduan "This is exactly what I heard from my two ET doctors. According to them it could..." + (show)

just want to share what I came across on internet regarding ET and treatment options. This seems to me to be very good discussions among doctors specialized in the ET disease area. The ET case discussion is in Ep 14 to EP 19. I found it very informational. https://www.targetedonc.com/expert-perspective-tumor-board/myeloproliferative-neoplasms

bshattuck138 | @bshattuck138 | Oct 23 5:27pm

In reply to @sdduan "This is exactly what I heard from my two ET doctors. According to them it could..." + (show)

It will be interesting to follow this .

sdduan | @sdduan | Oct 23 2:44pm

In reply to @bshattuck138 "Just wondering if anyone at the NIH or anyone else has been tracking data to see..." + (show)

This is exactly what I heard from my two ET doctors. According to them it could be real trend. Or it is just because more and more tests are being done to disclose this ET medical condition. Most of the time ET is symptom free.

janemc | @janemc | Oct 23 7:36am

In reply to @vivoconte "Hola, no lo he probado pero me gustaría conocer a alguien que lo esté utilizado y..." + (show)

Lots of us on this forum take HU.

Many of us have no problems with it.

Unfortunately fatigue, headaches and dry skin are "gifts" of ET itself.

They're indicators that getting our platelets under control is essential.

We are so fortunate there are options to treat our cancer. Work with your own doctor, and you will find the treatment option that's best for you.

vivoconte | @vivoconte | Oct 23 6:56am

In reply to @sdduan "I also had side effects of fatigue, itchy skin and much longer recovery time after a..." + (show)

Hola, no lo he probado pero me gustaría conocer a alguien que lo esté utilizado y nos pueda dar su experiencia.

View Translation

bshattuck138 | @bshattuck138 | Oct 22 4:07pm

Just wondering if anyone at the NIH or anyone else has been tracking data to see if there has been an uptick in blood disorders, including ET since the arrival of Covid. Are there more cases now than there were before covid? I know this is a rare disease that my wife has gotten and just looking to see if there may be a cause out there.

docoltun | @docoltun | Oct 22 12:33pm

In reply to @et1055 "I know the feeling. However, I am 72 and at high risk for heart attack, blood..." + (show)

Ask if anagrelide might be an option...it has kept my platelets managed 20+ years with no side effects.

View More View Less

Please sign in or register to post a reply.