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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nohrt4me | @nohrt4me | Jul 16 7:21am

In reply to @jola13 "Its taken a year to halve my number’s had to postpone surgery about to find out..." + (show)

Hoping things will get sorted for you soon!

chimo | @chimo | Jul 15 5:43am

In reply to @jola13 "Its taken a year to halve my number’s had to postpone surgery about to find out..." + (show)

How high were your numbers initially?
Good luck with your surgery. Hope it goes well for you!

mamsgirl1998 | @mamsgirl1998 | Jul 15 2:05am

In reply to @chimo "I’m a bit stressed. So far so good. I’m anxious for the lab results to see..." + (show)

I was stressed as well. Once I started the medicine and saw it was working, I felt better.

jola13 | @jola13 | Jul 14 3:18pm

In reply to @chimo "I’m a bit stressed. So far so good. I’m anxious for the lab results to see..." + (show)

Its taken a year to halve my number’s had to postpone surgery about to find out if i can go aheadxxx

chimo | @chimo | Jul 14 1:30pm

In reply to @mamsgirl1998 "I am 51 and have been taking Hydrea and baby ASA daily for 5 months. I..." + (show)

I’m a bit stressed. So far so good. I’m anxious for the lab results to see if they will come down. I must be patient for a few more weeks.
It’s been encouraging to hear how everyone has done. Helps my comfort level. Thanks

chimo | @chimo | Jul 14 1:25pm

In reply to @biddypoppop "I am very similar to you" + (show)

Good for you! Double blessed! The pill is working and no side effects! Ride on!

biddypoppop | @biddypoppop | Jul 14 8:48am

In reply to @gmacookie "I was diagnosed with ET in 2014. I have been on 500 mg Hydroxyurea every day..." + (show)

I am very similar to you

chimo | @chimo | Jul 13 6:54pm

In reply to @jroyer "I started a little over a year ago w/500 mg/day 6 days/week. I have hot flashes..." + (show)

Thank you for sharing your experience with Hydroxyurea. The more we know, the better!

jroyer | @jroyer | Jul 13 3:22pm

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

I started a little over a year ago w/500 mg/day 6 days/week. I have hot flashes again 😬 but they are few and far between (I’m 72 and thought I was done w/that—but guess not). I also have a strange itching sensation at my elbow / upper forearm. I use rubbing alcohol to reduce the itch and sometimes an itch cream….but the alcohol actually works best. Sometimes I’ll get a headache…and I’m not sure any of these are drug related — but easy to blame!

mamsgirl1998 | @mamsgirl1998 | Jul 13 11:52am

I am 51 and have been taking Hydrea and baby ASA daily for 5 months. I have ET and no side effects my platelets were over 1 million and now at 389,000. I was scared of Hydrea but it has helped.

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