← Return to Starting 17th year with ET. What's ahead?

Discussion

Starting 17th year with ET. What's ahead?

Blood Cancers & Disorders | Last Active: Apr 22 11:17am | Replies (74)
Comment receiving replies
@lynns51

I have recently been diagnosed with ET. I am currently at 601,000, but my platelets have been rising steadily for two years. There is a mutation on the CALR gene, so this won’t go away. When I hit 750,000, my doctor will prescribe Hydrea. I have had headaches and am very tired most of the time. I thought this was caused by having had COVID19 in 2020, but what I read here is it might be the ET and Hydrea will help eliminate the fatigue and headaches. Has anyone experienced this?

Jump to this post

Replies to "I have recently been diagnosed with ET. I am currently at 601,000, but my platelets have..."
Colleen Young, Connect Director | @colleenyoung | Apr 14 9:24pm

Welcome, @lynns51. I moved your question about about ET with CALR gene to this existing discussion:
- Starting 17th year with ET. What's ahead? https://connect.mayoclinic.org/discussion/starting-17th-year-with-et-whats-ahead/

I did this so you can read previous posts and connect easily with members who have walked this path before you like @nohrt4me @lynnevb @et1055 @lynnebgraham @janemc and many others.

How are you managing the fatigue and headaches?

VIEW AND REPLY
janemc | @janemc | Apr 15 7:04am

Hello, lynns51. Fatigue and headaches are the two most frequent symptoms of ET. Overproduction of platelets burns a lot of energy.

Everyone's experience is different. For me, as HU brought down my platelet count, it also gave me more energy, and relieved those headaches.

Also really helpful was my oncologist's staring me out on HU very slowly! For several months, I just took one 500mg capsule. This gave my body time to adjust to the medication, sparing me from any side effects.

With ET, you are experiencing something serious. Be kind and patient with yourself.

VIEW AND REPLY
nohrt4me | @nohrt4me | Apr 15 10:28am

Welcome to Club CALR. Me, too x 17 years.

HU did make me feel better. Less tired fewer headaches. And I've never had a clot. Ask yr doc, but I've read that CALRs are a bit less likely to clot.

Fwiw, my dad also had ET. Died in 2010 at age 82 of unrelated COPD.

Your doc follows same protocol as mine.

Tip: When you have to go on HU, ask to start on low dose, no more than 500 mg/day. Guessing your doc will do this anyway, but the lower dose gives you a chance to ease into it.

I went down to 600s pretty fast, then stalled there for a year. Dose was increased to an extra 500 mg M-W-F and I've been in 400s x 5 years now.

VIEW AND REPLY