Essential Thrombocythemia: Looking for information and support

Not to be Nellie Negative, but ET is only an "inconvenience" if a) you are being treated and monitored by a competent hematologist, b) you follow advice and the treatment works without side effects, and c) you develop no co-morbidities.

Thrilled for those who feel great. But that isn't everyone's story, especially for those who have med side effects, more severe fatigue or frequent migraines, enlarged spleen, or co- morbidities. No one should feel they're a slacker if they need to slow down a bit.

I'm 70, CALR+ x 15 years, well-controlled on meds x 6 years. Looking at mitral valve repair, severe scoliosis. I feel pretty good, but I have to pace myself.

Welcome, @as86. when getting a new diagnosis, it can be hard to even know what questions to ask. You've certainly come to the right place to find a supportive community. To get you started, I moved your post to thsi existing discussion:
- Essential Thrombocythemia: Looking for information and support
https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
I did this so you can read previous comments and connect with helpful and kind members like @nohrt4me @1995victoria @nyjean @preacherswife1977 to name just a few.

As you have more questions, you can use the group search to find more discussions related to ET : https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=Essential%20thrombocythemia&index=discussions

Have you been referred to a hematologist?

Hi- I've just been diagnosed with ET. I'm 60 years old, feel great and the journey started with a routine CBC. Not sure what I need right now other than a supportive community. Would love to hear from anyone who can offer that.

I've been flying frequently but trying to keep flight time under 5 hours (so connecting flights mostly). Told to get up and walk around as much as possible, stay hydrated, put meds in carry-on, compression socks (but I don't wear them--too confining). I am 72 yo. "YOLO" (you only live once -- so live your best life and try not to let this inconveinient disorder get in your way!). With Aloha, jd

At 73, I've been traveling world wide since ET diagnosis some 20 years ago...I do wear compression stockings when flying long distances (anything over 2.5 hours). Stay hydrated, walk around. I'll be diving in Belize in August, then hope to hike with my daughter in Panama!

That is very encouraging ❤️
Thank you

I don't think anyone is telling people not to travel, just to take their meds and, if they're are over 60, have JAK2, and or a history of clots, to wear compression hose and stay hydrated.

Best wishes for your travels!

No travel problems here. We fly extensively every year, even since I was diagnosed, ET w/JAK2.

From Michigan, I’ve flown all over the US, and to Alaska, Africa/Tanzania & Zanzibar, all over Europe (Poland, France, Italy, Spain, Portugal) - get the idea?

This fall we’re going to meetings in Wash DC, Vegas, then vacation in Italy and Slovenia.

What we have is an inconvenience. Always carry any meds and necessary supplements in a carry-on bag. Don’t let it stop you from living your life!

I’m leaving for Europe in July. My platelets are 600 and I take 2 aspirin a day. My doctor wan me to go on hydro,, but I am hesitant to do so. As far as flying, she told me to wear compression socks, and stay hydrated. I have taken a few 3 hour flights and haven’t had an issue.

I'm CALR, too. Been on HU for 6 years and bloodwork very stable in 400s once they got the right dose.

I think there is a tendency for docs to say "no" rather than "I don't know" when you ask if ET affects or causes other ailments.

It might help to get a second opinion, as managing two chronic illnesses puts a lot on your plate. But remember that ET-CALR is a relatively new discovery, and how it's different from the JAK2 "flavor" isn't well understood.

I can say that my glucose levels often run high on my quarterly blood counts. When I pointed this out to the GP, she ordered A1C tests at intervals, and they are always well within limits.

I also developed an asymptomatic goiter, what the dermatologist calls erythromelalgia (so?) and rosacea (periodic burning and flushing of hands, face and feet), itching and constipation. All of these things cropped about the same time as the ET diagnosis or after starting HU. All are nuisances, but can be irritating when they flare up. Docs like to blame menopause and age (I'm a 70 yo female). I wonder if they are related. I try to stay informed, but I don't expect to have answers in this lifetime.

Hoping you can keep the Type 2 managed thru diet and not feel too deprived. My husband struggles with his at times.