Essential Thrombocythemia: Looking for information and support

Just joining Mayo group. I've lived with ET for over two decades, given Anagrelide when it was new (I think...Agrylin) and that manages the platelet count. At 72, greater awareness of physical changes so...I'll keep watching the posts for new news!

I am not a person of color, but I have heard this from fellow patients who are. There was a push a few years ago to try to emcourage more patients of color to participate in MPN drug trial groups, but it is a hard sell.

Your idea of jotting down notes about reactions, foods, activities with a new illness or meds is such a great idea. And I really do believe it helps when we can give those findings to our doctors. Helps keep us on task in those limited appointments.
I hear you with the dismissal we get sometimes for being a ‘women of age’. I’m saddened that you’re feeling even more-so for being a woman of color. We are all entitled to be heard! And we didn’t get to be this old by being stupid.
I hate feeling patronized or the condescending tones when having a conversation in certain settings. My primary care physician was so dismissive 4 years ago when I went in to her office 3 weeks in a row with worsening symptoms of a horrible cough, weakness, sustained fever of 102. Kept telling me I had nothing more than bronchitis. I finally told her that ‘Look, I’m 65 and have never been this sick in my life…it’s not bronchitis!”
The 3rd appointment my husband literally carried me into the office and insisted on blood work and a chest X-ray. Which I got…pneumonia and a diagnosis that afternoon of acute myeloid leukemia. I was rushed to the hospital and there for 5 weeks the first round. 8 weeks total with subsequent rounds of chemo and then 4 months in Rochester for a bone marrow transplant. I told her I was sick! 😅. What I do wish is that every medical facility could be as respectful and patient oriented as Mayo. They spoil us for anything else.
My new local PCP is great and seems to take me seriously. I hope subsequent generations of women get the respect they deserve…lord knows we’ve tried, huh? ☺️

I started writing stuff down, and it helps me spot trends. I also give anything new 10 days to resolve itself before I see a doctor. If I do feel I have to see someone, at least I have something concrete to report. Older women, especially women of color, often get blown off as hysterics or worse unless there is some visible or otherwise measureable ailment.

Hi Lori Thanks for this and your kind words. I thought it may have been the coffee I’ve run out of de caf beans and am using full roast ones - I also didn’t drink enough yesterday have made up for it today. I also thought it may be that I had a cataract op 19days ago same day I started chemo. Who knows ? I rarely get migraines but this one was more of a thunderclap. I couldn’t talk or put my head on the pillow. I only once had an experience of this when I had a dural tear. It might be all the stress build up too. The nurse did not ring back left two messages. Mondays are very busy Clinic day - that I know. Will chase them tomorrow. Have slight headache now have taken paracetamol. Will keep you updated. Jola 🙂

Wow, what an awful night for you. Let’s hope you get some good direction from the specialist nurse today because you surely don’t want a repeat of that episode.

Have you had routine headaches since starting the HU? Make sure you jot down how often this occurs, if you can think of any triggers such as food, allergies, etc., besides the possible connection to the HU. Seeing that there are others in the forum who have had experience with the headaches it doesn’t seem uncommon for that to happen. However, there can be changes made to lessen the side effects.

This comment from @ontheverge today was timely…with their comment on headache with HU.
https://connect.mayoclinic.org/comment/897146/

Good luck today! I’ll be thinking of you and fingers crossed for no headache!

Hi Guys
contd.... Didnt sleep last night due to the headache with started at 7p.m - Sunday.
Decided to run a bath at 4a,m then got dressed and lay on the bed. I managed to snooze and by 8a.m the pain had gone. I am exhausted and waiting for a call back from my specialist nurse.

People's experience with HU is really all over the map. Given that those of us in the US can often not afford newer alternatives, it would be great if more docs looked at better dosing strategies and target goals for platelets. There's a lot of blah blah about tailoring cancer care to the individual. It sounds great, but that hasn't filtered down to ET patients. Maybe using some new tricks with an old drug would help a lot of us.

No headaches here and I’m on HU 1500 mg 3x week 1000 mg other days.also Full dose aspirin daily

I will ,,, this Pain is horrendous ,,,there is no easing ,,its on the right side above eye through to back at end of tether now