Essential Thrombocythemia: Looking for information and support

That’s quite the story and you had me cringing with the BMB experience!! I’ve had 13 of those and I admit, after the first 3, the rest all were under sedation. 😅 As for your meds, I agree…if it’s works why change it! I’m so happy to hear that you’re having no issues and the meds are continuing to work! Very inspiring!

OMG, my medical plan changed so I lost my hematologist after 10 years on Anagrelide. New guy was SHOCKED, said I should definitely be switched to hydroxyurea and attempted a very lengthy, painful bone marrow biopsy which ultimately provided nothing unusual. Biopsy had never been done since the Agrylin (pre-generic anagrelide, may have been brand new) did the trick lowering platelets from 1800+ to below 400 quickly. So after five pokes (I remember asking if he'd ever done this procedure on a live person) my medication was switched awaiting results. A nightmarish 6 weeks of weekly out of control blood draw results. Took me that long to get approval for a DIFFERENT provider who basically said, if it works, why change it? So...I'm probably heading to 25+ years without symptoms from ET. I may have been an anomaly with the hydroxyurea, impatient since there hadn't been any symptoms or might have been an over enthusiastic new doctor. Thanks for asking.

Welcome to Mayo Connect @docoltun. Thank you for sharing your experience with ET and what’s been working for you to keep your platelet level managed with Anagrelide. It’s always encouraging for others with essential thrombocythemia to hear a positive story from someone who’s had this blood condition for many years and doing well!
How long were your taking Hydroxyurea before it was switched to the Anagrelide? What were your side effects?

Yep, if I don't want to risk those high platelet numbers, I take the medication daily, see the hematologist as needed (was down to annual, back to semi-annual due to age, I think). At 72, I've been on Anagrelide with the exception of a few months when provider changed after 10 successful years. The hyrea was NOT for me, lots of trouble stabilizing blood numbers across the board. New search brought me back to what had worked and still works. No symptoms.

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!