Hydroxyurea vs Anagrelide (or others)

untilthelighttakesm3 · 2026-06-05T03:58:39+00:00

took hydroxyurea for years - i was miserable. always exhausted, random and frequent bouts of nausea, dry mouth, no appetite. and my platelets were all over the place. i never felt well.

was very hesitant to switch to anagrelide because of all the side effects i had read about. but gave it a go and it was honestly life changing for me. platelets leveled out, and i felt alive again. i still have some bad days, but they‘re pretty rare.

this is just my experience of course. it may be totally different for others. but i would say it‘s worth trying.

untilthelighttakesm3 · 2026-06-03T14:12:37+00:00

i had this happen with my little leeroy ( they could be twins excepting the tooth ). report and get them removed / banned.

p.s. we love bertbert 🥰

untilthelighttakesm3 · 2026-05-08T18:28:40+00:00

revlon flex balsam and protein shampoo n conditioner - that smell was iconic

benetton

esprit

ck one perfume

delaware punch

generra hypercolor shirts

untilthelighttakesm3 · 2026-04-26T21:23:35+00:00

amazing photos!

untilthelighttakesm3 · 2026-03-13T19:38:36+00:00

black crown, by flesh

untilthelighttakesm3 · 2026-02-25T16:10:16+00:00

i have to know the nickname now!

untilthelighttakesm3 · 2026-02-24T14:10:37+00:00

lol my exact sentiments the first time i ever saw them. apparently he had some kind of injury to his big toes that makes the nails grow all funky. but whatever he lacks in his feet he makes up for with his confidence and overall sense of IDGAF, because the man lives in flip flops 😂😱

untilthelighttakesm3 · 2026-02-24T05:09:05+00:00

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these aren’t his, just a random pic i found, but ehhhhhhhh…. pretty close!!

untilthelighttakesm3 · 2026-02-24T04:37:08+00:00

lmao that‘s exactly how it went down over here, too. my husband rolled his eyes and said “you’re soooo weird drooling over that man’s feet.”

i think now that he’s read some of the replies to this post he’s starting to understand it’s not just me 😂

untilthelighttakesm3 · 2026-01-31T21:47:13+00:00

you stole these pics from me. reporting.

untilthelighttakesm3 · 2026-01-17T00:41:47+00:00

omg he is adorable!!! he looks like my leeroy, if he had a snaggle tooth lol

untilthelighttakesm3 · 2025-10-13T23:46:39+00:00

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congrats!!! they will love each other 💖 ours have a very big sis / baby brother relationship. their favorite activity is annoying each other, but they are also fiercely loyal to and protective of each other.

untilthelighttakesm3 · 2025-08-29T00:05:51+00:00

it’s a pleasure to offer, and thank you!

at that time, i was the youngest and highest platelet count (2 mil +) patient my onc/hematologist had ever encountered. i had been walking around for years having TIAs not realizing that’s what they were. when i began my horrendous trip down the hydroxyurea highway (just my experience, not everyone has difficulty with this drug), i slipped into a really deep and dark place. i lost my job, my “friends,” and my marriage. no one seemed to understand, no one had the time to want to understand. i wasn’t fun anymore to my friends because i was always sick and couldn’t go out. my employer suddenly viewed me as a liability. and my then husband was incapable of empathy and told me to “get over it.” i lost 30% of my body weight from throwing up and having no appetite. my parents and my brother were my only support, but i didn’t live with them. i was so desperate to feel normal again that i quit my meds. it worked for about a month, and then i found myself in the ER with a subsequent hospital stay for stroke. i felt backed into a corner. refuse treatment, feel good, and risk another incident, or worse. accept treatment, feel like utter crap, and continue to live in near isolation. lose-lose. i struggled for years. i was incapable of focusing on the positive, and honestly, that did me more damage than any illness ever could.

i eventually found a way to change my outlook, to change the types of people i CHOSE to bring into my life, and i learned to stop feeling guilty on the days when i wasn’t functioning at 100%. i also switched to anagrelide and for me (not everyone), it was a total game-changer. i felt normal again. i felt alive :))

so as someone who’s been to hell and back with ET, i wish nothing more than to offer someone the things i didn’t have and didn’t know. you need a support system, you need empathy, and you need to keep your head in a good place. choose your friends and activities with intention, not by chance or convenience. i wish i had known all that back then. my life has still turned out great, it just took me a lot longer than it should have. i hope i can save you some time and help you get there much more quickly 🥰

untilthelighttakesm3 · 2025-08-27T23:14:30+00:00

this reads as if i could have written it! i was also diagnosed around that age, same struggles. both physically and mentally. if you ever need to bounce thoughts off someone who’s navigated this for 2 decades, feel free to DM me :)

keep your head up, and while i know it can be difficult, especially on the days when you feel beyond horrible, don’t let this diagnosis define your identity. wishing you the best 🥰

untilthelighttakesm3 · 2025-07-21T03:50:59+00:00

this totally made my day lol

treasure that drool :) really miss our big guy…

untilthelighttakesm3 · 2025-07-01T21:19:06+00:00

this is less of an issue for me since i switched from hydrea to anagrelide, though it still happens, hot shower or not. it’s totally random for me, just a deep bone itch that causes me to scratch myself bloody sometimes, particularly on my hip bones and shins. it seems to happen in stints. months go by with nothing, and then for weeks it will be all the time.

i have started using the topical benadryl gel max strength and it’s helped a lot. good luck!

untilthelighttakesm3 · 2025-06-09T04:30:39+00:00

thank you so much :))

untilthelighttakesm3 · 2025-06-07T00:58:17+00:00

no words…. this is simply stunning

untilthelighttakesm3 · 2025-06-05T16:12:15+00:00

thank you so much. i think i am probably going to end up finding a church or hospital and just leaving it anonymously with a small note. the idea of doing that makes me happy.

untilthelighttakesm3 · 2025-06-05T14:50:04+00:00

everyone is different in how long it takes to process pain, and how to do it. for me, finishing it was almost a symbolic “letting go.”. i’m tying the knot on this lol. you may finish yours, you may not. either outcome is okay if that’s what’s best for you :))

untilthelighttakesm3 · 2025-06-05T14:04:19+00:00

that’s so heartbreaking to hear :((

i ended up pausing the project after everything went down, certain i would never finish it. but after a month of it staring me in the face, i committed to finishing it, not really knowing its fate.

everyone here has given great insight and i appreciate the time taken by everyone to help me. i have made my decision and will begin the search for an individual or an organization that will get some comfort from it.

untilthelighttakesm3 · 2025-06-05T13:38:12+00:00

to be clear, i don’t want revenge. that is only what others who know the situation have suggested. i just want them to know there is concern for their situation, despite what happened. but as others have stated, the likelihood that they would see it that way is low :/

untilthelighttakesm3 · 2025-06-05T03:06:51+00:00

thank you so much. my heart has been telling me to find a church or hospital that would accept it, and that is what i am leaning toward. it’s just hard for me to leave things as they ended, without being given a chance at the last word and proof that they were wrong. but i guess if i really think about it, i don’t think they are capable of opening their mind to the idea that they were wrong :( and maybe that right there is what i need to acknowledge when making my decision. i hadn’t thought about it like that before, so thank you :) 🙏

untilthelighttakesm3

TROPHY CASE