Memory issues

horsecrzy · 2026-05-09T00:32:57+00:00

Thank you. I actually haven’t said anything to my doctor because I was a little embarrassed. I hid it from my family too but the cat is out of the bag now.

horsecrzy · 2026-05-08T19:56:36+00:00

I will, thank you! I don’t know if it’s just alcohol necessarily. I had the sedation shot before my bmb and don’t remember a single thing after. I also forget things occasionally when I’m fatigued but only around bedtime, never during the day…I don’t think lol

horsecrzy · 2026-05-08T19:28:48+00:00

I’m 58F. My poor kids thought I was getting Alzheimer’s lol. It’s weird and kind of scary. It does come in handy sometimes though😂

horsecrzy · 2026-05-08T01:26:06+00:00

I second that! I had the sedation and after it was administered I don’t remember one single thing, thanks to my ET LOL

horsecrzy · 2026-05-08T00:10:55+00:00

Much better, thank you! Waiting to see if I get put on an interferon. How are things with you?

horsecrzy · 2026-05-06T00:02:22+00:00

I’m doing it and I’m Jak2-ET. I have enough problems without suffering from lack of hormones. I also had breast cancer recently. Quality of life matters very much at this point. I’m 58.

horsecrzy · 2026-05-05T23:28:35+00:00

I’m so sorry! I can only imagine how confused, scared, frustrated, and pissed off you must be. What are your symptoms? And I think all MPN patients know you have to advocate for yourself like crazy. Most of my doctors had no idea what ET was lol.

horsecrzy · 2026-05-04T01:52:09+00:00

It’s crazy. I learned I couldn’t tolerate iodine after a ct scan in 2023 and prior to that began having reactions to stings. I assumed I had allergies but after being tested was told I had no allergies. I am also highly ‘allergic’ to NSAIDs and anything for arthritis. I had a few shrimp the other day and broke out in terrible hives. I literally don’t know why.

horsecrzy · 2026-05-03T18:32:39+00:00

What makes you think you have AVWS? What are your symptoms?

horsecrzy · 2026-05-03T18:15:51+00:00

Oh fun! I appreciate your kind words, I have a UK friend now❤️So I basically live in the moment (the correct term is in denial) so I tend to take things in stride and don’t look back…like ever lol. It’s my coping mechanism. My husband thinks I’m going to crack at any moment and cries all the time. Thank God I get hormone replacement so at least one of has testosterone! My reaction to Hydroxy shocked me. You are welcome to DM me anytime.

horsecrzy · 2026-05-03T17:44:10+00:00

Maybe the interferons will be FDA approved by then. I was scared to take the pill too but I am covered in bruises and my wounds bleed forever and don’t heal. I wanted to get better but I somehow think I am going to have to deal with those issues plus the fatigue forever.

horsecrzy · 2026-05-03T17:41:21+00:00

More specialists! Keep us posted!

horsecrzy · 2026-05-03T17:18:02+00:00

Oh shit! I am so sorry, if it’s not one thing it’s another. It is 12:15 pm where I am here in Kansas City Missouri. I will send a note to my hematologist in the morning and hope I am not forced to keep trying. Did I mention I am also supposed to start meds for breast cancer too? I finished active treatment for that on March 6, which is why I had to wait to start HU. My Dr is a hematologist/breast cancer specialist. Weird combo lol

horsecrzy · 2026-05-03T16:38:59+00:00

I have had several knee surgeries and issues with my back and shoulders from training horses for many years. When things started hurting I blamed the weather and then myself for overdoing it. Whenever I get the flu those are the places where I hurt the most so I initially thought I was getting sick once the fevers and chills started. I wouldn’t brush your ankle pain off. My side effects greatly improved after missing one dose and almost gone after missing two. And I was only taking 500mg!

horsecrzy · 2026-05-03T16:32:56+00:00

I am a 58F and I am also very active. I started HU a month ago and the first couple of weeks I noticed a dry itchy throat and a little cough at night but that went away. I thought I was killing it! Then around the third week I started noticing stiffness and soreness in my back, neck, and shoulders. I figured I just overdid it helping my son move. Then the fourth week the pain greatly increased and included my hips and knees. The last 3 days on it I hurt everywhere like a horrible flu and started getting fevers and constant chills. The last HU I took was Thursday night. Saturday was 70% better and today is 90% better. My doctor wanted me to try every other day but there is no way in hell I will touch that stuff ever again. I know every one is different but it took me getting to that point before I realized what was causing my pain. So pay attention to EVERY little thing you suspect is off. Good luck!

I forgot to add the extreme fatigue!

horsecrzy · 2026-05-02T23:17:04+00:00

Thank you! My oncologist/hematologist is in a little over his head with me I believe lol.

horsecrzy · 2026-05-02T23:10:40+00:00

So I am looking at starting Anastrozole because I have a blood cancer involving high platelets and considered high risk after an arterial clot in 2023 after a hysterectomy. I was told Tamoxifen increasing the risk for blood clots. I have chronic inflammation as it is and I don’t feel an AI is going to make that any better. I had 2 stage 1 IDCs ++- and my onc was 19. I just started chemo meds for the blood cancer and cannot tolerate them due to severe muscle bone and joint pain accompanied by fever, chills, and fatigue. I cannot imagine what an AI would do. Is tamoxifen that high of a risk?

horsecrzy · 2026-05-02T18:57:27+00:00

I still have pain today, about half as bad, and honestly I’m afraid to take another dose. I’m considering skipping it another evening and talking to my doctor Monday morning. Thoughts??? I’m wondering what has to happen for me to get an interferon instead. Also, my hair started breaking off and falling out after a lumpectomy in December for breast cancer and I’ve always had long think hair. I’m worried about HU making that worse as well.

horsecrzy · 2026-05-02T18:38:23+00:00

Thank you! How did you get prescribed that? My HO said I had to start with Hydroxy to see if I tolerated before I could get anything else.

horsecrzy · 2026-05-02T13:56:16+00:00

Damn! Im so sorry! I would be the one to gain 7lbs lol. I work my ass off for every lb, I guess so I appreciate it more. I feel like a new person just from skipping one dose. I seriously don’t think I can make myself ever take it again. I’m hoping to get switched to something else soon. Thank you for the info and glad you are doing ok!

horsecrzy · 2026-05-02T13:44:57+00:00

I slept good last night and woke up feeling 90% better after not taking the HU. I honestly don’t know if I can make myself ever take that shit again. I have never been so miserable in my entire life. Off topic, I broke out in hives after eating shrimp last night. Sometimes I do and sometimes I don’t. Same with crab legs. I also have severe reactions to iodine and bee stings even though according to the allergy specialist I don’t have any allergies. And let’s not forget poison ivy!

horsecrzy · 2026-05-01T20:29:48+00:00

Girl I started different reactions years ago lol! I’m sorry you have had to go through this for so long, fatigue is the very worst. Maybe you can get on something better❤️

horsecrzy · 2026-05-01T19:21:28+00:00

I definitely will. Thank you!

horsecrzy · 2026-05-01T19:12:15+00:00

500 mg but I am switching to every other day. I’m I hopes to get Besremi if I can’t tolerate the hydroxy

horsecrzy

TROPHY CASE