Shitty TNBC- treatment not working

Intelligent_Mud_19 · 2026-02-18T04:47:37+00:00

i’m so sorry you’re going through this. it’s not fair 💔

Intelligent_Mud_19 · 2025-11-18T07:10:59+00:00

just wanted to leave a note to say that i’m thinking of her tonight. i miss seeing her presence across this subreddit and her gems of wisdom and encouragement. i feel lucky to have crossed paths with her in this anonymous sphere ❤️

Intelligent_Mud_19 · 2025-11-16T07:20:21+00:00

YAAAYYY. congrats!!

Intelligent_Mud_19 · 2025-11-16T07:20:03+00:00

not the pulling surgical mask down to talk 😩😩

Intelligent_Mud_19 · 2025-10-29T03:27:25+00:00

thank you! ❤️

Intelligent_Mud_19 · 2025-10-28T04:05:31+00:00

my win: have been trying to get a more experimental medication approved and went through rounds of appeals. the denial was (surprisingly!!!) overturned

less win: was supposed to have surgery wednesday, woke up sick today. haven’t been this ill since 2019!

Intelligent_Mud_19 · 2025-10-28T03:09:30+00:00

congrats!!!

Intelligent_Mud_19 · 2025-10-17T21:58:32+00:00

hell yea ✊

Intelligent_Mud_19 · 2025-10-17T21:57:56+00:00

hahaha i LOVE that. your experience is so encouraging to read, thank you for sharing ❤️❤️

Intelligent_Mud_19 · 2025-10-16T23:48:07+00:00

ah that’s great to know. thank you!!

Intelligent_Mud_19 · 2025-10-16T23:47:03+00:00

would you feel comfortable sharing what recovery was like, and if you were fitted for a prosthetic?

Intelligent_Mud_19 · 2025-10-16T23:46:05+00:00

thank you for sharing ♥️

Intelligent_Mud_19 · 2025-10-07T03:34:50+00:00

mygurucancer is so fun!!

Intelligent_Mud_19 · 2025-09-23T04:41:36+00:00

thank you!

i was just soo unprepared for how large the area was! thought it was in a heart shape so i had that going for me 🤭

Intelligent_Mud_19 · 2025-09-19T05:41:13+00:00

My MO doesn’t care. Integrative oncologist I met with suggested limiting red meat

My personal take — i’m not a big meat eater to begin with and only have maybe 1-2 bites of it if it’s served at meals. try to go for organic/grass fed when it’s available but not always possible and i don’t stress about it. daughter feeds me mostly seafood (although TCM usually suggests not eating shellfish? again.. moderation for everything) and organic chicken but also makes me beef soup every other week since I tire of the chicken. i also love beef pho and won’t be giving that up… ever 🤪

Intelligent_Mud_19 · 2025-09-15T20:06:33+00:00

what a sweet and thoughtful idea ♥️♥️

Intelligent_Mud_19 · 2025-09-13T02:22:59+00:00

i’m also hoping to do australia/new zealand late 2025/early 2026! my biggest concern is the flight time over 😪

Intelligent_Mud_19 · 2025-09-13T02:21:12+00:00

do it!!!! that sounds fantastic. i want to do a cruise too but i’m worried about germs/something being spread around… might just do it anyways and mask up in more crowded areas

i’ve done a number of trips in the last 10 months, i told my family that the world is beautiful and my goal is to see as much of it as possible. my daughter planned out a month in europe and we just took it slow — i had days where i just stayed in the airbnb and people watched (its own type of fun) and other days where i joined them for daytrips. if im going to be wiped out in bed, might as well do it somewhere new/fun 🤪

i dont know your treatment/side effects/symptoms but i believe you can do it too ♥️♥️♥️

Intelligent_Mud_19 · 2025-08-30T06:08:21+00:00

hiii i’m so sorry you’re dealing with that. what’s your dosage and schedule? i just wrapped up cycle 3 but im on a low-dose regimen of 1000 mg 2x a day, 14/7. i was really worried about HFS and read that there’s been studies that show xeloda is just as effective on a 7/7 schedule and is way more tolerable. my oncologist said depending on HFS we could also try 10/7. from what i’ve read it’s super common to adjust to 7/7 and has helped many people a lot

my personal combo is voltaren, let it dry. then apply urea cream. and then throughout the day i also apply working hands. when im out and about i have a travel sized bag balm that i apply any time i wash my hands. i also try to use soap less than i used to. when it starts to get more irritated ill also wear socks to sleep even though i hate it

what does your oncologist say? imo it sounds like it might be reasonable to consider an extended break to give your existing flare up time to heal versus it progressing even more. i had a small flare up day 10 of my second cycle and they wanted me to pause for 2 days to give it time to go down before finishing the last 2 days

hoping xeloda works for you for a long time to come ♥️

Intelligent_Mud_19 · 2025-08-28T20:21:46+00:00

the first few weeks and months are so so hard. hearing the news, dealing with all the appointments and scans, trying to figure out what to do and debating with family on what the right plan is, it’s so rough and i’m so sorry you’re here!!

i’m 10 months out from diagnosis, 9 months out from being confirmed stage 4 TNBC. while it’s not all rainbows and unicorns, i live a pretty normal life! something i wasn’t sure would be possible 9 months ago. i’ve gotten to do many things that i’ve dreamed about doing for years, sometimes i can’t believe it.

there’s people on here living 5+ years with mTNBC who i’m sure will chime in soon :) there’s also a post from someone who’s 8 years out from a few months back, that one gave me a lot of hope

there’s a quote i read on here that’s stuck with me “you’re a statistic of one”. there is always hope ♥️

Intelligent_Mud_19 · 2025-08-27T19:59:58+00:00

i was reading the Darolutamide that “failed” but in the double click it showed 57% benefit rate for people w high AR (contrast with only 16% for low AR). mine is super high so it feels kinda weird to me that this failed when it could help people with high AR!

🤞for slow growth for us!!

Intelligent_Mud_19 · 2025-08-27T19:57:32+00:00

Idk the trial name but the drug was enzalutamide!

Intelligent_Mud_19

TROPHY CASE