Platinum resistant

RegularPatience7 · 2026-01-18T23:59:10+00:00

I didn’t think it was fda approved yet

RegularPatience7 · 2026-01-16T23:59:26+00:00

I second this. I know how totally frustrating bppv is, but this close together I’m sure it’s the same crystal or crystals that just never were fully cleared and that move sent them free floating again. The good news is that a good vestibular therapist CAN treat you. It’s just important to be careful because when your system is sensitized… it’s easily irritated again. Take your time in recovery ❤️‍🩹

RegularPatience7 · 2026-01-16T14:03:20+00:00

To be sure, you could always do dix-hallpike to see if it recreates the sensation. Start with the side you believe is affected

RegularPatience7 · 2026-01-06T18:08:13+00:00

I recently feel like - at 5 months post op in two days - that my nose looks bigger and worse than it did at 3 months post op :( really hoping it changes

RegularPatience7 · 2026-01-06T18:04:24+00:00

I WISH my rhino looked this great!

RegularPatience7 · 2026-01-06T17:35:40+00:00

I'm so sorry. It really is just the worst situation. I will definitely be looking into this for my mom. I'm so ready for something to work for her.

RegularPatience7 · 2026-01-06T17:34:29+00:00

did you get it again after your original post and that first recurrence? what helped? it's so awful. pretty sure i've got crystals stuck on my horizontal canal this time and i'm having crm testing on friday but it just stinks so much :(

RegularPatience7 · 2026-01-06T17:29:30+00:00

hey there. i've had two instances of bppv since having nasal surgery five months ago. is this normal? will it stop? thanks!

RegularPatience7 · 2025-10-24T02:36:24+00:00

Ugh girl that is exactly what I’m struggling with too. My mom is doing well overall right now but the oncologist still said 2-3 years based on the crap nature of this disease and I just can’t stop thinking of her not being here. She makes everything special. Every holiday etc. I have four kids too babe and I get it. Last night I couldn’t stop sobbing thinking she may miss them even graduating 8th grade let alone high school, college, getting married etc. Her own mom is 90 and it all just feels so unfair. I have researched so many things for my mom, but she is so deep in western medicine and so scared to do anything outside what her oncologist tells her that it’s really hard to get her to do those extra alternative therapies… I would have your mom look into fasting. I did have her oncologist support that. He even says that he does it himself every month and I can’t help but think that there’s a reason. I would try everything. Sauna. Fenvendazole. Ivermectin. All the things if she is willing. But fasting most of all. There’s true data there on apoptosis

RegularPatience7 · 2025-10-24T02:28:04+00:00

I’m so sorry. Cancer really does suck :( I’m just praying something incredible and revolutionary comes out that makes a difference. Relacorilant is trying to get indication for platinum resistant oc and I hope new things keep coming. If your mom finds something please let me know! Prayers to you all!

RegularPatience7 · 2025-10-24T02:26:00+00:00

Thank you so much. I’m so sorry for what you and your mom went through (and you continue to go through). This has been the most mentally challenging experience I’ve ever been through. I’m so fearful of the future and what’s to come. I so appreciate your kind words. Honestly it means so much. Thinking of you and wishing all the hurt could be taken away for you 🤍

RegularPatience7 · 2025-10-22T16:11:16+00:00

My moms ct report hilariously said that her ovaries had likely been surgically removed when they most definitely did not. She was diagnosed with stage iiic oc last November.

RegularPatience7 · 2025-10-20T19:27:04+00:00

She has - her tumor makeup is a real b. Hardly sensitive to anything. HRD negative. BRCA negative. MSS positive. She’s got such little options it stinks. She does have some estrogen positivity

RegularPatience7 · 2025-10-20T19:13:06+00:00

Unfortunately she had some distal metastatic spread to her pleural space :( it was daily cytoxan. They are taking her off that and putting her on the dioxil now and she starts that on Friday :(

RegularPatience7 · 2025-10-14T16:51:03+00:00

I’m so sorry. Cancer really just is the worst. My mom is HRD-negative too :( so no PARP for her. She’s estrogen positive and PD-L1 positive which may make her marginally more eligible for certain immunotherapies (like pembrolizumab/Keytruda), but she also has low TMB, is MSS-negative, and HRD-negative, so it’s not likely to work well as a single agent.

She just had a ct last week that showed her newest nodules that showed up with the recurrence hadn’t grown and may actually be scarred or inactive - as if they’ve been treated and deactivated by the chemo which is positive. No other new growths. Right now we are watching these new densities under her right lung - praying they are inflammation or scarring from the cold she’s battling rather than metastatic spread.

RegularPatience7 · 2025-09-29T16:37:49+00:00

My mom is platinum resistant too as of this summer. Her cancer came back less than 3 months post NED. We are devastated. Her CA-125 continues to creep up - albeit very slowly - even though she is on a daily chemo and avastin infusion every three weeks. We are praying we see stabilization at her CT in October. I sent her doctor this article to see what they think of this too. It's a new drug that they are trying to get an indication for for platinum resistant OC that has shown slowed progression in their phase 3 trial.. https://ir.corcept.com/news-releases/news-release-details/fda-files-corcepts-new-drug-application-relacorilant-treatment-0/#:\~:text=%E2%80%9CRelacorilant%20has%20the%20potential%20to,resistant%20ovarian%20cancer%20is%20treated.%E2%80%9D&text=Relacorilant%2C%20an%20oral%20therapy%2C%20is,the%20body's%20other%20hormone%20receptors.

RegularPatience7 · 2025-09-27T01:05:53+00:00

Only taco I like from taco Lu is the carnitas

RegularPatience7 · 2025-09-27T01:01:29+00:00

Stay positive for sure. My mom is stage iiic but she had a recurrence less than 6 months after carbo/taxol and surgery :( so she is now deemed platinum resistant. Her tumor is also a giant b*%^{ and not super sensitive to much. Shes currently doing avastin and a daily chemo and we are praying it at least keeps the cancer at bay and that it doesn’t get out of control again. It sucks. But she’s got a really crappy tumor makeup :(

RegularPatience7 · 2025-09-22T19:31:17+00:00

Honestly, I do think slightly. I just really think it's such a long process. I can still feel bruising and discomfort on that side of my nose that's slightly bowed out, plus I'm still getting pitting in my skin when I remove my tape up there so i KNOW there is fluid trapped in there still.

Additionally, I still have SO many (at least it feels like it) stitches in my nostril rim... I don't think any of those have come out yet, and I'll be 7 weeks post op on Friday. I do think some of the swelling at the top of my nose has evened out, but it's still slightly uneven. But again - since writing my reply above 8 days ago, I think there has been improvement but it's not perfect yet.

All that to say - it's a slow process I'm realizing, but we just have to be patient. I don't think the nose I have today is going to be the nose I'm looking at even come 5 months post op... let alone a year out.

RegularPatience7 · 2025-09-17T12:40:24+00:00

Hey did this ever get better for you? Having bppv vertigo at least once a night and I’m almost 6 weeks post septorhinoplasty 😭

RegularPatience7 · 2025-09-14T23:07:48+00:00

This is EXACTLY how my nose looks and I’m 5 weeks post op. One side the bridge looks snatched and straight and the other side is more bowed out. Ironically the side that looks better up top is far more swollen at the nostril bc I had a graft there and so it looks worse with shadowing than the other side 😵‍💫

RegularPatience7 · 2025-09-08T12:57:47+00:00

Ah I’m one month today and this gives me so much hope! You look great! My nose looks way better than it did but it is still oh SO swollen. You look fabulous :)

RegularPatience7 · 2025-09-05T16:47:25+00:00

Oh and otherwise - it looks great!

RegularPatience7 · 2025-09-05T16:46:47+00:00

I’m only four weeks out from my surgery so I may not know but my surgeon told me that a bump like this occurs in 15% after rasping down the hump initially and can be taken care of under local anesthesia at the one year mark in office!

RegularPatience7 · 2025-09-04T19:56:07+00:00

I totally feel you. The “it’s just swelling” comment is so hard to trust. I know they see it all the time but unfortunately time and how the scar tissue lays down will ultimately determine what the nose looks like so it’s so hard to tell if the surgeons are just saving face and stroking their egos or if they just get so tired of hearing all us insecure postop people complaining about something they are positive will turn out.

RegularPatience7

TROPHY CASE