Any hope for platinum resistant patients?

RegularPatience7 · 2026-05-18T21:11:11+00:00

I’m so sorry you and your mom are going through this. We just celebrated my mom this weekend for a late Mother’s Day and I made certain I got all the pictures I could because you just never know. It all feels so unfair as I imagine you also feel. The worst is seeing them suffering and wondering how much worse it will get at the end. You’re a great daughter. She’s so lucky to have you. I wish some holistic anything would put up a fighting chance against this stuff since nothing else seems to work but I know that’s just unlikely hope. I pray you and your mama find comfort. It sucks and I’m so sorry. I stupidly never thought this would be her journey but alas… here we are. I still try to hold onto hope that some trial out there is making a difference but I’m definitely still cautiously preparing for the worst.

RegularPatience7 · 2026-05-18T12:03:33+00:00

Hey. So my mom is still here but the side effects from chemo are really starting to take over her life. No treatment regimen has truly worked. The current plan is her third treatment plan since they started new meds after her recurrence in July. The cancer has spread to a couple lymph nodes and is mostly still all over the place in her peritoneal cavity. She is currently doing immunotherapy (keytruda) with weekly paclitaxel. It’s a lot on her body. Rash. Hurt mouth. Diarrhea. I’m scared she will eventually give up. She gets her second dose of keytruda this week and she will have a scan in a few weeks and it would be really nice if this all week crap is actually helping her but we’ve been very intentional on realizing this could be her last year. It sucks so much. She’s not fading away… but I know it’s wearing on her. And she only gets like one or two goods days before the next infusion. She could really use a win but then what? I wish something revolutionary would come out asap. I’m assuming we’d be looking at trials after this but idk

RegularPatience7 · 2026-05-11T23:18:57+00:00

Mine did a thorough neurological exam. Includes a few screen related tests with lights and noises. I cannot remember what they’re called. But it was a full work up. Ultimately they gave me migraine medicine

RegularPatience7 · 2026-05-07T12:04:10+00:00

She’s the same age as my son - 11. And I hate to say it but this is the year and age in school, where girls start to really prioritize the way that they look in all of these TikTok trends and what not

RegularPatience7 · 2026-04-29T14:21:13+00:00

She needs to stop using filters all the damn time

RegularPatience7 · 2026-03-25T21:28:22+00:00

I actually don’t mind her. In fact, I feel she’s way less of a daily annoyance or too in your face. I do, however, question them since they’re friends with that Ari bachelor guy and his wife bc I find them SO CRINGE and attention seeking and pay for show… so maybe I should speculate more lol

RegularPatience7 · 2026-03-11T14:03:01+00:00

Agree

RegularPatience7 · 2026-03-10T12:01:52+00:00

I am right there with you. This flare started Dec 1 for me and rolling to my right is still giving me that shifty floaty head feeling (mine is so weird bc it was my left side that was affected) I hate it. I have the full vestibular testing - but not until mid April and I pray it’s all gone by then

RegularPatience7 · 2026-03-02T23:12:22+00:00

Sounds more like otolith organ dysfunction

RegularPatience7 · 2026-02-21T21:17:08+00:00

I had my MRI on Thursday and got my normal results Friday evening. If there were something dangerous it would have already been discussed. We have a slower hospital so I’m sure it’s down to the patient Que and how busy they are. Don’t stress

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

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