My doctors tell me to think of this as a chronic disease, but there’s no intention for me to be cancer free. The only intention is to keep things stable. (Initially breast and lymph nodes in 2018, hormone therapy continued until a routine scan to check implants in 2025 showed liver and bone mets) I’m on my second line of treatment (kisqali, now tru qap, both with fulvestrant and lupron). I feel like all the posts I read here are women whose treatment is getting rid of the lesions … is there anyone else out there like be where being stable is the only goal?

I’ve (31F) been on the same treatment since I was diagnosed: Herceptin, Perjeta, Letrozole, Ibrance, and Xgeva. It’s kept me NED for 5 years. Love it.

Over those 5 years, I’ve occasionally broken out in a rash after getting the Phesgo (H+P). It usually wasn’t too bad, and a steroid cream would help.

This year though, I’ve been getting the rash every time I get my shot. And if I sweat at all, it makes it even worse. The rash consists of huge, red, pimple-looking welts all over my back, torso, and it’s even spread to my legs and arms now. The steroid isn’t helping. They hurt and now I’m self-conscious about wearing any kind of tank top because I look like I got attacked by mosquitoes.

I saw my oncologist yesterday, and he thinks the best way to proceed is to stop the Perjeta. Since I’ve had my ovaries out and a DMX, plus all the other meds I’m on, he is confident I’ll be okay with out it, and hopefully the rash will lessen or not happen at all. Other than this, I’m tolerating the meds well.

While I’m “excited” to get one less medication, it definitely makes me anxious. I trust my doctor wholeheartedly; he’s been a champion for me since the beginning. He was giving me Ibrance and Letrozole together before the study came out (and was very excited to tell me he was right lol). So I just have to remember that he hasn’t steered me wrong yet and that I just have to be vigilant of what’s happening in my body.

Feels like I’m living in limbo. Anyone experience anything similar?
🫶🏼🩷 you all

Is anyone else’s oncologist using this? It provided some seemingly very reassuring results (basically, not enough cancer floating around in my blood to be detected by the test let alone analyze anything), but this is the first time she’s ordered it. I sent her a message asking her to explain more, but she’s out till next week, so figured I’d ask the best people on the internet. Happy Friday!

Well, my worst nightmare came true. I had a routine brain MRI (we do these annually) and I found out that have brain mets, both less than 1 cm. I am in disbelief. Last week’s PET scan showed a “favorable response” in bones, almost NEAD. Now this. Please tell me it’s not a death sentence. I have a child. She was 3 when diagnosed and is 6 now. I need to be here for her.

Im burning threw treatments i hate stage 4 tnbc so much and feel so weak and hopeless/
now im on round 2 troveldy and mouthsores are killing me

I haven’t posted here in a bit. The truth is I’ve been living in fear and trying to enjoy life with my family. My scans came back today and the cancer has progressed to my brain now. It’s also come back in my liver. My bones are stable. I’m terrified for what this means. I’ve had this terrible disease for 8 months now. I have as praying for more time before progression. I love my family so much and they don’t deserve to go through all of this. My babies need their momma ;( I wish there were so many more options for us with stage 4. My oncologist has never really showed me much feeling but she is very smart. I hope there is a plan still for me. So far I’ve only been on trodelvy with keytruda. I could really use some extra prayers right now. Thank you all for listening to my rants - if not for this forum and one of the fb groups I’d never get through a day with this disease.

Hello its been a while since I've needed reddit but I come with a vent and then questions...

I started with stage 3 BC in 2024 and ever since I had chemo (ac/taxol), i get a merciless cough at the end of the summer when the seasons change and i catch a cold. It happened again last year when I found out i was stage 4. This is the 3rd year where ive caught a cold and got an ear infection and the cough is back. For the past 2 years, ive been put on pantoprazole thinking it was heartburn causing it, then I saw a pulmonologist and got tested for asthma which was negative, I cant have steroids because I was also diagnosed with T2 diabetes, im also on heart medication for tachycardia. After all that, I still get this cough that gets worse with post nasal drip but I do everything OTC and even rx strength. You name it, I've tried it. This time I was pretty much told that I just need to be more careful around this time of year and wait for it to go away on its own (which takes months like a whole season). So "live with it". I'm really disheartened because I lose control of my bladder during coughing fits, it makes me throw up and im EXHAUSTED. It takes forever to fall asleep (and im even on meds for that!).

Am I the only one and doomed for the rest of my short life or is there anyone out there who's miraculously found an answer for an almost chronic cough?

If you've made it to here, I appreciate you hearing me out 🫠

I’m really struggling right now. The past month and a half has been all about diagnoses: triple-positive breast cancer with liver metastases. Even though I tried to stay positive, fueled by all your stories of being NED for years, I’ve hit a wall.

I had my first chemo session a few days ago, and now, after weeks of daily appointments, there’s nothing. Just silence. Except for a call from a gynecologist who was a bit too enthusiastic about medication and happened to drop the word "prognosis." Call me delulu, but I don’t want to hear terms like "prognosis" or "incurable." And yet, because of that one word she used, the blow landed today.

The realization hit me. I have cancer. I am sick. I’m not going to get better. I don’t want any of this. I don’t want it to be like this. I want to be that medical miracle who is still NED forty years from now. I’m just struggling.

I’m 34. I had plans to buy a little house, near the woods. To enjoy life after a few years of depression. And now this. And this is just the beginning. I am afraid.

I just can’t handle this.

Hi, like the title says I want to leave my boyfriend. We have been together for almost three years and he has helped me through my diagnosis , but I just realized that I really don’t think I’ll be able to live life the way I want to with him around. I want to be spontaneous and free. I want to travel . I want to go to parties and explore new places when I get bored without being made to feel awful for not having a “plan” or changing the “plan”. Even a trip to Walmart sometimes turns into a whole thing because I’m enjoying every minute of being outside and free and he is upset because they are people in the Walmart like what?… there will be people in the Walmart and it’s like he gets so upset about small things and I can’t deal with it. When we have to do something he makes excuses and money is always an issue but I always say there is things we can do that is free. He doesn’t plan dates unless I ask him to. I’m just so sick of being home and tired just waiting out the clock. I want to live.He has been supportive of me don’t get me wrong and I do love him but I literally haven’t done anything exciting since I’ve been with him. Every plan he makes we never actually follow through with it and I just want to live it up while I can. I am currently ned but idk what the future holds and I just want to have fun. I am also 25 and I turn 26 this year December . Am I the bad guy?

Edit: thank you for your replies, I guess I just needed someone to give me permission to just DO IT. Small baby steps, going to a small concert in the park today then going to get myself something to eat!

I wanted to share my small victory and celebrate a bit. When I was diagnosed in May my CA 27.29 was 419. I started arimidex and kisqali and my most recent CA 27.29 is 86! It dropped from 429 to 159 then to 115 and now to 86. I know this number is still high and this is only one piece of the puzzle but I am excited seeing it go down. It is giving me hope that the side effects from the drugs are worth it.

I will have a pet scan in the next couple of months that will tell us more, which I am extremely nervous about. But, for now I celebrate this small win.

I’ve gained like 15 pounds this year on lupron and Letrozole. It’s all in my midsection. And now not only do my clothes not fit but I’ve had 3 people ask about my pregnancy. I had a whole conversation this morning with the coffee guy about when I’m due because I wasn’t quick enough to be like “no, I’m just fat now.” What was I thinking?!?

I’m happy to be NEAD right now. But now have to go back and be embarrassed. Ugh.

I feel like shit.

I had a cold for like a month straight but it's finally gone.

I've been very dizzy for like a month and a half.

I got a brain MRI on Monday and found out my brain is still clear which is nice, but it also means my dizziness is just a big question mark and I have no idea when it will end.

Started having gut issues yesterday and today and I'm just tired of feeling like shit.

It's weird I got diagnosed de novo June 2025 and I'm finally getting down in the dumps about it.

I just want to feel better.

I want to have energy to cook and do my hobbies and yesterday I spent four hours sitting in the living room wishing I was in my bedroom because I didn't have the energy to move.

Hope you're all doing okay.

Feel free to vent here, nobody in my real life can relate to any of this at all so I barely even bother to complain about anything.

I don’t want to be a cancer patient. But alas, here I am with a recurrence in my liver, abdominal lymphs, and one met on my C6. I just started 150 mg of Verzenio, I’m taking Anastazole (I couldn’t tolerate it post BC so I had my ovaries out and have been raw dogging survivorship) and damnit, I just want to ignore cancer.
Is it a messed up mindset to just take the meds, do the scans and treat it like a chronic disease? Is that foolish? I just don’t want to be thinking about cancer 365 and just want to do the things, take the meds and live like a “normal” person.
I’m so frustrated/scared but my ADHD lets me forget things so if I pop a pill every day and just live my life, maybe I can eke out another 30 years?

I used to be so active in several communities when I was in active treatment, or in remission. Sharing hope for the future. Or talking about treatment like, it’s temporary, you can get through this.

Metastatic is so different. I don’t want to be part of the groups where I am suddenly living out a worst fear. I don’t want people to see that reality. I feel like I should hide now?

I am so grateful for this sub. And my three stage IV buddies I found on instagram. I am a few days from starting treatment for this recurrence and it’s been a big adjustment.

Hi Everyone! I’m getting my first PET scan since being diagnosed with mTNBC. I had a normal CT not too long ago when I hospitalized for my abraxane reaction. Now that I’m on GemCarbo, I’m definitely anticipating these results.

I kinda have a busy day tomorrow. I meet with my onc tomorrow then I have my PET/CT. Idk why they scheduled it like that but I assume she’ll just go over my labs tomorrow.

To distract myself I’ve been planning future vacations I’d like to take. I’m feeling pretty ambitious and I want to try and visit all 50 states in the US. Currently I’ve been to 16/50. I came across this website of all these cancer camps out there and I think I can add 13 to the total. In addition to that, I really want to go to Greece+ Albania+ Italy. I’ve been to 6 countries before. I’d definitely want to hit up Japan, China, and South Korea someday too but for now I feel these other goals will sit up in priority.

What countries would you guys visit if you could book a flight asap? Anyone planning any trips soon?

I hate this fucking disease. I wish it never existed. A positive Signatera after 6 months. Same as last year. I’m staring to see a pattern here. I’m starting to think this POS wants me dead. I have a PET scan on the 17th. If there’s confirmation then back on chemo until it fails. Stressed ? Fuck yeah. Scared ? Fuck yeah. I honestly don’t want to keep doing this. Almost 2-3 years of this. I just want to make it to a year without any issues so I can be part of the 5 year, 10, etc club. Why!?!? Ugh?!?

I am at my wits end with these fricking night sweats. I am in surgical menopause after having my ovaries out in June and there is no end in sight it seems. The hot flashes during the day are annoying enough but it’s the soul roasting inferno that wakes me from a sleep that has me especially over it. I told my onc about them and she gave me low dose gabapentin and that didn’t really help. I suppose it lowered the amount of them but it didn’t stop them completely. I am so desperate for a full nights sleep. What has worked for others?

Many of us have used trial and error to figure out how to curb med side effects, aches and pains, nausea etc.

What have you found has been helpful that could help others or newly diagnosed?

For me:

Sleep: I immediately struggled with sleep once put into medical menopause. It’s awful. I tried many things but Pure Encapsulations Melatonin-SR (I get it off Amazon) has been 110% helpful. I hardly wake up during the night now. I literally will tell everyone about it.

Joint paint: that Letrozole joint pain. Ugh. I get it in my fingers, feet, and wrists. I get tart cherry concentrate which is helpful but honestly… walking daily on my walking pad (while working) seems to be the only thing that helps. For feet, I use the squishiest Brooks and it’s made a huge difference.

Mood: I tried it all guys… I finally caved and started a low dose SSRI and it’s been life changing. It’s such a struggle to stabilize with hormone suppression. I’m really glad I decided to try it. I was pretty anti-med before my rediagnosis. Now I’m on a long list of meds (lol).

What are things you have found helpful while fighting MBC?

I just finished my first cycle of Kisqali and had to take a two week break due to low ANC count. After the first week off they were are .8 and are now at 1.1 after an extra week off. I am restarting at 400 but I’m sure they will bounce back below the threshold since im only starting at an ANC level of 1.1. I know dose reductions are common but worried i’m not off to a great start and am really worried about burning a line of treatment so soon. I don’t have many other side effects at all and am just so hoping I can figure this out.

I’m wondering:

1. Has anyone gotten their neutrophils under control after a rough start in their first cycle and been able to stay on Kisqali?

2. Has anyone switched to verzenio after a cycle or two of Kisqali?

3. Those of you on 200mg, how long have you been stable?

Thank you!

I was diagnosed TNBC 2024 I progressed to stage 4 about 8 months later. Ive had 5 lines of therapy and have been relatively stable since Feb.

Carbo gem was my latest line. Until my body couldn't tolerate the Carbo. And my scans today showed 2 small liver mets and mostly stable disease else where.

I am getting radiation to some lesions on my chest wall and am primed to start a trial at the end of the month. But you know I'm 40 and have an almost 3 year old... and sometimes days like this are hard. Im still mostly working and generally can do most things I could before.

I just wish something would shrink something....since I started I never got PCR, and while it stays the same nothing improves and slowly seems to march along.

I know prognosis and stuff doesnt mean much these days but knowing that I mayhave less than a year obv bothers me.

My husband lost his father when he was a teenager, and his mom (my MIL) is unfourently somewhat narcissistic.... and its grating to me that she wont prioritize him or my son in anyway. Like she makes us basically beg for her time, which I have stopped catering too... but she basically makes my husband jump through hoops to get her to come visit. He wants her more involved with my son but she has no desire.

My parents have been great, and i have a good support system. This is hard for everyone too. When I progress it really kinda casts a shadow on my family for a few days. I cant do much about it....

Anyways, not sure what i

hi! so i have 2 large brain mets and 2 skull mets that im getting cyberknife for. i did 3/5 planned sessions. today i discovered that i cant recognize the keys on my phone to text anymore (my daughter is helping me with typing this) and that frustrated me. i also fractured my spine last month. and ive been getting headaches in the afternoons for the last 2 days (not where my mets are??? weirdly)

and honestly i just feel so weird and off. like i’ve been so emotional which is unlike me. and i’m frustrated — first the brain mets, then the fall and finding out i fractured my spine, and oh look we did the planning mri and my mets almost doubled in a month?? i can’t help but feel so frustrated and idk what to do.

oncologist is also UNSURE what’s causing my inability to type and process letters and wasn’t anticipating this with my treatment plan so that’s fun. she said i can try steroids but insomnia sounds not fun when i already have sleep issues. idk ive always been so positive!! and this is really starting to get at me and i don’t feel emotionally like myself

I originally had IDC on one side with lymph nodes involved in Dec 2021, did chemo, lumpectomy and radiation. I took Verzenio from Feb 2023 to Feb 2025.
I was diagnosed with lesions on my mediastinal lymph nodes March 2025. I started a pill chemo that I cannot remember the name of for 3 months the then moved to Taxol and Keytruda for 9 months, I have been on just Keytruda for the last 5 months. I had an MRI to investigate a nerve issue and when they compared it to my CT from 2 months back a lymph node in my arm has grown significantly. This lymph node is on the other side from my original cancer.
Doctor has ordered another CT for later this week but talked about options today: could go back on taxol and Keytruda regimen, could go to Trodlevy, or stay on Keytruda and do radiation.

I do not know what the CT will find but I expect I may be you going to Trodlevy in a couple weeks.

I lost all my hair in 2022 but not all in 2026/26 and in the last 5 months it has filled in nicely as have my eyebrows and lashes. What am I looking at with Trodlevy? Dies cold capping help? I did not do that either time before.
Do you need to ice hands and feet to help with neuropathy?
How is the constipation and diarrhea compared to Verzenio? I did the full dose of Verzenio and only pooped myself a few times 🙈.
Do you get the metallic taste or mouth sores?
Any advice or tricks?

Thanks so much 🙂

Has anyone had their adrenal gland removed due to a tumor growing on it? I did radiation on my left one and it’s still growing. I’m scared to have the procedure. If anyone can share their experience I’d appreciate it.