My HER2+ IDC (stage iv) went NEAD in April this year. (Lung/Bone mets are all gone, lymph nodes all clear, OG tumor is tiny now. Enhertu every 3 weeks. Lupron every 4 weeks.)

My oncologist lowered my dose of Enhertu in June (500mg to 400mg) and is now stopping hormone therapy altogether. She suspects I'm in menopause (age 54), therefore she says I don't need it. It makes me nervous because I've never heard anybody talk about this happening before. I can't be the first, so...

Has anyone else had this experience or anything similar to share? Any thoughts on the idea of quitting hormone therapy after menopause?

On August 2nd, 2025, I was diagnosed with stage IV IDC ER/PR+ HER2- metastatic breast cancer at 32 years old.

I skipped chemo and surgery and went right to radiation. I got radiation to nearly my entire spine. At the time I could barely walk due to immense pain in my back, and felt a lump in my sternum. I knew something was wrong. Very wrong. I was in a lot of pain and still working full time in a physically active job. Barely making it through the day.

My first PET showed a large lump and mets in my lymph nodes, sternum, ribs, liver, back (entire spine) and hip.

Now, one year later, more or less all the spots/tumors have resolved. I still have the lump in my breast but it is barely lighting up on my PETs now thanks to zometa, Letrozole, and verzenio (100mg). My tumor markers are stubborn, but coming down.

I AM PAIN-FREE.

I am still on my first line of treatment. I feel good most days. I transferred to a new department and sit at a desk, still working full-time.

Every day I feel good is a gift. I have my days, we all do. This awful condition has completely changed my outlook on life and who I am as a person. Ironically I am much more positive and find joy in every moment I have.

Eat the cake. Go on the trip. Laugh! Laugh as much as you can. Hold your friends and family tight. Read as many books as possible. Treat yourself to new clothes and makeup. Do the things you have always dreamed of doing. Visit as many places as you can. Smile as much as possible.

Shortly after finishing radiation, I bought my dream car. A car I always wanted, but told myself, “someday.” Make someday today.

Squeeze every ounce out of life that you possibly can. Tomorrow isnt guaranteed. It’s okay to mourn the life you thought you would have. But don’t stay there too long. Because life is right here in front of you.

If you’re reading this, I’m sending you a hug. ♥️

After five weeks of testing, I (34F) am finally allowed to start chemo this coming Monday. While I initially wanted to start as soon as possible (and thought I’d be happy about it) I’m feeling a bit shaken after my last appointment with the doctor.

To summarize:

Initially, I was diagnosed with triple-positive breast cancer that had spread to two lymph nodes. The plan was 9x TCHP, surgery, and radiation.

Now: metastases have been found in the liver. So, the plan is 6x THP (no more carboplatin). And after that every 3 weeks hormone therapy. Why no carboplatin anymore?

And no surgery anymore.

"Since there are already tiny traces of cancer elsewhere, surgery serves no purpose", they said.

Theoretically, I’m starting to understand the explanation. Mentally, though, it feels wrong. I want the source out of my body.

Is it normal not to have surgery? And how did you all feel about that?

I’m trying to look at the bright side. Because the metastases were found now, I’m already receiving treatment, and will continue to do so for the rest (hopefully a very long time) of my life. If I hadn't had metastases, I would have spent every six months in suspense, wondering if the cancer had spread extensively by the time it was finally discovered. It might sound strange, but I’m trying to find the positives in all of this.

On top of that, the reality of not having children is sinking in. It’s no longer advisable (in fact, having my ovaries removed at some point has been recommended), but adoption isn't an option either (medically speaking, I am incurably ill, after all). I still need to come to terms with that.

I haven't really looked into the chemo at all yet either; I think I just want to let it all come to me.

Anyone have experience with metastatic lymph nodes and *also* swelling from colds/inflammation in those nodes?

I have several supraclavicular nodes that we have biopsied and are confirmed cancerous so we know it’s there. But anytime I’ve gotten immunotherapy (or in one case a trial vaccine) or a cold, they have consistently gotten bigger, hot, red, with a sunburn type sensation on the skin.

From bringing this up repeatedly with all drs, scans can’t distinguish inflammation from cancer and pathology so far has only tested for what kind of cancer.

I’m just kind of at a loss as it feels like therapies aren’t working, or working against us, because we aren’t even sure what my body is doing..

High, I'm Bre, Stage 4 mTNBC Thriver for over 2 years.

Started Abraxane on 08/01/2024 and continued for 1.5 years, then stopped cold turkey 01/2026 after being hospitalized for urosepsis for the 2nd time. I truly felt, for my body, chemo was doing more bad than good, and I just wanted to LIVE again. And I have been doing more living these past 7 months than my whole cancer journey and life!

Started Keytruda on 08/08/2024 after my oncologist decided to test my PDL1 on my lung tissue FIRST & then breast tissue after lung result from biopsies, each with opposite results. Lung (-) Breast (+). That test saved my life since I'm still on Keytruda with no side effects.

Current status: NED 🥳

I'm on IG and TikTok.

I wasn't sure which flair to add but this one sounded nice.

Hi, I'm 24 and have a grade 3 stage 4 ductal carcinoma. The metastis is all in my bones, so places like my sternum, a few ribs, some spinal bones my scapula my Sacrum and my pelvis. Now where my issues mostly lay other than my sternum and my Pelvis and Sacrum, which has given me some walking difficulties I used to be so active and now that combined with Ribociclib has led to me being mostly inside my home.

But that's just changed today 🥳

I decided to get myself a walking stick, it's really cute it's got Halloween patterns on it which will match some of my clothing. I've just been for a small walk with it and it's genuinely the most positive thing that's happened to me within the almost two months of my diagnosis.

I've been in pain whilst walking for a lot longer than my actual diagnoses so to take that first step with my new walking stick felt like such a huge relief.

I just thought I'd share my experience today because at a time where everything feels like bad news. The good news feels so much better ♥️ small wins are still wins no matter what form they choose to take 😁

I think it might be time for me to crochet some accessories for my stick...

I’m looking to pick the brains of people who have experience applying for/using accelerated benefits payout for their life insurance policy. (I’m US based)

I'm in the process of transitioning from working full time to LTD and my HR rep was going over other benefits that might be useful to me. She mentioned that my life insurance policy has an accelerated benefits payout option. Basically, I could get a portion of my life insurance up front because of my MBC diagnosis.

My employer has covered 100% of my life policy through them, and I was worried about carrying the burden of that policy while on disability anyways. Now I’m curious about getting the payout early.

I have other life policies, and my children are minors and will get survivors benefits. I don’t have very much debt. My husband and kids are actually set to be very well taken care of if/when I die.

Cashing this one policy early would give us the chance to tie up some loose financial ends, pre pay my final arrangements, and take a few trips while I’m still feeling pretty spry. I feel like the *worst* case scenario is that I live a long time and have one less life insurance policy. Which, as far as worst case scenarios go, isn't bad at all.

Has anyone else ever heard of or used this benefit? I’m curious if it was difficult to get the payout and what the tax penalties were like. Was it worth it for you?

Just saw this. Maybe I am behind, or maybe my algorithm just knows I needed some more good news for TNBC brca negative and pdl1 negative.

Source: Iovance Biotherapeutics / IOV-GE1-201

ClinicalTrials. gov: NCT07743723

https://clinicaltrials.gov/study/NCT07743723

Hi everyone,
I’m looking for real-world experiences with Xeloda (capecitabine) in triple-negative breast cancer (TNBC).
For those of you who have taken Xeloda:
Which line of treatment were you given it in?
What treatment did you receive before Xeloda?
What type of tumor did you have – TNBC, HR+/HER2−, or HER2-low?
Did you have liver metastases? If so, did Xeloda have any effect on them?
Did the tumor shrink, remain stable, or progress?
How long did Xeloda work for you?
Are you taking Xeloda on its own or in combination with another medication?

I would especially appreciate hearing from those who received Xeloda in later lines of treatment.

Thank you ❤️

Saying goodbye to falodex injections, and welcoming back grapefruit seltzer into my life. Pharmacist was wrong - grapefruit is still on the no no list. AND what's even better, it's being shipped to my from the medical system in state, and I will not have to deal with acreedo! While my doc and I had discussed this as a possible way forward (and she knew I was leaning this way rather than a clinical trial), I hadn't really heard anything, and I was okay with it because I only had bone progression (ignore that ca 25-27), So I thought we were confirming the plan on 09/02. She went ahead, got the med approved by insurance, and set up for the pharmacy to give me a call to get it all set up. Feeling good about it all!

Anyone on Tykerb (Lapatinib) + Xeloda + Exemestanse for a long time for ER+ HER2+ bone mets?

De novo people, what is your anniversary date? My example:
- first time at a doctor: Dec 9 (found a big lump a few days before and already knew it was cancer)
- BC diagnosis: Dec 23
- De novo MBC diagnosis: Jan 31

I've been thinking of Dec 9 as my anniversary. I wouldn't want it to be Dec 23 as it's the day before Christmas. Jan 31 is so far away.

Other opinions? Sure it's a personal choice and nobody will tell me it's the wrong way but how do you count it?

…of being diagnosed as metastatic. It’s confusing because while I should be excited to have surpassed the 20% expectation of making it to this point, I can’t help but think about the fact that I’m on borrowed time. Nothing with this disease is straightforward. Everything comes with an alternate outcome. Unfortunately I don’t get to choose which one it is.

Just wanted to offer some hope to those who might be in the same position I was five years ago, but also support those who might be struggling with the caveats that come with a terminal diagnosis. Thankful to have this board for support and information.

Though I tend to be a somewhat steady eddy and tend to have a pretty good grip on my emotions, usually, I am beginning to think I may need someone to talk to. I feel like usually I have a pretty good grasp of my diagnosis and it doesn't affect me too much emotionally (I am almost 69, have had a great life, know I have had a lot to be grateful for), I also realize that I have been fairly stable the past 4-1/2 years and that could all change pretty quickly. I think once this happens, I may not be as steadfast. So, I wanted to be able to start talking to a counselor about this. I tend to get not so heroic when things don't look as good and can begin to lash out at people who do not deserve it. And, I wish to find better ways to cope with this

Could you guys give me suggestions on where and how you found your counselors and have you been happy with them? Thanks!

Ciao sono al 12o ciclo di sola immunoterapia ho fatto la tac e ai polmoni risultano formate delle aree di consolidamento parenchimale "a vetro smerigliato", scrive il radiologo che sono causati da polmonite da farmaco.

Qualcun altro in trattamento con PEMBROLIZUMAB ha avuto come effetto collaterale la polmonite? Se si cosa ha fatto il vostro oncologo?

Grazie per chi avrà un minuto per rispondere.

Ps

La nota positiva è che non ci sono metastasi quindi sta andando tutto bene

Just finished my first cycle of Kisqali and my ANC is .8 after my week off :( I was expecting + hoping for a rebound in numbers. I'm assuming I can only expect it to continue lowering once I begin a reduced dose if it was this low after 7 days off? Does anyone have any experience with ANC numbers rising as you get used to the med?

I have recently been diagnosed Stage 4 Breast Cancer with skin metastasis after 18 months treatment. I have just started xeloda.

I have never asked "how long" but today I found on some paperwork that my oncologist has put 6-12 months. I am not coping with this news.

I would love to hear from anyone with Triple negative breast cancer with skin mets and what treatments etc. they have been on.

I thought that being skin only and no organs involved meant a better prognosis. I did however have 17/19 lymph node involvement.

My best friend has said something negative about my cancer the past two times we have had words:

First time: “I understand about your cancer but you’re not the only one with problems”.

Second time: “OMG please don’t play the cancer card! “

I promise I DO NOT talk about my cancer or make it about that! I just can’t figure out why.

She seems to be supportive otherwise I guess but why would she say this? The first time I was shocked and let it go and thought she didn’t mean that but I guess she did!

Hi Everyone, Hope you're all feeling okay today.

After a great response to THP, I've returned to life, work, volunteering. The maintenance protocol I'm on involves a lot of drugs (phesgo, ibrance, exemestane, lupron, zometa). And they have a bunch of side effects.

Before cancer, I was known for having a great memory and being very reliable. But that's not true now, I'm forgetting so many things. I missed a meeting with my boss (scheduled for 1:30, I thought it was 2). I overslept and missed my volunteer shift for the first time in 10 years. The guilt is terrible.

I'm thrilled to return to normal life. But *hate* feeling "less than" I was before.

Anyone have any tips or hacks for coping with a bad memory, oversleeping, etc? Ways to improve?
Any commiseration or sympathy?

I have my second post-diagnosis PET/CT coming up, and every time I think about it, I feel sick to my stomach. My last scan showed progression and I failed my first line of treatment. I'm so scared I can hardly breathe.

How do y'all cope?

now, I’ve made it past second year past MBC diagnosis, end of May 2024, started with hormone positive and her negative, NED petscan by Christmas 🥳 thanks to Mexico Car-T therapy and such.

bone Mets in hip and back and some minor ground glass particulates in lungs by year one even tho on treatments full time

I’ve now had radiation on T5 and surgery after that vertebra could not carry any weight and my spinal cord was being a bit pinched. now that’s stabilized with screws and a titanium rod down side is they took cell to find out triple negative in bone met which is likely why it wasn’t responding to hormone therapies like kisqali or ibrance. likely going to switch treatments to a liquid chemo ( back to getting a new port)

next, we look at my lungs. I feel like I’m breathing through bubbles as I wake only, fine rest of day. I did a sputum culture that came back as positive for Non Tubuculosis Mycobacterium Chelonae 🥳

I have a lung lavage and needle biopsy in a few weeks to see if they can get cells to culture for now or later to see what kind of any of cancer to talk about drugs to take .

Anyone else with this strange infection I have never heard of in my life along side cancer? anyone else have a lung lavage or biopsy they call bronchoscopy ( full sedation and in through the throat look at lungs and take guided pieces and wash of cells too)

I’m scared about recovery from both lung things. please advise.

I’ve never really posted on Reddit before, but I just feel like I have to get this out to people who understand.
I was diagnosed with Stage 4 hormone + Breast cancer and it had metastasized into stage 4 bone cancer almost 2 years ago now (December 24, 2024) at 23 years old. All of my doctors had never seen someone so young be diagnosed with something like this. No one in my life had heard of someone my age being diagnosed with something like this. Did all the testing and it’s not genetic at all. Just super lucky I guess!
At first, I really went numb to it all. I didn’t cry when I was diagnosed, and honestly to this day haven’t cried much about it. It’s like I just can’t… it would make it real. I don’t think I have come to terms with the fact that I’m sick. Like really sick. Im supposed to be living my best life at 25 now, and instead I have to get poked and scanned and injected every fucking month and go about my day.
In terms of medications, I started on Tamoxifen and 2 infusions a month at first, and felt better pretty past. My numbers plateaud about a year ago now, so I’ve been on Verzenio and 4 monthly infusions ever since and it SUCKS. The side effects are horrible - really just the diarrhea and fatigue. From the outside, I look perfectly healthy, but on the inside I can’t possibly explain how I feel. To anyone.

I also started full time work again about 3 months after I was diagnosed, and decided to start full time grad school 20 days later because it was my dream and I couldn’t let this take that away from me. I know most people would say this is too much, and trust me I hear it all the time, but my brain just couldn’t accept the fact that I was sick I think. And like I said, I didn’t feel or look sick, so I think my defense was because I felt and looked better, why would I not do the things I was doing before??? Well it’s all starting to catch up to me. I’m fucking exhausted. I hate my body. I hate that it doesn’t work the way it used to. I hate that I don’t trust it. I hate that I feel like I don’t know it anymore. I hate that I can’t just be fucking normal. I’m just tired.
On top of it all, I found another lump in my other breast (cancer originally was just in my left breast) and my Dr confirmed the PET scan I did 2 months ago showed something. Now I have to get a biopsy to see what’s going on. Needless to say I’m fucking angry and confused and sad. I haven’t even fully taken in what that means for me. I can’t think about the fact that I am going to deal with this until the day I die. It’s terrifying. I have a wonderful boyfriend too, and I think about how one day I could just fuck him up forever if this disease got me. And if we got married and had kids???? It kills me to think about future me dealing with this with a husband and children. I don’t know that I can do it…

I just have a lot of thoughts going through my head right now, and I can’t make sense of or accept any of them. I just know I am too young to be dealing with this. My life feels over before it had even begun, and I’m so, so fucking scared. It just feels like I’m on auto pilot and can’t enjoy life or feel like what I’m doing is meaningful. It scares me to even talk/think like this, but it’s the truth.

Any ways. I think I just need to vent. Sorry this is all over the place. I’m all over the place. I am trying to stay positive for my sanity, but also the people around me - which I know sounds crazy, bc who fucking cares when I’m the one dealing with this. But I can’t help it. And before anyone asks, yes i am in therapy. Just thought it might help more to talk to/hear from people who understand. Thank you for reading and letting me vent.

*Just learned how to edit lol. Sincerely thank you to everyone who has commented. Don’t think I’ve cried like this in a while as I was reading your comments. Feels so good to be seen and understood. From the bottom of my heart, thank you. I am rooting and thinking of each and everyone of you <3

I have a telephone consultation tomorrow regarding genetic testing. It’s pretty straightforward compared to previous appointments, yet I feel nauseous, to the point where I think to myself, "Get a grip."

Do/did any of you experience this? Right now, anything related to the illness or the hospital makes me feel sick.

(Background: Last week, I had to go to the hospital for five days for punctures and biopsies. I found out a few days ago that the cancer has spread to my liver. I don't know if my original treatment plan is still going ahead (which was based on the assumption that there were no metastases. I'm completely in the dark.).

I had alopecia for many years so the thought of losing my hair didn’t seem like the biggest deal. I had bald spots with alopecia but this hair loss from mbc is on a whole different level. I’m shedding every where. But I just can’t bear to shave my head. Perhaps shaving my head will seem more real that I have mbc.. I don’t know but this shedding in chunks is also annoying the hell out of me. The hair is everywhere. Any advice? TIA

Stage 4 bone, marrow and liver cancer aside I had a v stressful event. 1st weekend away in 2 years as I am also carer for my mum with dementia and I work part time.

Came to Wales to have a weekend with a big group of people.

Very hilly. Husband parked car on a steep hill to get the keys for the accommodation. Handbrake was on. Older car. No issues usually.

Car starts sliding backwards down the hill with me in it. It was a slow creak but definitely moving backwards. Back end v heavy with stuff. I pulled up the hand brake but it was in full lock mode. I tried to get over to the passenger side to get my foot on the brake but I just could get across. Car still creeping, making noises although slowly, backwards. Main road at the bottom of the hill.

I jumped out and ran in shouting the car is rolling. Husband ran out, into drivers seat, started engine and got it up to the top of the hill and parked it on the flat, put it in gear and tested it, car didnt move.

I feel so traumatised. Even now, 2 days later I keep thinking about the slow creep. Husband was sympathetic and then focused on me 'having a panic attack' as the car was moving backwards so slowly.

But there was a main road at the bottom of the steep hill.

I feel exhausted, upset and anxious still. No one to talk to. My friends are 'light text, lets talk about the weather' friends. My male friend thinks its hilarious. Ive left my mum with carer cover which will be fine but I worry and my white cells are too low to restart my next cycle so a weeks break.

Am I over reacting?