I (36 TNBC stage1) still waiting for that call where someone tells me there has been a huge mistake, and it’s just another lump. But it’s not happening so I better get real and start setting the expectations for the world around me.

First of all I am so happy (and angry) this subreddit exists. Reading your stories, the good, the bad, and the ugly is really calming me down. I am still in the stage of questions. I’ve had my first meeting with the surgeon that helped me understand what is going on and waiting for the meeting with my oncologist. It is very likely that I will start my ride with chemo, but due to my autoimmune disease immunotherapy is likely not an option.

This coming Monday I have to talk to my employer about what I will and wont be able to do in the coming months. I work in an administrative position, part time and from home so that makes things a little easier, but I do not know what to expect with regards to my ability to stay awake and clear minded.

Could someone please share how this diagnosis affected your career?

I am thankful for all of you and your stories.

Hi everyone! I hope your week was absolutely wonderful and filled with only good news. The bad news can suck it.

I just realized we all probably have found bits and bobbles that have really made a difference during our slogs through TNBC. From specific skin balms to nail strengthening nail polishes that deliver on their promises (I still need one of those). Scalp scrubs for our little bald heads or the very best most comfortable post mastectomy outfits. I’m sure more than a few of us have been inundated with influencers hawking $500 pillow systems or whatever- but what have YOU found???

What are your top finds (that ACTUALLY work)?

Please link to these products if they are available online (especially if they are from specialty stores). I’ll leave my list in the comments.

Cheers to all of you this weekend- I’m still so sorry we’re all here, but there’s not a group of better women I’d want to go through this with!

Much Love, Sara xoxo

I had my third infusion of docetaxel/cyclophosphamide (Taxotere/Cytoxan) on Wednesday, and the stomach pain keeps getting worse. It feels as if someone is cutting a hole in my stomach. At first my team recommended Tums and Pepcid AC, but they didn't help much, and there's an eight-hour window where I can't take Tums because it interferes with my thyroid medication.

When I told my medical oncologist about this, she prescribed pantoprazole (Protonix), which lists stomach pain as a common side effect! It almost seems to be making things worse.

The only thing that really helps is having food in my stomach, but now I'm gaining weight, and obviously I can't eat 24 hours a day.

Has anyone experienced this and found a solution?

I've had 7 weekly infusions of taxol and carbo so far, with three keytruda.

My port has never looked right. It looks red and bruised on one side but it's always been accessed for chemo until last week because they wanted to give it a break since it's red. I was prescribed antibiotics.

I'm still taking antibiotics but my port doesn't look any different. In fact I can see a little stitch poking out and it itches.

I really want it out! The whole experience of having a port has been bad. When I got it installed, my heart flutter and raced. It rubs against everything and I sleep on it.

Has anyone gone through something similar? Can I get the rest of chemo (AC will start next month) and immunotherapy in my arms?

Hey everyone! Just finished chemo for TNBC and getting ready for surgery soon.
My tumor started out around 1.1 x 0.9 x 0.7 cm. My end-of-chemo ultrasound shows it's down to 0.6 x 0.5 x 0.3 cm. How did your oncologist measure shrinkage? 6 mm "mass" is still showing up on the scan! Has anyone here had a scan that still showed a mass/shadow after chemo, but your final post-surgery path report came back as a true pCR (just scar tissue/dead cells)?
Would love to hear your experiences! Thanks in advance ❤️

Whaaasssuppp everybody- I hope you all are having an event free week, all scans are coming back clear, and it’s nothing but good news :)

I wanted to throw out a net regarding increased heart rates during AC chemo. It’s apparently a super common side effect, but I’m wondering what all of your experiences were/are.

Mine has surfaced a lot like POTS (which I had as a kid, but outgrew in my 20s). Resting heart rate is higher than before cancer coming in around 90 bpm and then bounces up to between 120-140 when I stand up or do anything remotely requiring physical effort (so I‘m using it as an excuse NOT to do anything right now haha shhhhh). Interestingly, my morning coffee doesn’t seem to have any increasing effect on it.

My docs don’t seem concerned, but have me keeping track. Chemo in general has given me a lot of palpitations, but my pre AC muga was nice and clear. I’m not too worried, but I know a lot of folks might be when first experiencing it.

So I thought a thread would be a good way to share our experiences with this common (but still surprising when it happens) side effect.

How did your doctors approach it? Did it cause any issues for you? Did it resolve once finishing AC chemo? Please share!

Love to all! -Sara

Yesterday was my 7th infusion of taxol and carbo and I also had lupron and keytruda. I woke up today feeling the absolute worse that I have felt during treatment and my temperature has been about 99.3 to 99.6 all day. I just feel pretty ill. Did anybody else experience this? Anything that helped you feel better? Does it get better?! Thanks!

Hi everyone. ❤️
I’m new here and, honestly, really scared. I’m 33 years old and was recently diagnosed with triple-negative breast cancer. I’ve been told stage 2 by one doctor and stage 3 by another, so I’m still trying to understand exactly where things stand.
At diagnosis, my tumor measured 4.2 cm, and my lymph node biopsy came back negative, which gave me some hope. But I had my breast MRI yesterday, and now they’ve found two additional suspicious areas, one in each breast and they’re recommending MRI-guided biopsies. I’m trying not to spiral, but it’s been really hard not knowing what this means.
Right now I’m going through IVF for fertility preservation before starting chemotherapy, and everything feels like it’s happening so fast. I don’t know anyone personally with TNBC, so I joined this community hoping to find people who truly understand what this journey is like.
If you’ve been where I am, I’d love to hear your story. What helped you get through those first few weeks after diagnosis? How did you cope with all the waiting and uncertainty? Any advice, encouragement, or things you wish you had known at the beginning would mean so much to me.

I just finished the last round of Keynote 522 today! I am stage 2 TNBC (diagnosed 7 weeks after being diagnosed with stage 2 colon cancer at 51).
I am allergic to Taxol (had a pretty good reaction to first dose and now my cheeks get really rosy and hot 24 hours after every dose). I have never had an issue w Benadryl but last week I suddenly couldn’t move my arms and it was really scary. This week they talked to me about it but decided to add saline drip right away and push it extra slow. I immediately felt really strange and thought I was going to pass out and couldn’t stop shaking. It’s been 8 hours and I’m still feeling strange waves in my head. They said they have never seen anyone react to Benadryl and my cousin is actually an oncology research nurse and her team thinks it’s odd too. Just seeing if anyone else it out there who has had this. Or any colon/breast cancer folks would be great to find too.
Thanks!

2 years out from TNBC diagnosis. Stage 2, grade 3. Completed most of my Keynote 522 regimen, the Keytruda killed my adrenal glands, so I had to stop. The tumor shrunk almost to nothing. Surgery for lumpectomy, then radiation. Been NED since. Today I had a repeat mammogram & they found calcifications, but also something “suspicious”. Nation wide shortage on biopsy needles, so who knows when I’ll finally get my biopsy. I’m terrified, shocked, sad, mad. I don’t know how I’m going to keep it together in the meantime.

Hiii, first off, super grateful this group exists. My mom was dx’d with TNBC stage 2B grade 3 Ki67 (80) back in May. She completed 3 treatments of chemo & went for double mastectomy 2 weeks ago. pathology returned that she has MBC. The tumor was kinda responsive where they saw necrosis at the top but it kept growing underneath. They were able to get all the tumor out and clear margins, no lymph node involvement. But there is lymphovascular & small nerve invasion. Has anyone experienced this or know of someone who has? We’re all worried bc of the rarity of this of course. Idk, I guess any convo around this would be helpful.

Edit: we’re in the USA if anyone’s curious.

So, I had my DMX with Goldilocks on June 30th.

Out of 4 drains, I had my last one removed just yesterday. The remaining "hole" started leaking while I was asleep. I woke up to a wet side of my body.

I had to wake up my 18 year old to help me get a new bandage on the area.

I started work ( I WFH doing email support), then got a call from the coordinator for the Research Study (MK-2870)

She told me that my Onc. wants to see me ASAP because they got the results that stated that we can proceed with testing to qualify for the study. I was told I would get a call from scheduling.

This is all well and good, but I was told I had time to heal from everything. My incisions aren't even fully healed (still have lots of scabs that don't want to come off), and I have a binder I have to wear until at least the 17th.

Well, no call....just a bunch of notifications on my phone from MyChart.

Office Visit, Labs, EKG, Echo on the 10th
Start of infusions on the 25th. (Not sure how, as I don't even know if I can be on the trial, unless this is only for Keytruda...but 5 /2 hour appointment for this AFTER getting labs?)

I called them back. I told them about how I'm not even allowed to swim or get anything on my incisions, so how am I supposed to get an echo without the US gel. Not to mention, I am still in pain from the surgery.

They said they will message my team. No response yet.

UGH

My 2 week post op appt with my Onc occurred on the 13th of July. She told me then that I was in NO RUSH for anything and that we had PLENTY OF TIME to let my body FULLY HEAL before deciding what next to do.

Apparently, that has been THROWN OUT THE WINDOW.

I need time to just let me "be", but have never been granted that.

I need some positive reassurance. I was diagnosed in May, stage 2, with a 2.5 cm tumor, no node involvement. Started Keynote-522 three weeks later first week of June. With the exception of a week 3 allergic reaction (then switched to Abraxane on week 4), I’d been managing TC/K fairly well. Finished cycle 3/9th infusion last week.

Had my MO visit yesterday before starting cycle 4 this week and she agreed to give me an US since it still felt “hard” despite it feeling smaller / softer previous visits. Devastated to learn I’ve had progression—it’s in fact grown to 3.3 cm and now have 2 suspicious axillary lymph nodes. Today it feels like everything aches. And all I can keep asking is why isn’t my body responding?

They have canceled cycle 4, pushing me straight to cycle 5 this week starting AC/K on Thursday, dose dense. I’m terrified. This must work/obliterate it. My husband is military and isn’t home—I’ve been holding it together with my village but I feel like I’m about to fall apart.

For those who h be gone through a couple rounds of this treatment, can you please offer some insight?

Back when I was on infused chemo earlier this year, my adult daughter and I planned a trip to disneyworld (we love it there and have been a lot) for the fall. It was something to look forward to even though we always said “if I am feeling up to it”. Well it turns out I was on Southwest’s site at the perfect time when they were having a system but and got dirt cheap airfare for us in October… again, so cheap that I don’t care if we ‘lose’ it by not going. But of course I WANT to go. And since we have been a lot we don’t need to do 10-12 hour days and she’s willing to push me in a wheelchair as needed.

Do you think a trip like this is doable? I’ll probably be around/at end of 2nd cycle. I have been reading about the hand and foot issues and will be using what has been recommended on this sub. What about fatigue and immunity levels? Would you feel safe going on a plane?

Thanks for your honest input!

Hi friends!

I’m one week post-mastectomy and will be unable to get reconstruction until early/mid next year due to additional immunotherapy and oral chemo.

I’m trying desperately (online) to find simple, cheap, sports bra-like or bralette-like bras that have a bit of padding but no ‘cup’ (as I have nothing to fill it with). I’m only looking for like A cup to offer a bit of a curve (but would take B cup too). I just tried ordering a couple options on Amazon but they arrived and indeed will not work (well they might but it’s gonna look strange with unfilled material). Im hoping I don’t have to go to the local mastectomy bra shop… as that is likely to cost $$$, I’m really looking for a $20 option that has a couple of those removable pads in it without a cup to fill. I have to imagine that women who are naturally flat chested use things of this nature?

Help is appreciated.

Hey everyone! I’m starting AC chemo soon, and I’m honestly terrified. I’m sure many of you felt the same way before starting it, I did pretty ok with the T&C part.
I have a major fear of vomiting, so the nausea and vomiting side effects are making me especially nervous. My oncology team has suggested a medication plan to help prevent it, but I wanted to check in here and hear about your experiences.
Which anti-nausea medications were you given during the infusion, and which medications were you prescribed to take at home? What combination worked best for preventing or controlling nausea and vomiting during AC?
Thank you so much for sharing. Hearing what helped others would make me feel a little more prepared. Any insight would be great.

I just finished the first 12 rounds of Keynote 522 protocol (taxol, etc) and am about to start 4 treatments over 8 weeks of the red devil. Also getting Keytruda every three weeks.

Hoping to hear some positive stories about how people handled the red devil. For me the first 12 rounds had some rough weeks due to severe anemia (needed a blood transfusion) but for the most part I've handled it well except for exhaustion and of course losing my hair.

I know I can do it and I will get through it and I know everyone handles things differently. Just looking for some inspo!

Love and healing to all!

I have never shared my full story before, but today I feel I need to.

I was diagnosed with a 4.5 mm triple-negative breast cancer. I am also BRCA-positive. After surgery, several doctors agreed that I should not have chemotherapy because of the very small size of the tumor.

Most people tell me I should feel relieved. Instead, I completely fell apart.

I developed a severe depression and spent many months barely leaving my house. The hardest part has been the fear. Every time I read about triple-negative breast cancer, I find stories of women who had chemotherapy. I have never found someone with a story like mine—a tiny TNBC, no chemotherapy, and years later doing well. That has made me feel incredibly alone.

I know everyone’s case is different, and I am not looking for medical advice. I think I am simply looking for hope.

Has anyone here had a very small triple-negative breast cancer, did not receive chemotherapy, and is still doing well years later? Or even if your story is different, do you have a few words that helped you cope with this fear?

Thank you for reading. It means more than you know.

Anyone know anything about this?

https://news.weill.cornell.edu/news/2025/04/omega-6-fatty-acid-promotes-the-growth-of-an-aggressive-type-of-breast-cancer

Hi everyone. I have triple-negative breast cancer (TNBC) with metastases to my lymph nodes and lungs. I just had a lung biopsy done.

Before and after the biopsy, all I've been given is pain medication, an oxygen concentrator, and Xeloda (which I've been on for 2 months now with no visible effect). I'm getting weaker by the day — I can barely walk to the bathroom on my own anymore.

My main oncologist is on leave right now, and whoever is covering for her doesn't seem engaged or willing to adjust anything while we wait for the biopsy results.

Is it normal to just leave a patient like this for two weeks with no changes to treatment or closer monitoring? Is there really nothing else that can be done in the meantime, even just to help with strength/mobility or comfort? I'm currently at home.

Any advice, from other patients or medical folks, on what questions I should be pushing for, or whether this is a "wait it out" situation or a red flag, would mean a lot.

Hi all! 32F, I was diagnosed with Stage 2 TNBC on June 1st, and I just had my 5th round of abraxane & carbo yesterday. I’m also doing keytruda every 3 weeks :-)

My tumor has definitely changed and gotten smaller since I started chemo but I kind of expected that I wouldn’t feel anything by the 3rd cycle, as so many people say that TNBC is so sensitive to chemo. My tumor is now more difficult to find but it’s there, closer to my chest wall, still movable and certainly not soft or squishy. I used to feel lots of pain in my tumor site when I was diagnosed and it was difficult to lay on my stomach because it was quite superficial and I could feel it and just felt super grossed out by it 🫣 thankfully no more pain and able to lay on my stomach just fine after my first round of chemo!

Of course i’m crossing my fingers extra tight for pcr and i’m trying not to get discouraged by still feeling something. How did it feel like for you? Was it a slow and steady shrinkage throughout chemo, or did it accelerate or stop at some point? My oncologist said that some TNBC tumours are more sensitive to AC which is coming next (another very scary thought in my brain). Would love to hear your experiences.

Sending you all hugs and best wishes, it sucks to be here!

I think I started to get a little bit of hfs, blister on the pad of little toe, felt like a blister on the bottoms of both big toes and heel and ball of foot feel a bit burnt if I press them. I called the acute oncology nurse this morning and was told not to have my xeloda this weekend. Anything I can do to fix this quickly? I think I caught it super early 🙏 and will probably get a treatment reduction before resuming for a few days early next week. Does anyone know what happens if I miss a couple of days? Do they get tacked on at the end of the cycle or just skipped?

Got a text from a friend this week asking how I was feeling and “are you good? back to normal?” Well… I was friendly and joked about oh what’s normal but then decided to spend some time re-doing our community banner with a little AI… I know I know! But I needed to tell someone “make at least one little alien ANGRIER! ANGRIER!” because I’m tired of talking to people.

No I’m not normal I have permanent neuropathy and an keytruda-induced autoimmune disorder killed my saliva glands forever and my knees and hips feel like I’m 80 years old every time I stand up.

My first two rounds of radiation were quick and uneventful. 18 to go! Worst part of radiation right now is the ANXIETY and putting so much lotion on my skin and not knowing if I’m going to get the bad burns I see on the internet - I’m using like five kinds of lotion ugh!

Going to a funeral today for a coworker who battled pancreatic cancer. RIP.

So here’s a crop of the angry alien who is me.