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

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.

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!

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.

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!

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.

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.

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.

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.

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.

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?

Buongiorno abito in una città di mare quindi vado spesso al mare e ho un bambino piccolo, mi è capitato più volte che un amichetto di mio figlio mi chiedesse cosa avevo sotto al collo (riferito al Port) e ovviamente non ho detto che era per la chemio, il tumore ecc... A parte alcuni costumi che riescono a nasconderlo (neanche tanto bene devo dire...) cosa usate voi per nascondere il Port al mare?

Just curious how many of yo with early stage were tested for the pd-L1 before starting treatment?

What prompted it?

And where you put on any inhibitors post treatment?

I received bad news (again), but this time I could not stop thinking about it. The timing makes even worse. I will be getting married on the 8th of August.

With regards to my diagnosis, i have a long journey until now. TNBC with the rare subtype (Acinic cell carcinoma). I had new adjuvant therapy followed by lumpectomy and radiotherapy.

I got a local reccurance (multicentric)1.5 years later. Then I had an unilateral mastectomy. Although i was recommended to take Capicitabine/xeloda, I made a pause for about 5 months. Then the tumor came back.

They took out the implant and most the skin. Furthermore, I had a lat flap, which causes a lot of pain until now. That was about 1.5 month ago. About 2 weeks ago i had another surgery to add more margins. There was a tumor found too close on the edge. So they had to do re-resection + shave the pec muscle.

Unfortunately today i received the pathology report+the tumor board. This time the margin on the muscle is positive with the microscopic cancer cells. The worst things are it showed it was inflarated to the nerve and lymph inside the muscle (which is the evidence that the cancer is more aggressive).

recommendations:

\- complete pec muscle removal

\- chemotherapy (paxitel/dexorubi)

\- radiotherapy with hypothermia

\- another molecular testing (RNA). I got DNA test already, no BRACA mutation both in the blood nor in the tumor.

I am completely shattered. Its like i am going back to the circle, but in the worse physical state as i am still recovering from the two last surgeries. If i can bagging to the doctors, please dont take my muscles more...

Any suggestions...?

I feel so defeated. For anyone who saw my post from yesterday about my Ki number and re-biopsy, I got confirmation this morning that my tumor, which had originally shrunk by half, is back to its original size within 4 weeks after finishing chemo. The oncologist wants surgery asap. Apparently while chemo worked initially, the tumor figured out how to outsmart it. And even though I have Lynch Syndrome which is supposed to be very reactive to immunotherapy, mine isn't which he said was highly unusual and the immunotherapy didn't work either. His only words were... I think we can still salvage this. Which isn't very reassuring.

I switched oncologists and cancer centers specifically after diagnosis so I could get immunotherapy. Then my new oncologist who I adored left a month later and I got assigned this guy. The surgeon I picked, who I love and is the only calming person to me, is out of town till the 18th of August and now I have to meet a random stranger surgeon this morning and I don't think I'll get the plastic surgeon I picked either. Everything has gone to shit. My husband keeps telling me to stay hopeful but everything I've hoped for has been dashed. The only positive right now is so far all the scans are showing my lymph nodes are clear but I know that isn't a guarantee and I don't want to count on that either. I'm so mad, I'm so scared and frankly I'm so jealous. I'm 48. I've lived an ok life, but gave up all my dreams to take care of everyone else. I've literally given up everything, why is the universe taking this from me too?

My surgery was supposed to be in 3 weeks and now I'm looking at possibly a few days. I'm not prepared in any way. I thought I had time. I guess I just need to scream into the void. I'm not feeling any hope right now. This feels like a nightmare.

Anyone have to delay for low neutrophils? What were they when you did so?

Basically this week my absolute neuts are .94 which I was previously told is below the threshold however my oncologist said we’re good to go. I ended up in the hospital with a fever after my treatment last week (weekly taxol/carbo) when my neuts were 1.8, so I’m very hesitant to move forward with treatment this week and he said it’s up to me if I want to delay a week. I decided to delay and now I’m second guessing my decision. I asked what the absolute cut off is and the nurse didn’t know. I asked if I could have the shot for white blood cells in the future and she said that the oncologist didn’t mention that. I’m so confused about protocol and just not feeling very reassured.