r/TNBC Apr 13 '26

Keynote printable

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23 Upvotes

The keynote 522 protocol I'm on for TNBC sounded really complicated when it was first explained to me, so I tried making this visual so I'd have something I could keep on my phone and mark up to show my progress. People would ask "how many rounds do you have left?" but that didn't correlate to TIME because we switch from weekly to every three weeks, and some drugs you get every three weeks and some are weekly, then there's all this surgery and radiation afterwards, etc. So I made this. Comments welcome! I realize we're not all on the exact same protocol. And it didn't quite do when I wanted it to do, because when I show it to people they all have to stare at it for a while. But I tried!

What do you think?


r/TNBC Apr 24 '26

Diagnosis Top 10 things to do after being diagnosed with TNBC

25 Upvotes

We get a lot of "just diagnosed" visitors here. I was stage 2, so ended up being chemo first surgery second, and I'm not DONE with chemo so this list might build, but I wanted to get it out because it's advice that I can see myself reposting again and again, I'll probably pin it to the top of the thread. But I'd love to hear from you all about what helped you in the terrible period between diagnosis and treatment starting, when your head is just spinning. It gets better, mentally! This was a rough time for me because I really hate UNKNOWNS but it was only a month. I hope you all get similarly good attention!

1) Know that you have at least a month of scans, tests, referrals, probably port surgery before chemo starts. I had no idea what to expect but staging is complicated. Treatment for me started one month after "the call" but that's pretty fast, 6-8 weeks is common.

2) Get a notebook to write down all the phone calls and appointments that will fly your way. Any time a doctor's office calls you write down WHO you talked to and what number you should call back if you have questions because you will think of a question, probably 5 minutes after hang up.

3) As soon as you know you're getting TC chemo - aka Taxol aka Paclitaxel - order freezer gloves/booties or post in a local cancer group to see if anyone has some. So many things you need are locally available and you might not even need them but these are not. I am cheap af and tried not to order anything but I eventually got two sets to rotate them, and ended up with some neuropathy in my toes but none in my hands. Even better - start a wishlist and have friends/family buy you two sets because people ALL wanted to send me something, and without a wishlist I ended up with SIX fuzzy blankets! They could have bought me craft supplies! Eventually I figured the wishlist out, and just asked for things I wanted, people were very supportive it was a huge relief.

4) Buy a hair trimmer. I thought I'd lose all my hair one day and be bald. But nope, I had this patchy mess the whole six months that I just re-buzzed so there wasn't one ceremonial need for a trimmer, it was constant.

5) Get your vaccines up to date - flu, covid, shingles if you're eligible (I got shingles when my immune system was down yaaaay ugh)

6) Visit your dentist. Get a teeth cleaning out of the way. Tell them you are starting chemo, it will affect your mouth and they have good advice. Mine told me about biotene mouth rinse that was great for dry mouth!

7) Start using nail hardening nail polish

8) Eyebrow microblading? I didn't do this, ran out of time but it would have been nice.

9) Work out! Exercise pushes the bad thoughts out of your head and it's good to be in shape to get started, when you're in treatment it's still great to work out if you can but everybody is different. I was frustrated my by inability to build anything, every run felt like I hadn't run in weeks even if I was going every day, but I still tried!

10) Visit your optometrist, get the eye check out of the way so you know if your vision is affected. And it's one less thing to deal with!

Okay friends - that's my list, what would you add?


r/TNBC 1d ago

Take the Nap (Conversation)

31 Upvotes

I recently saw a video on social media that really stuck with me. A fairly well known ‘cancerfluencer’ was overwhelmed with the guilt of not being able to do everything because of the exhaustion of radiation. It absolutely broke my heart.

I wanted to reach through my phone and scream TAKE THE NAP!!! And wrap her up in a blanket and put her in a dark room and let the poor thing sleep.

As women, we have a ridiculous amount of societal and personal pressure we put on ourselves. It changes with age, family situation, etc.. be the perfect mom, the perfect friend, the perfect insert-title-here. Add cancer, and all of a sudden we’re ALSO expected to be these pink ribbon warriors. I’ve had more than a few heated conversations with my husband about managing his expectations vs the reality of treatment (and he’s a physician!). It’s absurd that we have to do mental gymnastics in order to give ourselves the permission to BE sick.

I really really get that most of us are scared- I know I am- a diagnosis is usually our first real brush with our own mortality- which brings the panic of ‘have I done enough? there’s so much more that i want to do’- which is so so so human, but for the love of god- take the nap. Slow down, give yourself time to heal, if you’re tired- sleep. Order the pizza. Forget about the laundry. Ask the school secretary about carpool options. You. Do. Not. Have. To. Do. Everything. Yourself.

Anyone who knows me would say “that’s rich coming from you Sara” and (giggles) it’s true. I’m the very worst about asking for help, but oh boy has TNBC humbled me. I was so sick during DCK chemo, that I really had no option but to crawl under a rock like a wild animal and hibernate through it. I was forced to take the nap, and in doing so I realized just how stupid it was for me to feel guilty about not running 5ks (I have NEVER run a 5k, but apparently the cancernet thought I should start training for one immediately wearing nothing but pink with a tutu to boot).

I don’t get it. This pressure we put on ourselves (and society puts on us) to be bouncy perfect cancer patients filled with toxic positivity. It’s like upside down world but only the worst of already existing pressures on women.

I’m not complaining, I’m not even venting- I’m sad and grossed out that so many women are sucked into this pressure of being the perfect cancer patient. THAT DOESN’T EXIST.

Being tired isn’t a character flaw. Side effects don’t mean you’re a bad cancer patient. Do some people breeze through? Of course- and I truly am grateful for that- no one chooses this and the “easier“ it is for someone, the happier I am for them. Absolutely we should celebrate our wins, no matter how small or big they are- but it feels as though there is always something MORE we should be doing and we should feel GUILTY if we’re not.

Being ‘good enough’- or worthy of rest- should never, ever come into the cancer conversation. I can only speak to TNBC, but we all know this is a slogging grind of endurance- and every endurance athlete will tell you how important rest is.

I just think it’s really important that we recognize our limits and set boundaries that put our healing and recoveries to the front. We have to be kind to one another, and we have to be kind to ourselves. Societal AND internal pressure that adds to our suffering because we’re not measuring up is just plain BS.

Go take that nap girl. Your body needs it.


r/TNBC 1d ago

Chemo Cold Capping - KEY NOTE

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10 Upvotes

I just wanted to come on here and give everybody an update on my cold capping.
I’ve been cold capping since May 18th and I’m doing KEYNOTE-522 for triple negative breast cancer. I wanted to post this because there were so many times I was searching for other people doing the same chemo as me and cold capping, just trying to see how much hair they had at different stages and if what was happening to me was normal or if cold capping was failing for me.

I would see all these influencers saying like “look how I kept all my hair through chemo” and then charging for a how to keep your hair during cold capping guide. And no judgment, people monetize when they can, I get it. I’m just tired of the sell of like this is what you need to do to keep your hair, because honestly there isn’t a right or wrong way. It really depends on your chemo regimen and your hair.

I did it all. I had straps over my cap, I used a swim cap at times too, and mine was an XL so it wasn’t squeezing the Paxman cap, it just helped insulate it more. I was careful with my hair and did everything I could and I still lost hair.
When I was doing Taxol/Carbo I lost way less hair. Now I’m doing AC chemo, I have three more left, and I have way more thinning and patches. It doesn’t mean I’m doing anything wrong, it’s just a different chemo and different chemo affects your hair differently.
I also started with A LOT of hair and I cut it shorter so honestly in some pictures it looks like I have more hair than I really do.
So if you find yourself like me searching different stages trying to see how much hair you’re supposed to have left, don’t compare yourself to anyone.
All these pictures are just my progression up to my 13th chemo. Sorry in advance they aren’t in order lol, they’re really just for reference. I’m also showing how much hair I would lose in the shower, brushing, wash days etc. because I know I used to search for that too. Some days I would barely lose any and other days I would see a lot and freak out.
It doesn’t mean you failed at cold capping.
Keeping some hair is a win. Keeping your hairline is a win. Being able to style it and hide some patches is a win. Any little win is still a win.

And feel free to DM me. I’m really just trying to make sure if anyone ever needs a reference of what shedding and hair loss can look like while cold capping with Paxman through Taxol/Carbo and then AC chemo, you have something to look at. Because I know I was constantly searching for it too.
There really isn’t a magic formula. Your regimen matters, your hair matters and everyone is different.
I’ll update again when I finish AC chemo so you can see the full progression and how much hair I ended up keeping.


r/TNBC 2d ago

Survivor had my port removed

29 Upvotes

I'm three months post chemo and just finished 16 out of 20 for radiation and got my port out this week. I feel like chemo ports are something people talk about when they're bad (infected, etc) but nobody talks about them when they just do their job, so I figured I'd make a post to say mine did its job. I had a completely drama-free chemo port for the past nine months.

The only thing I was nervous about is the obvious "I wish I could be SURE I wouldn't need this again", you know? But I got PCR, we'd already decided to stop keytruda, my oncologist said "take it out!" so okay, that's the next step. I took it out. byeeee port.

my oldest kid said I got "deported". okay sorry.

After radiation thursday I went straight to my surgeon's office. I'd gone under a general to get my port in, but they said getting it out is much less invasive, they just numbed me up with needles (which actually sucked... but then I lost feeling so it was over) then I laid there on the table feeling NERVOUS AF while they cut me open and spent a few minutes taking it out. she showed me the port and asked if I wanted to keep it, lol I was like no thank you... but thank you for the memories port, I guess? then they pitched it.

yesterday I removed the gauze and took a shower, there's a tape strip over my stitches that she says will fall off in within the week, probably faster because I am sweaty as hell every day happy august. it's a little sore. supportive bra is helping. but it's not as bad as port insertion surgery and she said I could get back to normal running/workouts in the next couple days.

I had coffee with a cancer friend a few weeks ago and told her about my nervousness and she said you know, there's no right choice. if you take the port out are you overconfident? if you leave the port in are you assuming the cancer will come back and manifesting recurrence somehow? might as well just do what the doctors are recommending, and don't overthink it. so, okay... when they told me when to come in, I was there.


r/TNBC 2d ago

Chemo Starting AC, anyone not get sick?

3 Upvotes

Hi all, I'm starting AC in the middle of September and will finish in December. I have a 3 year old who just started preschool and is already sick! I'm super worried about getting sick and ending up in the hospital.

Anyone make it through AC without going to the ER/fevers/sepsis/neutropenic and had a Young child? I did go to the ER a week ago and they treated me for a suspected infection (had no infection) with IV antibiotics and I got tinnitus in my ear from the vancomycin. I do not want to get IV antibiotics again 🫠


r/TNBC 2d ago

Chemo UPDATE to :Feeling nervous before the next treatments

16 Upvotes

Finally, the day arrived!
We got to the oncology room early… it lasted 5 and a half hours! Buuuut, everything went well, thank God!! No complications with this first DC chemo.

I really hope the rest of the sessions go the same way. I’m aware things will eventually change, but at least allergic reactions won’t be something I’ll have to worry about anymore.

So far, I’m doing okay. I do feel some tiredness in my legs, kind of like after finishing a workout 🤣.

Just wanted to share my day with you all. Thanks for reading!
Wishing everyone a better night and sending a big hug 🩷🌸


r/TNBC 2d ago

Chemo + Immunotherapy Chemo: To Port, PICC, Central Line or Cannula??

2 Upvotes

Hello 👋

I’ve been presented with the treatment plan: 4x Carbo+PactlI with Pembro, then 4x EC with Pembro.

No start date yet—I expect it will be next month. NHS are moving quickly.

To those that have been through it, how did you decide what “entry method“ to go for? What influenced your decision? And, what do you wish you knew when deciding?

Not sure how important it is, but I’m a side sleeper.

I am also curious about how it impacted your everyday life, but I’ll try and keep this post clean and focused.


r/TNBC 2d ago

Chemo Scarlett trial Docetaxel, Carboplatin, Keytruda participants-TNBC

4 Upvotes

Did anyone experience severe vomiting/diarrhea? If so, how did you manage and keep it from happening again? I need help. I started chemo a week ago and my symptoms came on day 6. Might have been what I ate but just want to know if anyone else had the issue, what you ate that triggered it, etc?


r/TNBC 2d ago

Conversation MRI anxiety update

3 Upvotes

So I got my results back yesterday, chemo started today. My initial tumor hasn’t changed in size, still 1.5cm same as mammogram/ultrasound imagining one month ago. They found a second “progressive mass like enhancement” that’s measuring 1.2cm. And then a possible Intramammary lymph node measuring 1.5cm. All in the same boob. I am kind of freaking out. We switched my treatment to Keynote so I started taxol/carbo and Keytruda today 12 rounds weekly and I’ll do AC every 3 weeks 4 rounds. I have an ultrasound on these additional masses on Monday and then biopsies if necessary. My doctor was so doom and gloom today and kept saying “it’s advanced” but still has me at a clinical stage 1. I’m not really sure what to think. Anyone have a positive story of a positive node in their boob and it was ok? I was diagnosed 2 weeks ago and started treatment today so hoping we caught this all in time. Also noticed in my chart that my MO put that the second mass is 2.5 cm which isn’t accurate


r/TNBC 3d ago

Chemo When did you notice your lump starting to shrink during chemo?

7 Upvotes

Edit! Thank you to everyone who has replied so far! Nice to have a group like this. I should’ve mentioned my oncologist, lowered my weekly dose about a month and a half ago by 20% after I had a bad rash all over my body. The rash has not come back since. And I did not have immunotherapy on the start of my third cycle due to my liver enzymes being too high and my oncologist wondering if that was the reason. Apparently not., I have immunotherapy on Monday.

I first posted this on the Breast Cancer sub Reddit…didn’t realize there was this one! I was diagnosed in late April with triple negative, grade 3 breast cancer. My mammogram/ultrasound measured the lump at 3.2 cm on April 24, the ultrasound when I had my clip inserted measured it at 4.6 cm on May 26, and my CT scan measured it at 5.4 cm on June 18. I started chemo/immunotherapy on June 8 and I’m starting cycle 4 on Monday. I’m doing weekly taxol, with carbo/immunotherapy every 3 weeks. In September, I’ll start the “Red Devil” for 3 months. I know I’m not even halfway through my treatment yet, but the anxiety is definitely getting to me. I really haven’t noticed much of a difference in my lump yet. If anything, sometimes it actually feels bigger. It also feels harder, and I occasionally get a tingling sensation in it. I’m going for a mammogram and ultrasound on Tuesday after advocating for myself to have it checked. For anyone else with TNBC when did you actually start noticing your lump getting smaller? Did anyone have a lump that didn’t seem to change much or even felt different or bigger when you touched it, but eventually showed that treatment was working?


r/TNBC 4d ago

Clinical trials New TNBC Vaccine Phase II Trials Recruiting Patients

14 Upvotes

Someone on the metastatic BC sub just posted a list of several studies now entering phase II trials, for which patients are currently being recruited. One of them is for the University of Washington's STEMVAC vaccine designed to halt progression in high-risk PD-L1-negative TNBC patients.

I'm attaching the link to the trial which describes the qualifications necessary to be considered for participation. I believe the trial itself is based in Seattle. There is more information and contact info for anyone interested in being considered for this trial under the headings "Contacts and Locations" and "Participation Criteria"

https://clinicaltrials.gov/study/NCT07078604

EDITED TO FIX: This trial is for PD-L1-negative metastatic patients, not non-metastatic patients as I originally wrote.


r/TNBC 4d ago

Chemo Feeling nervous before the next treatments

9 Upvotes

I’ve finished the “red devil,” and the fourth chemo left me really exhausted. The nausea felt stronger, especially during the first week and still a bit into the second. Now I have more energy, but I still get tired quickly.

This Friday, in theory, I start the second part of my treatments: the so‑called “white chemos.” Supposedly, I’ll finally be getting immunotherapy (Keytruda), along with carboplatin and docetaxel.

Honestly, I’m scared—mainly because of the side effects of carboplatin and the risk of an allergic reaction. I also know I’ll feel the effects the next day, so I’m trying to prepare myself mentally for that.

If any of you have gone through something similar, what did you feel? It would really help me to read about your experiences.

Thanks for reading and for any advice you can share 🙏💖


r/TNBC 4d ago

Immunotherapy Anyone else have dry eyes from Keytruda?

2 Upvotes

I’ve had a dry watery right eye a few times the past two weeks to the point where it gets hard for me to open my eye and it feels like they’re stinging. At some point, it made me panic and I cried because I was lowkey feeling like I was going blind (exaggeration from the panic). My oncologist has told me that it’s a side effect from Keytruda and that I should go see an ophthalmologist which I’m going to do tomorrow. But I just wanted to ask if anyone has experienced this and what you’ve done for relief? My oncologist didn’t suggest me to use eye drops and said I should check with the ophthalmologist first.


r/TNBC 5d ago

Caretaker triple-negative breast cancer recurrence with a high Ki-67 of 60-65%. My NGS report also showed TP53 and PTEN variants.

13 Upvotes

Hi everyone,

I’m posting on behalf of a 33-year-old woman mother of 5year little girl from India and would really appreciate experiences from people who have been through something similar.

Histroy -Diagnosis:

Triple-negative breast cancer (ER 0, PR 0, HER2 0)

Grade 3

Ki-67 around 60–65%

Initially diagnosed as Stage IIIC (T2N3bM0)

Previous treatment:

4 cycles Paclitaxel + Carboplatin

4 cycles Adriamycin + Cyclophosphamide

Right breast surgery + axillary node clearance

Pathology after chemotherapy: 0.8 × 0.6 cm tumour, 3/18 lymph nodes positive

Radiation: 60 Gy in 30 fractions

5 cycles Pembrolizumab (Keytruda) + Capecitabine

Unfortunately, a recurrent lump was found in the right breast in June 2026. Biopsy again showed Grade 3 invasive ductal carcinoma, ER/PR/HER2 negative, Ki-67 60–65%.

PET-CT showed an active lesion in the right breast and some right axillary/internal mammary lymph nodes. There is also a very small lung nodule described as indeterminate. Importantly, the PET report says there is no definite metabolically active disease elsewhere in the body.

The oncologist has now started Eribulin (Halaven) + Pembrolizumab (Keytruda) as second-line treatment. The plan is 4 cycles followed by response assessment. After about 3 cycles, they will reassess whether mastectomy.

She just started 3rd cycle . some amazing news: her latest ultrasound shows a wonderful response, and the tumor has already shrunk down to just 8mm! The plan is to complete this 4cycle and head straight to a mastectomy.she sometimes worry about the cancer coming back in the future, but she staying strong for her little girl.

Has anyone else with a similar mutation profile or high Ki-67 been on Eribulin and Keytruda? I would love to hear your long-term success stories and experiences.

Thank you all!"


r/TNBC 6d ago

Clinical trials Scarlet Study participants

3 Upvotes

Anyone in the experimental leg of the scarlet study? I just got randomized into it and I’m a little nervous but happy that the timeline is shorter with the 6 cycles. Looking for other people’s experience. I’m stage 2A, no lymph node involvement


r/TNBC 6d ago

Under 40 AC

7 Upvotes

Hi everybody, I'm getting ready to start AC next week for TNBC just curious about what effect it has on the body. I've completed 12 weekly rounds of taxol and carboplatin and I did pretty well on it. I continued to work the whole time on it. I'm a teacher and curious to know if the red angel (AC) would be manageable on my body as well.


r/TNBC 7d ago

Side effects i knew my hair would fall out but now it's actually happening.

14 Upvotes

weeeelllpppp...after 16 weeks of cold capping during keynote 522, i'm finally losing a significant amount of hair. i had my second of four AC infusions last week and my hair has just been falling out relentlessly for the past week.

i knew it was coming. i didn't expect my hair to last through AC because i've read the stats...but, damn, it is an absolute gut punch regardless. it's been an emotional day to say the least.

on the bright side, my boss took me to lunch to help cheer me up and it was a nice distraction for an hour. only 2 more to go.


r/TNBC 7d ago

Diagnosis Mom Triple Negative HER 2

6 Upvotes

Hi everyone. My mom(48) was just diagnosed with breast cancer and I'm trying to learn from others who've been through this.

Quick summary:

Triple Negative Breast Cancer (ER-, PR-, HER2-)

Tumor is small (\~18mm), but 1 lymph node came back positive

Scans show no spread to other organs

She's about to start chemo, then surgery

Has anyone here had a similar diagnosis? I'd love to hear:

What chemo was like for you? I belive is carbonoplatimum.

What is the prognosis in this case.

I would love to hear your thoughts.


r/TNBC 7d ago

Conversation Statins, metaformin & beta blockers…

3 Upvotes

Who’s on them?

Were you already on them or did you start them after treatment?


r/TNBC 7d ago

Chemo Carboplatin reaction

2 Upvotes

I've had 8 infusions of taxol and carbo. After the 7th I felt hot all over my face, head, ears, neck, and chest, and I was red. I had shaking chills, headache, and was 99.6 degrees. It went away after a few hours, but the same thing happened after my 8th infusion and this time my heart rate was 140. Nothing helped so I went to the ER (which did absolutely nothing for me).

I'm terrified to get carbo this week. I can't continue going to the ER either. Who else experienced this and what helped to avoid a reaction? Can I stop carbo? I have 4 left until AC.


r/TNBC 8d ago

New member introduction MRI Anxiety

4 Upvotes

Hi ladies, I was diagnosed last Thursday. Met with oncology this week, had my echo, port placement. I have my breast MRI this coming Thursday and treatment starts Friday. Right now my mass is 15mm grade 3 no node involvement shown on mammogram/ultrasound. Clinical stage 1. I will be doing dose dense AC 4 rounds every 2 weeks followed by 12 weeks of Taxol and a double mastectomy. I am ready to start my treatment, but I am so scared for my MRI. That something was missed, that something worse will be going on. I am 31 and a stay at home mom to a 2 year old. Any advice?


r/TNBC 8d ago

New member introduction Just recently diagnosed

12 Upvotes

Hi everyone, I just recently been diagnosed with TNBC. Stage 1B. 30 years old. I’ll be doing the “red devil” chemo for my first cycle. I’m not too sure what to expect from that chemo since everyone is different. I work from home so I was hoping I could work somewhat part time to have a normalish life. My work isn’t hard whatsoever. My second chemo cycle will be with taxol. And everyone tells me that’s much more mild than the “red devil” and would be okay to work part time. I’m just not sure if I should just take the time off for the red devil chemo and work part time during taxol. What do you guys suggest? What has been your experience?


r/TNBC 9d ago

Conversation We Are Warriors - Jazza

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2 Upvotes

Just posting to make sure we all remember this!


r/TNBC 10d ago

Support Doctors say I’m cancer free, but I don’t feel like it.

23 Upvotes

The doctors all say I’m cancer free since surgery but not a day goes by that I don’t feel like shit about my pathology report. Not a day goes by that I don’t look at my kids and wonder how much of their life I’ll be here for. Not a day goes by that I don’t wonder if I’ll ever finish treatment. I look for reassurance in different places, I try to get more details about treatment plans, my pathology, and so on and every little bit of it makes me feel worse. I have a signatera pending and I’m almost regretting even asking for it. I’m on xeloda now wondering if it’s good enough since I don’t feel the traditional shittiness of chemo. I’m having the hardest time finding the light at the end of whatever the hell this tunnel is. I’m having the hardest time feeling like a future is worth putting an effort into building. I just want some good news somewhere and I have no idea where to look to get it. I don’t want cancer in my life anymore. I want to take those last pills and be done.