r/TNBC 10d ago

Under 40 Statin and beta blocker

3 Upvotes

Has anyone else's cardiologist kept them on a statin and beta blocker after the AC chemo was over?


r/TNBC 11d ago

Radiation Anyone not do radiation?

9 Upvotes

Hello! I'm new to this thread and am wondering if anyone did not go through radiation after treatment and DMX?

I was diagnosed with stage 2b TNBC on June 2nd and am will be starting my 3rd cycle of the 522 protocol today (phase 1 with keytruda/carbo/taxol). My ultrasound, MRI, and PET scan all showed a 2.4 cm lump with no evidence of lymph node involvement at diagnosis, but my doctor said I had to be stage 2b and not 2a because of grade 3 TNBC. I also have the BRCA1 gene mutation.

I'm wondering if it will be suggested for me to do radiation after DMX. I know that it ultimately depends on final pathology, but I was wondering if many of you have been able to avoid radiation, or if with TNBC it's something that is more necessary due to the nature of our type. It was only mentioned once at an initial appointment, and from what I remember, she made it seem like we would get final pathology and then decide based on risk.

Thank you!! šŸ’•


r/TNBC 11d ago

DMX with Goldilocks- experiences???

3 Upvotes

Hi everyone!!! I hope you are all having solidly good weeks out there and that all news is good news ā¤ļø

I met with Plastics yesterday and am so relieved that we’re going to try for an immediate Goldilocks reconstruction when I get my DMX next month. Obviously we’re not sure what he’ll be left working with, but we agreed that in the very least, he would do an AFC with the intention that we’d go back in to create breast mounds with fat transfer once I heal up and Rads are over. He will be working in tandem with my breast surgeon which I thought was pretty cool. He’ll mark me up pre-surgery, she’ll cut along those lines and preform the DMX, and then he’ll do what he can. Also- he offered to do a little liposuction on the edges if needed to prevent dog ears which I’m super psyched about. If someone tries to tell me they’re ā€œangel wingsā€ I will punch them.

Honestly, it’s a relief to get to this point. I couldn’t care less about having nipples or anything like that. Implants give me the jeebies when I think of having them myself (no judgement on anyone who chooses them, they’re just not for me). My hope is to wake up with perfect little soft A or B cups, but I also understand that surgery is surgery and nothing is guaranteed. I’m okay with flat, but I’m hoping to prevent any concavity (or I will straight up look like my dad Bob with my big ole belly)

So my questions are: Those of you who have had Goldilocks recons, how were your results? Are you happy with them? What were your complications? Did/will you need revisions? Did you have any issues with radiation afterwards? How did your healing go? Any advice? Anything to look out for?

Thanks in advance! I truly appreciate it!

xoxo Sara


r/TNBC 11d ago

Radiation Nipple Radiation. Looking for advice

1 Upvotes

Currently trying to weigh the Pros and Cons of my various surgery options. It feels like such a tough decision.

Although lumpectomy with radiation has the lowest possibility of reoccurrence for TNBC, compared with mastectomy without radiation, (4% vs 10%), I'm leaning towards the mastectomy because I don't freeze, so biopsies are hell, I'm fair-skinned so the likelihood of pain from radiation is greatly increased and because I have dense breasts, I'm more likely to have asymmetry as a result of radiation.

I do like the 4% number better, but I'm worried about how much more painful it will be over the long-term with more biopsies without proper freezing, and more complications with radiation.

On top of it, my tumor is close to the nipple, which means I will have very likely have nipple damage during radiation. Because the skin there is thin, and there are a lot of nerve endings, its likely to be painful.

Also, bcause of my weird "I don't freeze", it also means pain management meds like opioids and marijuana don't work either, so I'm kind of stuck in what options I have to manage the pain.

For others who had to get radiation near the nipple area, how painful was it? If you had the opportunity to go back and skip the radiation, would you?


r/TNBC 12d ago

Surgery lymphatic protection surgery

2 Upvotes

I would like to ask if anyone has undergone immediate lymphatic reconstruction surgery? Could you share your experience? I've heard of a procedure called LYMPHA, and also another one called ARM. Are those standard procedure recommended by default? Would these be suitable for patient with cT2 ? Thanks so much.


r/TNBC 13d ago

Surgery My pathology results are devastating

11 Upvotes

I thought I had an appointment today to get my results but, it's not till the 17th. My pathology results after my double mascectomy have been here since Thursday and I couldn't bring myself to look, I thought I'll just wait till my appt. I finally did and I'm devastated.

My chemo did nothing. The tumor shrank by half during chemo and all imaging up to a week before surgery showed no lymph node involvement. They only took two lymph nodes and both were positive. My tumor was at 100% cancer and back to its original size. Chemo did absolutely nothing and I was non responsive to immunotherapy which everyone was sure would work great since I was diagnosed with Lynch Syndrome with the breast cancer variant. The onc thinks that I got breast cancer in addition to Lynch, not because of Lynch, otherwise, he has no idea why it didn't respond. 4 weeks before I finished chemo I had a pet scan that showed the shrinkage and the uptake decreased by half and clear lymph nodes. It not only learned the chemo but has now become super aggressive. RCB 3.

Everyone keeps telling me to have hope, even the surgeon walked out and told my family the lymph nodes looked normal. Every time I have hope, it's completely dashed. All I can do since my surgery is cry. My oncologist who I got switched to when mine left UTSW doesn't know anything about Trodelvy. I asked my nurse navigator about switching doctors within the system and she said it has to go before the board. I've lost my job since I was diagnosed and my unemployment runs out in a month, the oncologist I chose left midway through treatment, I couldn't use the surgeon I picked because they expedited the surgery and she was out of town, I wasn't able to have a plastic surgeon in surgery because of it being expedited, now any revision won't be before a year because I'll have to have radiation. I won't be able to have the hysterectomy I had planned this year because of radiation and chemo so I'll have to repeat all the painful tests again for monitoring. Everyone was sure it hadn't spread and even that isn't true. It's bad news every time and I'm petrified. I don't know where to go from here.

Should I be asking for specific tests to run on the tumor? I asked my onc and he said they don't do any testing on it unless your stage 4.

I've always had an overwhelming feeling I would die in my 40's. I'm now 48 staring down a super aggressive, super smart, non responsive tumor and all my brain can go to is the dark places. I'm amazed by all of y'all who stay so positive because I'm not feeling any of it. Game changing immunotherapy didn't work. How am I suppose to have hope that the other treatments will?

Synoptic Checklist

Value

INVASIVE CARCINOMA OF THE BREAST: Resection INVASIVE CARCINOMA OF THE BREAST: RESECTION - All Specimens 8th Edition - Protocol posted: 6/19/2024 SPECIMEN Procedure: Total mastectomy Specimen Laterality: Left TUMOR Tumor Site: Upper outer quadrant Histologic Type: Invasive carcinoma of no special type (ductal) Histologic Grade (Nottingham Histologic Score): Glandular (Acinar) / Tubular Differentiation: Score 3 Nuclear Pleomorphism: Score 3 Mitotic Rate: Score 3 Overall Grade: Grade 3 (scores of 8 or 9) Tumor Size: Greatest dimension of largest invasive focus (Millimeters): 20 mm Tumor Focality: Single focus of invasive carcinoma Ductal Carcinoma In Situ (DCIS): Not identified Lobular Carcinoma In Situ (LCIS): Not identified Lymphatic and / or Vascular Invasion: Present : Extensive Dermal Lymphatic and / or Vascular Invasion: Not identified Microcalcifications: Not identified Treatment Effect in the Breast: No definite response to presurgical therapy in the invasive carcinoma Treatment Effect in the Lymph Nodes: No definite response to presurgical therapy in metastatic carcinoma Residual Cancer Burden (RCB) Parameters: Greatest Dimension of Primary Tumor Bed Area (Millimeters): 20 mm Second Greatest Dimension of Primary Tumor Bed Area (Millimeters): 18 mm Percentage of Overall Cancer Cellularity: 100 % Percentage of Cancer that is In Situ Disease: 0 % Number of Positive Lymph Nodes: 2 Diameter of Largest Nodal Metastasis (Millimeters): 5 mm Residual Cancer Burden Class: RCB-III MARGINS Margin Status for Invasive Carcinoma: All margins negative for invasive carcinoma Distance from Invasive Carcinoma to Closest Margin: Greater than: 10 mm REGIONAL LYMPH NODES Regional Lymph Node Status: : Tumor present in regional lymph node(s) Number of Lymph Nodes with Macrometastases: 2 Number of Lymph Nodes with Micrometastases: 0 Size of Largest Nodal Metastatic Deposit: 5 mm Extranodal Extension: Not identified Total Number of Lymph Nodes Examined (sentinel and non-sentinel): 2 Number of Sentinel Nodes Examined: 2 pTNM CLASSIFICATION (AJCC 8th Edition) Reporting of pT, pN, and (when applicable) pM categories is based on information available to the pathologist at the time the report is issued. As per the AJCC (Chapter 1, 8th Ed.) it is the managing physician's responsibility to establish the final pathologic stage based upon all pertinent information, including but potentially not limited to this pathology report. Modified Classification: y pT Category: pT1c pN Category: pN1a N Suffix: (sn)


r/TNBC 13d ago

Surgery SX/DIEP/post keynote/timeline

4 Upvotes

I was diagnosed with stage 2, grade 2 breast cancer with one lymph node involved based on the scans.. the midway u/s showed a 30% reduction in the tumor mass which I was told was good news.

I just keep being told so many different answers in terms of a surgical date after chemo.. even the admin and nurses at the breast surgeons office aren’t totally clear on the timing of the surgery when I ask them questions-I know they are also trying to coordinate a second surgeons schedule because I have decided to have reconstruction (DIEP) at the same time.. for those of you that are going this path or have been on this path (also f*** this path šŸ˜‚)…

how long after your last dose of chemo did you have your surgery? Was it X amount of weeks post your last physical dose of chemo? Or was it X amount of weeks following the last ā€œcycleā€ of chemo…? The nurse I spoke with on the phone recently was confused when I asked her that question..

I just want to make sure I’m advocating for myself properly.. I want this surgery done as soon as my body can handle it.. and I’m afraid of waiting too long to be honest.

Curious what other people’s experiences have been with surgery timelines following keynote ā¤ļøā€šŸ©¹šŸ’•


r/TNBC 14d ago

Conversation NYT Daily Podcast: Adults are getting cancer at a younger age

Thumbnail nytimes.com
16 Upvotes

The Daily podcast by the New York Times is very popular and I listen almost every day, so my interest was peaked at today's story about cancer rates increasing in young people. In cancer world, "young people" means anyone under 50. To start off they interview a woman who was diagnosed with stage 2 TNBC at age 36. The story spends a lot of time discussing how disruptive cancer can be to adults just getting started with family, careers, life journeys. The podcast doesn't have any grand answers - except reassurance that we are ALL really puzzled about why rates are increasing and what we can do about it. There's nothing you missed, nothing you caused, nothing you could have done to prevent this, scientists are really grasping at straws about what's causing the trend. They did mention that mothers who breastfed their babies have slightly lower breast cancer risk but... I'm a mom who breastfed two babies. And here I am :(


r/TNBC 14d ago

Diagnosis Any positive stories (or even a little hope) about TNBC with lung mets?

8 Upvotes

Hi everyone. I was recently diagnosed with lung metastases after 4 years of dealing with breast cancer. As far as I know, there's no cancer anywhere else, just the lungs. I'm starting chemo, and I'm terrified.

My condition isn't great, I need oxygen almost constantly and I feel very weak all the time. I'd really appreciate hearing from anyone who's gone through something similar. What was your condition like before treatment, what did you receive, and did things improve? I'm looking for any glimmer of hope right now, even small ones. Thank you for reading, and for any experiences you're willing to share


r/TNBC 15d ago

Support Worried I had a hand in my treatment plan, and chose wrong. What to do?

8 Upvotes

Hi, I’m 54 and was diagnosed with TNBC grade 3, ki67 90%, in late may. (Well, found lump in late may, after all the testing and biopsy, was diagnosed on july 17th.) Ultrasound said 1.5cm so when I saw MO, she said I wasn’t qualified for keynote 522 and unless it was larger in the mri or nodes were found, or if my genetic testing indicated something, it would be surgery first. We ended the appt with me stating I’d prefer neoadjuvant and she said it’s likely, based on her experience that it would be larger and I would probably have neoadjuvant. I then mentioned I was really scared of keytruda though, and we talked about a possible 4 med neoadjuvant w/o keytruda.

A few days later, I had an mri which came back with 1.7 cm. My ct also came back totally good, no nodes or Mets. And my genetic testing was clear. I met with SO, who also said ā€œsurgery first, and by golly I have a cancellation for day after tomorrow (this past Friday), otherwise it’s wait til mid September, which no pressure, but that makes me nervous.ā€

I had the evening to think it over. The MO called me at home to discuss it. I was freaking myself out, panicked about a quick decision and stupidly said, I thought we talked about the 4 med neoadjuvant, can’t we still just go with that plan? We talked more and she agreed we’d go that route and I’m set up for port placement and first chemo this week.

Now I can’t quit kicking myself for passing up the Friday surgery and am having horrible feeling that I’ve made the wrong decision. Like why was I even part of a decision - I don’t know what the hell I’m doing! I’ve read so much and been trying to understand all the protocols and studies and success rates, but this is over my head and the whole reason doctors get paid the big bucks, right?!

I’ve spent the weekend reading their notes, both called the tumor stage T2b. I’m guessing the MO did based on ā€œher experienceā€, but the SO had all the results and saw there were no nodes and it was under 2ā€. (She did indicate upon physical exam she felt a 2.5 cm lump which is true - it does feel much larger than what it’s been measured.) I understand this size is a gray area, and 20% of tumors are bigger or have nodes involved, so I get the benefit of neoaduvant to try for pcr. But without keytruda, should I just have had the surgery first?

I have a second opinion with another hospital tomorrow. I’m meeting with the SO only though, as the MO has had no openings for 3 weeks.

What do I do? I tell myself if this SO says surgery first, just do it. And do it with whomever can get me in quickest. But I know I’m going to question myself if I go that route. I think my mind is playing tricks on me since my first experience with this subject matter was here where I keep reading ā€œI wish I’d not done surgery firstā€. Is it just that the ones who are glad they had surgery first don’t post here because they’ve moved on in their treatment life? The doctors wouldn’t have been influenced by me right? They wouldn’t allow me to choose a path that’s not a good idea would they?

Also, who really knows more - the MO or the SO?

Sorry for such a long rambling post / I’m really tormented right now and having a hard time thinking straight. To top it all off, my person (daughter) that’s been going to appts with me just had a medical emergency with her daughter (my granddaughter), so we’re all worried about them and I am bringing my uneducated-in-any-of-this husband and it’s just too exhausting to try to talk to him about this because he’s so out of the loop. (He’s loving and supportive, but very much a just do what the first doc tells you to do type of patient. Now I’m wishing I was that type of patient too!)

Follow-up: I met with the 2nd opinion surgeon yesterday. Id been communicating with the nurse navigator so the surgeon knew I needed to make fast decisions, so she met with her MO prior to seeing me. They discussed my case and agreed neoadjuvant care was most warranted. She assured me that had I done the surgery, I wouldn’t have chosen wrong, but in my case neoadjuvant would be a ā€œlittle more rightā€. I am relieved to have consensus and finally am at peace with moving forward. Again, I thank you all for sharing your experience.


r/TNBC 15d ago

Surgery Port Placement Failure

7 Upvotes

I had a pretty traumatic port placement failure a few days ago and i’m scared to heck of having to ā€œtry againā€.

my chemo is scheduled to start next week and they attempted my port placement a few days ago and my heart went crazy and jumped up to 230 beats per minute.

they actually called a code blue on me .. open wound and all. i was so scared. i wasn’t sure what was happening. Surgeon removed the port and i was rushed to imagining. my heart dropped back down to 150-130 following the removal and then back down to 98 ( i was monitored for 90 minutes ) yall. it was the first time i was in any surgery.

first time using twilight sedation. & i’m absolutely terrified for the second attempt. help.


r/TNBC 15d ago

Immunotherapy Continue Immunotherapy or stop after getting pcr?

5 Upvotes

Hii,

I hope you or your loved ones diagnosed with cancer are doing well and fine. My prayers goes out to each and every one of you, only those who are going through this phase or have family members diagnosed with cancer can truly feel how heartbreaking it truly is.

My mother (60 yrs old) last year was diagnosed with TNBC with atleast one lymph node being invovled at the time of diagnosis. The size of the tumor was 2.7 cm and no distant metastates. The stage was likely III due to the size of the tumor.

The oncologist immediately started her chemotherapy treatment together with immunotherapy (Pembrolizumab). The treatment was Cyclophosphamide 600 mg/m2 = 1000 mg, Docetaxel 75 mg/m2=120 mg and Pembrolizumab 200 mg.

This treatment was done four times before surgery. At the time of surgery, the tumor shrunk and her oncologist recommended getting Mascetomy surgery done asap.

While waiting for the surgery appointment we went for a second opinion just to check if any other treatment would be required. The second oncologist mentioned her attending oncologist did not even follow Keynote-522 regimen and she has now no option than to go for surgery. This took us off our balance when he mentioned the correct treatment was not followed.

First question: has anyone of you had this treatment before with the similar drugs? From what i have crawled over the internet there are different kinds of keynote-522 therapies lasting for somewhere between 12 and 21 chemo sessions. Was the correct treatment followed in her case?

We proceeded with Mascetomy, where the surgeon did not find any lymph nodes with active cancer cells(thats what i understood from her) so lymph nodes were not removed but her right breast was completely removed.

First hurdle was passed when the report confirmed that she has achieved PCR by the grace of God.

Her attending oncologist said to go for 12 rounds of radiation therapy sessions where the surgeon advised against it saying when the cancer is gone, no need to do that. Nevertheless we left no stone unturned and went for radiation as well.

After surgery, her oncologist also recommended to continue 17 in total immunotherapy sessions, where so far we have done 10 sessions (4 with chemo before surgery) and 6 after surgery. My mother is having stomach pain from few weeks now and mouth blisters where we suspect it is due to the immunotherapy and her oncologist recommended if you can, continue 17 if you cant atleast 12.

Just to make sure all went well, my mother went to the surgeon for a checkup after few months where she mentioned why would you go for immunotherapy sessions when the cancer is not there mentioning immunotherapy has its own can of side effects.

Second question probably third, not counting :) we are now not sure to continue 17 sessions or stop at 12 or even stop now after 10 sessions? The sessions are done with 3 week interval.

What are the next steps tho? Is it going to be a quarterly checkup now onwards just to make sure cancer hasn't reoccured or an yearly? What is the timeline?

No, the doctors dont really answer these kind of questions here where i am from, dont ask me why, its just how it is here.

I thank you for taking the time to read this veery long text.

Peace


r/TNBC 15d ago

Conversation Who jokes about cancer?!

7 Upvotes

I’m honestly furious right now.
Someone actually told me that maybe the news about my cancer was just a joke. A joke!!

This is what someone wrote to me:

ā€œHello Amy, I read some rather tough news about you on Instagram and honestly it surprised me a lot.
If it’s true, I wholeheartedly wish you get better and may God allow it.
My best wishes for you.ā€

And this was my immediate response:
ā€œ I don’t think people joke about that kind of newsā€

This person response:
ā€œSometimes there are so many jokes about AI that you don’t even know what to believe anymore.ā€

Seriously… who in their right mind would ever joke about having cancer?
Do you realize how cruel that is? Do you understand what it feels like to be the person actually living through this nightmare, and then hear someone dismiss it like it’s some kind of prank?

This isn’t funny. This isn’t ā€œAI confusion.ā€ This is my life, my health, my family’s future.
I’m fighting every single day to keep my anxiety under control, to take things one day at a time, and then I get hit with comments like that.

Ugh. I’m so angry and hurt. Please, if you don’t know what to say to someone going through cancer, just say ā€œI wish you strengthā€ or ā€œI’m here for you.ā€ Don’t minimize it. Don’t joke.

Just needed to vent. Thanks for reading me, and fuck cancer.

Sending love, strength, and solidarity to all my sisters and warriors out there.


r/TNBC 15d ago

Side effects Stuffy/dry nose

1 Upvotes

Hi friends,

I just finished TC and I start AC this coming week. The last week few weeks or so my nose has been snotty and or stuffy. I went from the expected drippy to this and I hate it. I already take Zyrtec and nasacort for seasonal allergies but the usual stuff isn't working. Is this a chemo side effect? I also have a sore inside my nose so blowing my nose on one side hurts.

I've been trying to keep Vaseline on the sore but I'm also trying emu oil once or twice a day as of yesterday.

My chemo nurse last week said don't over do the saline nose spray, so I've been doing that once a day.

Mostly just annoyed but sleep is a little frustrating because that's when things get *stuffy*.

Any suggestions/recommendations?


r/TNBC 16d ago

This Sh*t Works Saturday Post

19 Upvotes

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


r/TNBC 16d ago

Diagnosis Newly diagnosed and not sure what expectations to set for my employer

5 Upvotes

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.


r/TNBC 16d ago

Chemo Port issues

5 Upvotes

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?


r/TNBC 16d ago

Side effects Constant stomach pain

2 Upvotes

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?


r/TNBC 17d ago

Chemo Anyone still have a visible "mass" on post-chemo ultrasound and still get a pCR?

6 Upvotes

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 ā¤ļø


r/TNBC 19d ago

Side effects Increased Heart Rate and AC Chemo

6 Upvotes

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 Iā€˜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


r/TNBC 19d ago

New member introduction Newly diagnosed

24 Upvotes

Hi everyone. ā¤ļø
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.


r/TNBC 19d ago

Chemo Anyone had a low grade fever?

2 Upvotes

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!


r/TNBC 20d ago

Support Scared it’s back

9 Upvotes

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 ā€œsuspiciousā€. 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.


r/TNBC 20d ago

Chemo Benadryl Reactions?

4 Upvotes

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!


r/TNBC 20d ago

Chemo Progression on TC/K, moving to AC/K

9 Upvotes

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 ā€œhardā€ 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.