After my last two infusions of taxol and carbo (7th and 8th) I had an intense allergic reaction to carbo and today I asked to omit carbo. My oncologist gave me the option to do extra pre-meds and oral steroids, but I told her I was too scared to continue it. Did anyone else quit carbo before their 12 weeks? Should I try to rechallenge the carbo?
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!"
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
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.
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.
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.
Who’s on them?
Were you already on them or did you start them after treatment?
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?
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?
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.
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!! 💕
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.
Anyone have a lumpectomy after Keynote 522 and opt out of radiation?
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?
Has anyone else's cardiologist kept them on a statin and beta blocker after the AC chemo was over?
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)
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.
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 😂)…
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 “cycle” 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 ❤️🩹💕
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 “surgery 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.”
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 “her experience”, but the SO had all the results and saw there were no nodes and it was under 2”. (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 “I wish I’d not done surgery first”. 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 “little more right”. I am relieved to have consensus and finally am at peace with moving forward. Again, I thank you all for sharing your experience.
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 :(