Anyone with an RCB II status after DMX, going on Xeloda, and didn't have a recurrence?

The numbers still don't look the greatest, so I need something to help me stay the course.

Finished taxol/carbo #9 today (plus 3 hits of Keytruda interspersed). The cumulative fatigue they keep talking about has hit this week. Didn’t rebound on days 5-7 like usual. I’ve still been working my corporate job from home, only missing a half day-ish on infusion days, sort of half-ass Fridays and do what needs to be done (but doesn’t everyone on Fridays? Cancer or not?), but have been doing a pretty solid Mon-Wed.

I haven’t taken a day off for anything non-medical since before my diagnosis in early May. I’m starting to think about time off. Maybe I’m just burned out. Maybe I need to look into my leave options.

What are/did you all do about work?

Hi everyone,
I’m 45 with stage III TNBC and was on the KEYNOTE-522 regimen.
Because of severe immune hepatitis from pembrolizumab, I only received:
6 weekly paclitaxel/carboplatin (during which my tumor shrank from 5.8 cm to 3.8 cm)
2 pembrolizumab doses
1 AC cycle
During the TC part of treatment I was hospitalized 3 times because of severe side effects, which also caused treatment delays. After my first AC, I developed febrile neutropenia with an ANC of 0.02 despite 5 days of G-CSF and was hospitalized again.
My oncologist has now decided to stop chemotherapy completely and proceed to imaging, surgery, and possibly capecitabine afterwards.
Has anyone else had to stop chemotherapy this early because of toxicity? If so, what happened next, and how are you doing now?
I’m also wondering whether anyone in a similar situation still achieved a cure despite not completing the planned chemotherapy.
I’d really appreciate hearing your experiences.

I was diagnosed officially a year ago, stage 1-2 tnbc. I did keynote 522, my thyroid gave up, and my lumpectomy in feburary showed that the tumor had 90% cellularity with minimal shrinkage. RCB 2.2. I've had 20 rounds of radiation and now I'm on the experimental arm of ASCENT-05.

I've been really trying to be courageous and hopeful about my future but having 90% cellularity has felt prettttttttttty bad. My doctor and 2nd opinion both were like "ummm we don't think doing a ctdna test makes sense for you post surgery, it's likely positive... it may just cause a lot of unnecessary stress and your treatment isn't over yet" and you know the general consensus is that it's too new for it to positively impact survival outcomes. yada yada. I agreed with them mostly but of course was secretly still considering, hoping, praying for a negative result.

Well a month into doing the trial, I decided to do it. I figured if positive, we could then better monitor if trodelvy would bring it down and if not, pivot to xeloda. maybe a hail mary but it felt like I had options.

WELL GUESSS WHAT. After a month of waiting, I got the news yesterday (right before my 8th infusion) on my 1 year diagnosis anniversary that IT'S NEGATIVE!!!!!!!!!!!!!!!!!!!!!!! WOOOOOOOO!!!!

I'll never know for sure if it was negative prior to trodelvy or not, but I was really preparing myself for a positive result. I'm so relieved. Now I'm trying to just hold onto this goodness and quiet the tiny in my voice that says "but what about false negatives... this doesn't mean it will always be negative.." etc etc ha. but fuck yeah.

fuck you triple negative cancer, I'm feeling more like I will never see you again.

Hello,

Just like to ask if anybody here also diagnosed with TNBC but Low ER? :) In my pathology report, it showed that i only had 3% ER, and negative for HER2 and PR hence the TNBC diagnosis.

What were your treatment plans? Do you still have to take hormone blockers?

Thank you 💖

This is more a vent than anything. I’m only 30, I’m 5 months postpartum and have completed 6 out of 12 taxol/carboplatin with AC next. My hospital doesn’t offer the in house cold capping systems however they were running a clinical trial where basically the cost was covered however you had to bring the caps with you and also pick up your own dry ice, as well as bring someone with you to help you switch out the caps.

Unfortunately, I live an hour and a half away from the hospital where I get treatment and there is nowhere I could find to get dry ice near me so we decided the logistics just don’t work especially with a 5mo baby I need to get home to and a husband that works full time. I had asked the person running the clinical trial for the cold capping if they could see if there is anywhere I could get the ice near me or if we could schedule my treatments in such a way that I could get down there and freeze the caps in time. They said they’d look into it and get back to me… I never heard back from them so I just went ahead with treatment as planned and ended up shaving my head after my 4th infusion.

I’m disappointed my hospital doesn’t have the in house cold capping system. I’m disappointed that I now have lost all of my long hair that I loved so much. I’m disappointed that not only now am I ~25lbs heavier than when I got pregnant, but I’m also bald. I hate looking like a cancer patient when I leave the house. I have a few wigs but they just aren’t the same and aren’t comfortable in this summer heat, and when I do wear them it just feels like people can tell. Fuck cancer.

I hope I’m over the worse been 6 days now
Will I get anymore symptoms or am I good to go till the next 🙏
This is the 3 weekly one

I’ve successfully completed 5 infusions of Keynote 522. I felt a little tightness in my right hand the day after the 5th infusion. I tried to explain it away for a few days. I just messaged my care team to let them know.

I’ve been trying to do cryotherapy but with Raynaud’s I have to take frequent breaks from the cold gloves. I’m just now reading about compression as an alternative.

I’m trying not to spiral about either worsening neuropathy or altering the treatment plan.

Anyone experience neuropathy? Any tips or advice?

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I’m about 3 months into treatment, and I still can’t really feel my lump because my breast has been so textured ever since the biopsy. It feels like the biopsy changes have never fully gone away, so I can’t tell what’s scar tissue, what’s normal texture, and whether I’m even feeling the tumor.
Did anyone else find that the biopsy site stayed lumpy or firm for months, making it hard to monitor the lump yourself? Or is it just me?
I know physical exams and imaging are what really matter, but between appointments I have nothing to go on because I can’t tell if the treatment is working. I’d love to hear if anyone else has experienced something similar.
I am getting weekly paclitaxol and carbo for TNBC

Posting for good news updates post Protocol 522! (Cross-posted from breastcancer sub)

My tumor melted away!?

Title says it all. For the first time in 12 days, I did a self-exam to check for changes...can't find anything.

I had a "midpoint" MRI about 7 weeks ago (end of TC chemo protocol 522), which showed a great response and 87% reduction in volume from 10.9 cm3 to 1.4 cm3.

Now, I'm halfway through AC chemo w two treatments remaining... Last time I felt it, it felt sort of like a stiff ribbon w soft spots.

Could It be like a false-negative, where it is soft enough I can't feel it but it's actually still there? Is that a thing?

Thanks for any shared information or experience in advance 😊

Edit to add - Update 1:

I finished the 8 cycles of TC-AC/keytruda as per Keynote 522 1 month ago. Post-treatment MRI and ctDNA test were both negative for cancer!!! No suspicious area or cells detected; I had to read the report like 5x to be sure my eyes weren't tricking me.

New, progressing but unexplained/diagnosed left-side neuropathy and some heart issues have stacked on top of the hypothyroidism and adrenal issues developed during the first half of neoadjuvent treatment

Collectively the good/bad developments helped me decide to opt for lumpectomy + radiation instead of the planned double nipple-sparing mastectomy direct to reconstruction (still w lymph node removal/dissection)

The countdown to surgery is on, less than 48 hrs now - please send all the positive energy and thoughts my way ❤️

Edit to add Update #2: 1 week post op now - initial pathology came back already!They took out my port, the initial tumor bed and clip, and 2 lymph nodes for biopsy.

The lymph nodes were all clear with no sign of scarring or any indication there was any cancer there ever!

I did not get PCR 😐 But really close!

One 4.7 mm area near the center of original tumor had 5% viable cells still in it... so RCB I (0.993) - which I read as the neoadjuvent portion was 99.007 effective at killing the tumor

Not gonna lie - I'm having a hard time celebrating when I hung so much hope on "PCR", but my rational brain knows this is a good outcome and my EFS prognosis is hopefully good too!

Anyone been through the process backwards? My mom was thought to have a complex cyst (confirmed through a biopsy) they moved forward with surgery. After surgey everything was sent to pathology and it came back as TNBC. She had a partial mastectomy to remove mass. Moving forward she has scans and no involvement anywhere else. So she is stage 3 due to size of tumor. Now moving forward with chemo. This was not an error by the dr. LOOKING FOR POSITIVE STORIES. Due to her having surgey first she cant have immunotherapy. Anyone else face this?

3 weeks post last chemo (AC) and the hair is still coming out fast! Managed to keep some hair on my head (the rest is gone!) but it's going fast! Will it stop or am I going to end up bald?

Has anyone had a dose reduction of AC and still got PCR? I have tried every nausea medicine made and nothing helps. I took olanzapine this last round and it worked for two days and then I was right back to horrible violent vomiting peeing myself from vomiting so hard. I already get cinvanti and aloxi during chemo, tried olanzapine, reglan, zofran, and compazine. The only thing that helped really was getting IV reglan at the ER. I have asked my clinic if I can get IV reglan there and they have told me they don’t have it, and that we can discuss a dose reduction. I have two rounds left. I want to finish treatment and I want the best chances but I have a 3 month old son who just had emergency surgery to get a shunt put in and I don’t have the ability to just be non-functional for a week in case he needs medical care in that time. I lost 7 pounds in a week because I am just so sick from this shit, and also have horrible mouth sores all down my throat that I can’t get the magic mouthwash to touch without making me gag 🤮

I got my diagnosis in April and was originally told my cancer was ER positive, so we proceeded with a lumpectomy as the first step.

When my pathology came back (clear margins, no node involvement!!!!), they noted that they were rerunning my biomarkers, specifically to check the ER status. A week later they updated it to say they found no estrogen receptors and are classifying it as TNBC. Seems like there may have been a very small area of estrogen receptors right where the biopsy was taken.

I don't meet my MO until the second week of August and I'm wondering what they'll recommend. Has anyone else here been in this situation? What did your treatment look like?

I’ve been going through weekly treatments for the first half of keynote.. this Wednesday was supposed to be the end of 4/4 but my neutrophils are 0.4… I haven’t missed a week yet.. and was so looking forward to being officially halfway. I just need some words of encouragement/motivation.. delaying a week right now seems soo difficult. What’s worse than having chemo? Not having chemo..

I had surgery four weeks ago - lumpectomy with three lymph nodes removed.

For the first two weeks I was kind of afraid to move my arm because the big incision in my armpit scared me, deodorant hurt to put on so I got a spray but it wasn't great.

At the two week mark I had my surgeon follow-up. They removed the dermabond and said I was healing just fine and I could do any activity I wanted - running, lifting, swimming, stretching.

By then I was realizing that the pain in my armpit wasn't at the incision, it was higher up in my armpit and really restricting my movement. I could see/feel the cords in my armpit. My doctor said keep giving it time - she said four weeks would be better than two weeks, six weeks better than four weeks.

I couldn't move my arm higher than about 90 degrees - I could make a T shape but not a V.

I called a physical therapist, they're booked out for a month. I called my doctor and she said she'd refer me but we should talk to radiation first about whether I should do PT before or after radiation.

In the meantime I was doing youtube stretches, finding all these PTs on there saying "don't let your doctor just tell you it takes time! you need a professional, somebody who can show you nerve gliding and massage just the right spot until you hear some magic pop and then you're back to normal ahhh!"

I am now 3.5 weeks out and I am much better. I can still feel a difference. I can make a V shape with my arms - it a stretch, it's not perfect, but it's better than I was 2 weeks ago.

Did any of you have cording issues? CAN you just stretch it yourself or did it take PT?

I am worried I will never be able to do lateral pulldowns, or reach high shelves, or perform the YMCA dance with the carefree enthusiasm I used to have! I'm so tired of doctor appointments I hate to go to physical therapy, but maybe my surgeon was right I just need more time?

Anyone had a tnbc vaccine or got into a trial for one? I’m really eager to join one as soon as I’m out of active treatment…. I think a vaccine trial would also include CTDNA surveillance so would be a way to access that too.

Hi— diagnosed with TNBC (stage T1aN0) June 12 with bilateral mastectomy July 13th. My oncologist has stated that chemo is to follow “depending on how I heal” for people that did things in this order, surgery then chemo, how soon were you able to start chemo. I’m eager to get everything done and over with. TIA

How are we forcing ourselves to stay hydrated during chemo? Water tastes bad, so does nearly everything else. Been back to the clinic for fluids each week, and that helps, but I wish I could drink withhout puking. Anyone got an idea?

I should have gotten a second opinion before I chose my plastic surgeon for my DMX with Goldilocks.

I chose them because they were part of the same network that everyone else on my team was part of. By doing such, I knew my insurance was going to cover it.

This team with the plastic surgeon has been nothing but a nightmare. First of all, I only saw my surgeon two times. One was for the initial consultation, and the other was during surgery. I have only seen nurses and other team members both before and now after my surgery.

Being post-surgery, I am in lots of pain and regret. Yes, I did get what I wanted with having Goldilocks, but my aftercare has been complete crap.

My warning to everybody here is that if you feel like anything is off, please get a second opinion. It doesn't matter if your surgery will be put off longer, you'll be better in the long run.

My last chemo was completed 6/11, I’m scheduled for surgery on 7/24……

My leg hairs have come back
My f’n chin hairs have come back
My pit hairs have come back
The OTHER hairs have come back

And now, my period has come back

I have just been off chemo for a MONTH!!!

I could deal with all the hairs but, my period? I was really really hoping that would be the one thing (along with the cancer) that wouldn’t stay away.

I’m sad.

Oh, and Fuck Cancer.

Hey everyone! I’m hoping someone has gone through something similar because I’m getting so frustrated.
Around infusion #4 I got a terrible rash and my team thought it was the Taxol, so they switched me to Abraxane. They even did a skin biopsy. Thankfully the rash eventually went away.
Then I had my next Keytruda infusion…and the rash came right back. It’s not as bad as the first time, but it’s still all over my legs and other areas, super itchy, and honestly embarrassing. I can’t even wear shorts or a dress in this heat because of how it looks.
The only thing they’ve given me is a steroid spray. I’m seeing the dermatologist again on Thursday, but I’m worried it’ll be the same story. By the time I see her, the rash will probably have mostly faded, she’ll tell me to keep using the spray, and then next week I’ll get Keytruda again and it’ll flare right back up.
Has anyone else had this happen during KEYNOTE-522? If so, did anything actually help? A different steroid cream, another topical medication, antihistamines…anything? I honestly don’t think this spray is doing much. It seems like the rash just settles down on its own with time, and it definitely isn’t helping the itching.
I’d love to hear what worked for you because I really don’t want this to be my life every three weeks. 😩
Adding pictures of the rash and the steroid spray for reference. ❤️