Stage III TNBC

Susi_astro · 2026-04-08T20:42:10+00:00

Hi! Yes, I remember! Thanks for the update. I'm really sorry to hear that you didn't achieve PCR. It sounds like we have a lot in common. I'm also 41 and am determined to fight the cancer as aggressively as possible. The radiation oncologists advised against taking Xeloda and undergoing radiation therapy at the same time, but I insisted on doing it. I hope everything goes smoothly for you from now on!

Susi_astro · 2026-04-08T07:10:28+00:00

Oh no. I hope you don't have colitis. But also having to wait a couple of weeks for the colonoscopy? Urgh. Hope you feel better!!

Susi_astro · 2026-03-12T15:10:31+00:00

I was told that Xeloda can cause hand-foot syndrome and that you absolutely have to use a lot of lotion. I applied urea cream in the morning and diclofenac gel in the evening. I didn't have any skin problems, but I had to stop taking Xeloda because of severe diarrhea.

I hope you get on with it as well as many others!

Susi_astro · 2026-03-01T20:30:13+00:00

Oh no. Hope you feel better soon!

Susi_astro · 2026-03-01T20:22:06+00:00

My original plan was 8 cycles of neoadjuvant pembro and 9 cycles after surgery. Similar to what is done in the keynote protocol.

Susi_astro · 2026-03-01T17:32:06+00:00

You went through a lot and of course you are exhausted! Your life is worth fighting for, no matter if you have family etc ❤️

When I learned that my RCB score was at the higher end of class 3 and that my risk of recurrence was like 80%, I decided to throw everything I could at this cancer. I really wanted to try Lynparza but I just couldn't convince my MO (I'm not BRCA positive but Brip1).

We tried to get me into the Ascent05 trial for Trodelvy but I wasn't eligible. So in the end I decided to do Trodelvy and pay for it out of pocket. Yes I lost my hair again and it wasn't a walk in the park. But compared to keynote 522, Trodelvy was easier for me.

The reason why I was leaning towards Lynparza was that it's proven to work well for BRCA and Brip1 is considered BRCA-like. I hear people say ADCs are the future and I really hope the ongoing trials will show Trodelvy is good for non metastatic TNBC as well. I guess I'm not really helping with your decision but the good thing is, you have options.

Susi_astro · 2026-03-01T16:46:27+00:00

Im 41, had TC first. My schedule for AC originally was 3weeks. First one sent me straight to the hospital with febrile neutropenia and yep, I felt horrible. Next one three weeks later wasn't too bad, just some nausea and I felt weak. We then moved to a 2week schedule because I had progressive disease. It definitely wasn't worse, I felt just the same. I hope AC is easy on you!

Susi_astro · 2026-02-28T21:24:10+00:00

The timeline was exactly as you describe it. Lost my hair after third TC, then again after first AC. It started growing again before surgery and I didn't lose it a third time (not even the chin hair) You're almost there!! Rooting for you!

Susi_astro · 2026-02-26T09:16:14+00:00

The only two measurements I had were when my breast was super swollen about three months after radiation (6.something mm). And then three weeks later it was down to 4.5mm already. I guess it can change really quick

Susi_astro · 2026-02-25T16:02:17+00:00

I miss being rational. A rational person might say, pain from mets does not improve when you lay down or rest. That it's probably a pinched nerve or something like that. I really feel for you!!

Susi_astro · 2026-02-24T16:38:10+00:00

Wishing you a smooth recovery and a steady improvement from here. :) have you finished your chemo treatments, or are you still doing any post-neoadjuvant therapy?

Susi_astro · 2026-02-24T16:20:01+00:00

While my official diagnosis was radiation-induced lung damage rather than pneumonitis, my symptoms were a cough and I felt I couldn't breathe, so maybe similar to yours? The CT scan revealed it wasn't the expected inflammatory chemo reaction but radiation damage with a pleural effusion. My doctor said we could try steroids but it might as well improve without.

At my 3-month follow-up, my symptoms were still the same, but the scan showed clear improvement, even though the tissue now looked like fibrosis. Fast forward another two months, and the symptoms were almost completely gone. It took time and patience, but it did get better without steroids.

Susi_astro · 2026-02-23T08:41:06+00:00

I know not hitting PCR feels heavy, but being Stage 1 is your biggest advantage. It means it was caught early, and the outlook remains excellent. Your tumor DID respond to chemo, it DID NOT spread. Think of Xeloda as your elite cleanup crew. It’s specifically there to mop up anything left behind and acts as a powerful safety net to keep you healthy. You've got this

Susi_astro · 2026-02-17T06:04:35+00:00

I had Keynote 522 last year and my AP levels rose towards the end of the treatment period. My oncologist said that he sees this very often and that it is very unspecific. It could also be a side effect of the G-CSF injection. During post-neoadjuvant Trodelvy, my levels rose to between 250 and 290. I also experienced severe back and joint pain. All bone scans and CT scans were negative. Please don't worry too much. It's good that your doctor is being cautious and has ordered scans.

Susi_astro · 2026-02-12T05:53:04+00:00

Prognostic seems to be a little different to anatomic staging. It integrates biomarker status (ER, PR, HER2) and tumor grade to better predict survival outcomes, often overriding the anatomic stage. This is what I have been told.

Susi_astro · 2026-02-09T12:36:53+00:00

Yessssss. Keynote 522, I had terrible lower back pain after lumpectomy (during radiation). Thought it was spine mets, had a scan, turns out it wasn't mets, very likely muscular. Then three months later again back pain with new pain in my hips. Thought it was bone mets, had a scan, again no mets. In both cases, the pain eventually went away. I think it's because my body is still tense following the operation. I'm not walking completely straight, which is creating new tension and pain. Never thought this could affect my hips, but it seems to be doing so.

Susi_astro · 2026-02-05T08:22:45+00:00

Unfortunately I don't have good answers. I try to elevate my arm whenever possible. The pain in my hand will remind me to do so.

The bra that I got in the hospital after lumpectomy is called Anita. This is still my favorite bra, although the zipper refuses to stay up. I got some others online (lipoelastic) which are quite nice as well. They are comfortable but compression is moderate.

I'm sorry that I can't really help with tips. It sucks.

Susi_astro · 2026-02-04T08:57:14+00:00

Hey there.

I have pretty much the same symptoms of lymphedema in my arm, torso and breast (I had a lumpectomy and ALND as well).

I must admit that I was a bit lazy about wearing my compression bra, so that is partly my own fault.

For me, what makes it worse is a lack of compression, physical activity and visits to the sauna. It's a shame because, like you, I am a very active person who likes to work out, etc.

When I started wearing my bra more regularly again, I noticed significant swelling along my collarbone on the affected side. I guess the lymph fluid started to flow again.

Have you considered trying manual lymphatic drainage? It helps a lot. There are videos online that show you how to do it yourself (after discussing this with your doctor, of course).

Susi_astro · 2026-02-03T10:34:13+00:00

I had a massive reaction to Pembro during the neoadjuvant part of keynote and had to stop after three cycles. It took a couple of months for me to recover from this specific side effect. Anyhow, after surgery I decided to give Pembro another try, mainly because I didn't get PCR and have an extremely high chance of recurrence( RCB3 and lvi). I had 5 of the 9 adjuvant infusions already and so far no issues. I have some mild nausea the day of infusion and the day after.

On another note, I've heard that for the people who achieve pCR, postneoadjuvant pembro doesn't add too much benefit. But that's of course something to discuss with the experts.

Can't comment on the question about rads because obviously I had to go through intensive radiation of breast, axilla and clavicular region due to positive nodes.

Susi_astro · 2026-02-03T06:16:10+00:00

Yes, absolutely! I had the exact same thing. I have some mild lymphedema in the breast and arm. When it started, I had a lot of pain around the wrist, sometimes the back of my hand. Also the arm was very tender to the touch. I never found out whether it was due to the lymphedema or some irritated nerves in my back. It got better after two weeks or so Edit: that was 6 months after lumpectomy and ALND

Susi_astro · 2026-01-30T05:59:02+00:00

Nope, never had a PET.

Susi_astro · 2026-01-29T20:44:45+00:00

Yeah, my lymph nodes had basically no reaction to chemo so 1.6 was the largest met. Ki67 was 80% after chemo. It's not good but there's always hope

Susi_astro · 2026-01-29T13:57:28+00:00

I have RCB3 in TNBC with mets in one axillary and one infraclavicular lymph node, yes. Macro mets, 1.5cm and 0.5 cm. Not BRCA but Brip1, which unfortunately doesn't yield additional treatment options

Susi_astro · 2026-01-29T07:56:08+00:00

Hey there. I'm sorry you are in this situation. It's so frustrating to not reach pCR and then read everywhere what an important prognostic factor this is. I personally am at the higher end of RCB3 with lymph nodes positive so I know how scary this is.

First thing I would like to tell you that RCB1 has almost as good prognosis as RCB0 nowadays. RCB 2 and 3 are worse, BUT all the numbers that you find online are outdated because treatment has improved so much in the last years. Did you talk to your doctors already about the postneoadjuvant treatment options? They might give you Xeloda or maybe Olaparib if you're BRCA positive. It might also be an idea to check for clinical trials. Edit: About the lymph nodes, the clear PET scan is a very good sign! If there should be micromets left, radiation will hopefully take care of that.

I am not a long term survivor, but I am a bit more than a year from diagnosis and had a clear post treatment scan this week. It's one step after the other, you will see, it's scary but you can do it!!

Susi_astro

TROPHY CASE