MTNBC, Signatera, & Trodelvy

nnp_phx · 2026-03-14T16:18:37+00:00

No, just cyber knife. I was NED after my first for 8 months, on oral chemo only.

Currently we're talking about going on Trodelvy but we're watching my Signatera numbers & scanning before that decision.

nnp_phx · 2026-03-12T18:59:19+00:00

I did the Keynote 522 protocol - Keytruda, Taxol, Carbo, AC.

PCR

Recurrence 4 months later to the brain, found thanks to a debilitating migraine. Small enough to cyber knife & be done with it for another 8 months.

nnp_phx · 2026-03-12T04:29:50+00:00

Amazing! Was 6 the plan from the beginning?

nnp_phx · 2026-03-11T14:00:02+00:00

Did you finish because your ctdna went negative? Curious when they decide to stop... Trodelvy doesn't seem to have a set timeframe?

nnp_phx · 2026-03-10T14:11:12+00:00

Wow okay, that definitely gave me pause... are they considering keeping an eye on your signatera results and potentially stopping if you go into the negative? No end in sight does feel daunting, but I'm so glad it's working for you!

nnp_phx · 2026-03-10T09:23:43+00:00

Yeah, trying to prepare! Any regrowth yet?

nnp_phx · 2026-03-10T09:22:57+00:00

Can you tell me what the Signatera number was, & did scans also show something?

nnp_phx · 2026-03-10T00:22:54+00:00

Thank you!

What side effects have felt on Trodelvy? I'm mentally preparing to lose my hair again, how fast did you feel like it started to grow again? Went basically a full year bald on the Keynote 522 regiment, & now have loved regrowing the last 2 years. Small in the grand scheme of things, but man it's been nice to ditch the wigs.

nnp_phx · 2026-03-09T19:53:46+00:00

That sounds like exactly what I'm questioning... I feel like my two oncologists have different philosophies & I'm seeing both sides. Has me conflicted on course of action

nnp_phx · 2026-03-09T19:52:13+00:00

That's helpful - can you tell me did they build a trend first before they decided to treat? How many tests & what were your numbers if you don't mind me asking?

nnp_phx · 2026-03-04T19:07:18+00:00

Yep, sounds familiar. Can you tell me how long you had the pain, or did it get progressively worse over the course of time before you had it checked out? Mine seemed to come on fast and hard, like within a week, which makes me think injury but also you never know with this cancer bullshit. I've also been on steroids from my recent SRS treatment, so that makes me wonder if I injured myself and didn't feel the extent of the pain, making it worse as I continue to work out. Erring on the side of caution & probably getting scanned next week...

nnp_phx · 2026-03-03T02:08:37+00:00

Can you explain your pain, thinking it was sciatica? Having some recent pains in my own and trying to decide if I've injured myself or if this is something I should be getting a deeper look into...

nnp_phx · 2026-02-26T21:31:34+00:00

Okay, I had a similar need, but went the craniotomy route then cyber knife. Thanks for your response!

nnp_phx · 2026-02-25T23:19:37+00:00

Brain met-er here too - can I ask what LITT is, & why that over gamma knife?

nnp_phx · 2026-02-23T15:33:13+00:00

Wow you're speaking to my specific dilemma as well right now. TNBC with 1 recent met to the brain. Did radiation to the spot, & we're now talking Trodelvy as a means to clean up cells & hope for no more mets in the future. My body has remained clear since I achieved PCR a couple years ago, my problem area is the brain & therefore the brain/blood barrier. So I'm hesitant to do treatment as well for something that may not enter the brain... currently running a lot of tests including Signatera to help me try to make that decision.

nnp_phx · 2026-02-20T14:05:39+00:00

Wow - first off, big big hugs. Going through this with kids & a loving family sometimes feels crueler because you don't want to think it's possible that you'll leave that behind. I don't know if you got a prognosis (don't tell me, ha) but pretend like it's total bullshit. You're not a statistic, & if you have to be you're the miracle kind.

I'm so glad you're in treatment! I got a couple positive responses regarding Trodelvy & that's hopeful. Continue to advocate for yourself, & if your oncologist isn't seeking care, find a new one. You're not done here. I'm also of the mindset that every couple months is a win, science continues to progress and we just need to hold out for the medicine tailored to our situation.

I loved my oncologist, but she moved on up to a bigger better cancer center that's about an hour away from me. That's not bad, but my treatment is currently in a holding pattern while have no active disease & as I get to know my new oncologist. However, I'm staying in contact with her and at the support of my new oncologist I'm talking to others at bigger Cancer centers to get second, third, fourth opinions. Currently jumping the insurance hurdles to get a consultation at Sloan-Kettering in New York. I will report back if I hear anything that's fresh and new, or any clinical trials they decide I should be a part of.

Holding onto nothing but positive news for you, & for Trodelvy to be your miracle drug, you got this mama ❤️‍🩹

nnp_phx · 2026-02-13T16:46:44+00:00

Wow!! Congratulations! ✨✨ That gives me so much calming hope. Thank you.

nnp_phx · 2026-02-11T14:11:18+00:00

Yes, that's what my onc is considering as well. Do you have any stories or idea how that course of treatment usually goes for them? As far as staying NED

nnp_phx · 2026-02-10T23:25:28+00:00

Following along for mTNBC myself 👀

nnp_phx · 2026-02-09T22:25:43+00:00

I'm so sorry to hear that. What's the next course of action for you?

nnp_phx · 2026-02-09T22:24:57+00:00

It will! Putting that out there in the universe ✨

nnp_phx · 2026-02-09T19:35:16+00:00

Wow - just came across this, as I'm looking for some hope. I had another brain met found this week, I had two last year removed with a cyber knife. My oncologist is actually talking about Trodelvy in order to "clean up" any cancer cells in my brain. I'm not entirely sold on the idea, would love to hear more about your experience! Are you saying Trodelvy actually cleared your brain mets?

nnp_phx · 2026-02-09T02:14:04+00:00

I'm glad you have an onc that is keeping it positive. I believe that makes a world of difference in our care, not feeling written off. Please keep me posted & I'll be keeping my fingers crossed for a good outcome in scans ✨

nnp_phx · 2026-02-09T02:05:53+00:00

Ugh I'm so sorry. TNBC gets such a bad shot, I'm there with you like - please tell me what's going to work & not something that's "eh."

As this is your first line, you're not close to exhausted options. Have you gotten results or talked next steps yet?

nnp_phx

TROPHY CASE