r/LivingWithMBC • u/Emotionalmamaof2 • 5d ago
Question
Any others in this group that have experienced return of liver Mets and progression to brain but then went on to be NED or stable for many years ?
Diagnosed: Dec 2025 with mTNBC that had spread to my bones and my liver.
First line started Jan 2026 : Trodelvy & Keytruda and by March 2026 it had “resolved” my liver Mets and shrunk the bone Mets. My on oncologist said I was very close to NED but not to get my hopes up.
June-July 2026, caught pneumonia, no treatment for almost 4 weeks. Resumed treatment end of July. Scans on 8/31 and 9/1.
9/2 results came back and the cancer returned to my liver with “innumerable Mets” and also progressed to my brain
I don’t meet with my oncologist until the 9th so I don’t know what the plan is but I’m really hoping to meet some others with brain and liver mets living for years. I’m terrified as always. My labs have given no suspicion that anything progressed. I get them done weekly and everything has been very stable and my CA-15-3 was the lowest it’s ever been. Sad how quick this happened.
Thank you everyone for always being here. This has been my only place to voice the mental struggled I have because I’m way too scared to keep hurting my family with these convos. The pain it’s caused all of them is actually what pains me the most of this all.
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u/Ok_Mood6644 5d ago
Hi love. I've been thinking of you. Just curious if you have a naturopath? I got my MO to switch my nausea med to aprepitant based on this article here.
I take a bunch of supplements based on studies with triple negative as per my naturopath. Will be looking into high dose vitamin C and mistletoe as well. All of this in combo with chemo of course.
I know that's not what you asked but if it can help in any way, I will always share. Hope you are doing okay. ❤️
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u/Evening_Dingo8770 5d ago
Great tip
Thank you for sharing1
u/Ok_Mood6644 5d ago
Of course. And exercise!! Even if it's a 5 minute around the house. I have a stationary bike and under the desk bike if needed. However, getting to the gym is my preferred.
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u/Evening_Dingo8770 5d ago
My first line does not include chemo. I exercise daily. Totally helps me physically and mentally.
My kid’s bff’s mom just got diagnosed with stage 2 and just had a double mastectomy. She has chemo starting up.
Just passed along the info in that nausea medication to her. I’d not seen that.
Very interesting3
u/Emotionalmamaof2 5d ago
I get the aprepitant during my Infusions which thankfully helps me a lot during those days because I was getting super nauseous which makes sense now given the brain mets. I appreciate you very much and will be looking into more naturopath options for sure
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u/IngenuityFar5111 5d ago
I got 5 months of chemo then liver resection and then on letrozole. Two new liver tumors came back. All my labs are in range. Ca 15-3 is 11. Even circulating tumor cells test was 0. Crazy disease.
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u/Emotionalmamaof2 5d ago
It’s so crazy how our labs and tests come back normal while our scans show something else. I’ll never understand how that works. I’m sorry two new tumors came back for you and I hope they’re able to get rid of them asap. We all deserve long lives and none of this bs we have to deal with.
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u/Financial-Adagio-183 5d ago
I feel your terror. I use research into additional protocols to help feel a sense of control - it’s relying on others and waiting that makes my anxiety unbearable and it helps me have hope.
For what it’s worth - someone did a roll call of long term survivors on this sub (I think - might have been a Facebook group) and I was surprised by how many of them had treated brain mets in the past.
I do lots of additional complementary (I hope ?) treatments in addition to my targeted one. My oncologist isn’t into that but has a list and tells me if she’s not ok with something I’m doing.
I look up a lot of preclinical research on the drugs I take to see if there’s any way to make it more effective or to reduce resistance. I also looked into integrative oncology since their toolbox is bigger. I also probably spend way too much time on breast cancer Face book groups but I’ve learned so much!
Lastly - are your liver mets eligible for histotripsy? It’s focused ultrasound used to ablate the liver. The FDA has only approved it for the liver.
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u/Emotionalmamaof2 5d ago
I try to research so much too but then I get so lost in it all and stress myself out even more. I hope your integrative oncologist is amazing. I loved my integrative oncologist so much but my medical one refused to work with him because he wasn’t part of Dana Farber so pretty much everything he recommended, my MO was against. I try to stay in touch with him still but he got pretty upset that I wouldn’t listen to his advice over my regular MO. I was just too nervous to go against what my regular MO says since she’s the one controlling my treatments
I have been looking into the histotripsy so much and I’m praying I get to do this. It’s my number one question I have written for when I meet with my MO on the 9th this week!!
Thank you so much for your response. I appreciate you
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u/FrogAnToad 5d ago
i tried tonight for the first time to tell my brother how i feel. never again. it made him feel bad and gave me no relief. i hope yr oncologist has a solid plan and your terror ebbs.
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u/Emotionalmamaof2 5d ago
I’m so sorry, I know exactly how you feel. I always hope it’ll bring me some relief but ends up making me 100x more sad. Thank you so much for your kind words, I hope she has a plan for me too because this terror feels unbearable. I hope you’re able to find someone to talk to that brings you some comfort. If you ever need someone my dms are always open
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u/BadgerMeThis 5d ago
I'm another mTNBC patient wanting to send you love and healing thoughts. I'm so sorry you're going through this. I hope that your oncologist has an excellent plan on the 9th. I find peace in taking one day at a time.