r/LivingWithMBC

I have actually suggested things to her doctors to help her many times too, mainly from information from women here. I truly hope you all get NED and something cures this one day. Best wishes to all of you.

So my oconologist called me to tell me the bad news about my PET scan- bone mets ( tnbc). So stage changed to IV. What really bothered me is that at one point I’m not sure if she was crying or just all choked up. I asked her why she sounded like that and she said because she had to give me this bad news. I since went on Reddit and many told me its not a death sentence and many tools in toolbox to treat. These past few days all I can think about is the way she acted. She is nice snd I like her. The facility is world class so I wouldn’t question her competency but I do think its kind of unprofessional… or she doesn’t think she can help me?

I have a trip on my bucket list outside of the United States that I have always wanted to go. Now I have this issue ( tnbc bone met, troveldy.) At what point would I ever be able to go ? When I’m stable when NED? My dr said we will see maybe in one year if possible to pause treatment. Anyone have travel experiences?

(Please be gentle. I'm having a hard time and feeling fragile. And struggling to find the right words to express myself.)

In my left breast, I have +++ that spread to many bones (de novo stage 4).

In my right, ++- that is contained.

I'm wondering if anyone else is managing something like this? Did you do any localized treatment, beyond systemic chemo/meds/whatever? I have a meeting with a surgeon coming up, because I worry the ++- will also spread and as mutations happen, it might be harder to manage them both. I'm hoping for a lumpectomy to remove it, but my oncologist thinks surgery will have 0 benefit.

Thanks to anyone who has any insights.

Hope you all are having an okay night.

I’m having one of those moments where I say what the hell this is too hard too much. Scan after scans, test after tests, biopsies etc. All those side effects and potential damage to other organs from all these drugs. I just got diagnosed tnbc bone mets. This morning I feel like saying bye to my oconologist and just pretend nothing is wrong as this moment I feel fine. I can’t believe you have to do so much just to treat it but not cure it. I know in a way I should be grateful as they at least have the tools in the toolbox to treat it unlike some other cancers but wtf.

Good morning my friends. We are practically shutins here on the east coast of U.S.A on this hot July 4th. I am basically immune to the idea that this is a holiday. All I can think about is my scan on Monday, as my title says. My onco repeatedly said, "glad it isn't in your organs" until it was this past March, my liver. I am on my 5th round of Enhertu. I so want to just get on with my days leading up to Monday without these constant mixed thoughts. Maybe it is working, maybe it's not. I am not sure what I am even looking for here. I suppose I should have tagged this venting. I have been in treatment for MBC for over 5 years. I had a robust response to vibrance and falsodex for almost 5 years and then fail after fail. Enhertu is my 4th treatment since. Lordy this is so hard though I know others have it so much worse. Yeah I know that others suffering doesn't diminish mine but I feel so overwhelmed for all of us and scared.

Hello mbc folk,

I may have to have surgery to remove my ovaries and a single lesion on my peritoneum. I had surgery with Stage IIIa (unilateral mastectomy and Diep flap recon) but nothing outside of those.

Have you had surgery since MBC diagnosis?
What was it for?
Was your treatment paused and restarted? Or was treatment different after surgery?

My doctor just called me the PET scan showed bone lesions. I was stage II or III going in. Now its stage 4 MBC. I will have a bone biopsy then trovedy ( not sure if I’m spelling it right). How am I going to tell my family? I just got handed a death sentence.

Hey friends 🧡 I am 5 weeks post surgery to remove tumors from my 3rd recurrence and started Kasquali just on Monday. By Wednesday, sudden onset of cellulitis around the surgery site and painful seroma with drainage at the previously healed incision :( The onc has asked me to stop kasquali while on the new antibiotics which seem to be slowly working.

Anyone else had these types of delays? I am concerned to delay treatment even more 😕 I am also frustrated as there always seems to be something and I want to just get on with it. I am know on the full dose of Fluvestrant which the onc says alone is still effective so I am technically still on some treatment.

Trying to stay positive and support my body while it heals once again. My energy has definately taken a nose dive and I am absolutely more cranky and going down the worst case scenario rabbit holes.

Next Monday I have my 3 month follow up since diagnosis. New set of scans and tests to see how well chemo is working and all that. Then Tuesday I follow up with my doctor and the plan is to start me on a bone strengthening treatment infusion right after that.

I work half days on Tuesdays so the appts are in the afternoon. I’ll have about 2 hours before the treatment. I kinda know what side effects to expect, flu like for about a day or so? My question is should I even bother having some kind of lunch after I leave work or just skip it? Am I even going to have an appetite around these treatments? My doc is wanting to do once a month then later move to every 3 months.

I am over a month post diagnosis, bone only, ER/PR+ HER2-.

I am still healing from my spinal surgery, I needed the tumor removed, it was an emergency so I still haven't done radiation yet. But after radiation, I'll be on AI, CDK46, ovarian suppression and bone shots....

I am more terrified of living a miserable life of side effects than the MBC itself. I keep seeing horror stories about side effects but I understand people with negative experiences would more likely come forwards than people who are just... living life.

So is anyone out there living OK lives with mild to no side effects?
How long were you on the meds?
What did you do to combat side effects?

Quick question to those of you who are familiar with Ibrance and how your WB react.

My WBC numbers are at like 2600 now. They were at about 8000 when I started IBRANCE 11 June. My question for you is during the week off of this medication does your WBC actually recover? And if yes, how well does it recover?

I don’t feel awful or anything. I don’t feel fatigued, even though my count is down, but I do find it worrisome.

I appreciate your knowledge!

My scan after 4 cycles of Enhertu showed an amazing result for my bones and bone marrow.

The tumours in my ovaries - that they believe are Krunkenberg tumours - have progressed with a lesion on my peritoneal. These Krunkenberg tumours are notoriously resistant to chemotherapy.

No other new lesions.

I have to wait until Monday to see if surgery is an option and it maybe Enhertu is ceased.

I’m angry - I’ve asked to have my ovaries out numerous times. I’m terrified this progression is so aggressive my life will change again. I’m worried about not having many treatment options.

I can’t even celebrate the incredible result in my bones and bone marrow.

After two scans showing shrinkage of all sites, the third scan showed stability. Is there any chance for further shrinkage, or is this as good as it gets? If it matters I'm scanned every 6 weeks. TIA!

Anyone with triple neg stage 4 met to bones with encouragement. Thank you in advance

I did all my research on keynote 522 thinking I had stage II or III but it turns out to be stage IV with bone lesions. Will be put on trodelvy and get bone biopsy. Can someone tell me what their experience have been for both?

Hi, everyone!
I’ve posted here before (link here) have triple-positive breast cancer.

It took a long time to figure out what was going on with my liver—spoiler alert: we still don’t know.

At my first appointment with the oncologist—after she called to say we’d found six lesions in my liver—we discovered that my breast tumor had shrunk from about 5 cm to 3.5 cm (measured by hand) after just one dose of AC. After that, she said it was an impressive response and suggested that, until we had the biopsy results, we stick to the previous treatment plan—namely, 4 cycles of AC chemotherapy every 2 weeks. An ultrasound-guided biopsy was scheduled immediately after the second dose of AC.

After getting through my second round of the “red devil” IV, I went in for a biopsy; I was really nervous—I hadn’t slept properly for about a week. They took me into the exam room and did a preliminary ultrasound, asking how many rounds of chemo I’d had (2) and wondering if I’d mixed something up. As it turned out, they couldn’t see my tumors on the ultrasound.

My oncologist ordered a CT scan to check whether anything was left in my liver. The CT scan was done after my third round of chemo, and it showed three lesions instead of six, and the largest one had shrunk by half to 1.1 cm. Realizing this, my oncologist referred me for a CT-guided biopsy.
While I was waiting, I underwent four cycles of AC chemotherapy, and my breast tumor shrank to about 1 cm (from 5 cm), so I was switched to weekly Taxol + Herceptin and Perjeta every three weeks.

The CT-guided biopsy was scheduled for the day I was receiving Taxol and Herceptin; I had received Perjeta the day before. Unfortunately, I had a reaction during the Herceptin infusion and was given additional medications (including aspirin!)—so my biopsy was postponed.

It was supposed to take place the day before the start of my new 3-week cycle. In the end, there was some confusion with the appointment, and they rescheduled me for another two weeks.

In the end, three months later (from April to the end of July), I finally got my appointment, and as I lay in the CT scan room, I breathed a sigh of relief, thinking it would finally be over. Then the doctor came out to me and said that my lesions were about 0.6 cm (they had been 1.1, 1.2, and 1.1) and that my rib was getting in the way of taking a biopsy.

So, we don't have biopsy confirmation that these are metastases, but they are shrinking with chemotherapy, which makes this outcome very likely.

I'm wondering if anyone else has been in this situation—what treatment plan the oncologists suggested, and so on—because I'm feeling a little lost.

Hi Everyone! A bit of a sad post today but I find myself missing my old summer job rn. It’s funny because I was a lil miserable there before I quit last summer, but I miss the people and the times when I could just get myself a “free” ICEE and dip n dots. (for context I used to work at this lil waterpark owned by the city). I miss driving to work, and how routine it felt. That used to be my normal.

My new normal is going to appointments and hanging back at home. I went to the beach today to break the monotony and it was really nice. Now I’m just back to being in my head again.

It’s weird sometimes I think about my last job too. I loved talking to the patrons and eating raw fish. It was a short lived job, and I didn’t really work there long enough to have friends, but I still miss how that felt normal. Since I was going through the diagnostic process at the time, my mind was a lil distracted so I wasn’t the bestttt at my job. I remember how my boss used to look at me like I was an airhead 😭 (mind you i just started working there a week after my pcp referred for me to get an ultrasound for my lump). Luckily since I was good at talking to ppl she saw some potential in me, but when it came to making the food it was a lil difficult for me to work in a fast-pace environment. Like even taking orders was a lil rough. I’d have a terrible habit of forgetting to ask if people had a gluten allergy if they were selective about the topics… (like why can’t ppl just let you know?!). So that’d lead to ppl ordering raw fish with gluten in it, while avoiding the gluten free toppings…Anyways, I hope once I go back to school I come back better mentally. It’s still uncertain if I’m coming back to school this Fall, but if I can I’d like to go back to my normal asap. Even if that means going back to the mess ups and the boss thinking I’m an airhead.

Anyone else have dreams of going back to their normal? even if it wasn’t all that perfect, it’s still your life yk.

I’ve had three cycles of Enhertu/Perjeta and have my first ct scan tomorrow. The primary breast tumor hasn’t been palpable since the second cycle. But I don’t know how my liver mets have responded. I’m really anxious. I’m de novo her2+ ogliometastatic with only two liver mets. All the research I’ve done indicates that if I have a good response on the first scan can indicate long term NED or statistically more likely to be long term NED.
I know a bad scan or mediocre still doesn’t mean much. I am a little worried about a bad scan but given how my primary tumor responded, that is not as much of a worry.
Just had to vent to people that understand what I’m going through.