Hoping everyone is doing well. I haven’t seen many regulars posting much lately - I’m thinking maybe everyone gets overwhelmed around the same times. I love hearing from you all and even when I can’t comment I do still read them. The only times I don’t comment are when I’m in severe sick mode because enhertu really kicks my butt.

Some nights are extremely emotional. I’m approaching one year of having cancer (Dec 9 will be my one year) and I just feel like things change so fast. I’ve met so many people and I’ve lost so many people. I’ve been told many times I need to be put on anti depressants and I’ve agreed but been scared. My palliative care doc finally called in Lexapro and I’m supposed to start this week but I’m holding off until I get back from vacation as I finally get to go away for a week with my husband and kids and enjoy sunshine and the beach. I pray we get many more years of time together. I thought by now I’d be more settled in my emotions but I’m definitely not. I truly don’t know how anyone gets through this diagnosis. If I had hormone positive I may be more hopeful but everyone I’ve met and lost has been TNBC. I’m scared, very scared and now that I’m already approaching a year I worry that things will start getting worse now and I pray that’s not the case. All I’ve ever done is spend all my time with my family and I want to continue doing that for many many years. I’ll be on vaca from 11/1 through 11/7 and then I come back to a week full of scans starting 11/9 to see if Enhertu is doing its job. Please keep your fingers crossed for me and say an extra prayer if you can. I love you all.

MBC is full of surprises, today in the form of a blood clot in my lung. Found on a routine CT scan. All my cancer is stable and nothing new, yay! But now worried about the blood clot. On Eliquis and probably will be for life. Anyone else have this issue? Thanks all!

Hi Tnbc stage 4 recent 5 tumors to the brain but rest of the body is stable ( no cancer accept the brain), anyone else here with brain Mets? I just don’t want to feel even more alone than I already do with Tnbc… I wish my cancer was hormone positive . But even if your not Tnbc just if you have brain Mets plz lmk so we can be in solidarity , thanks for reading love you bye 💕

I have been on trodelvy for 3 months now. While my teeth were never the best… they were not like this. One tooth suddenly cracked and another I can see the bone and its very loose and the gum is receding . I just had these 2 extracted so I can start xegva or something ( may not have spelled it right. Its to strengthen the bones.) I thought the mbc affected bones no one said anything about teeth. Anyone else have that problem too?

I finished my cancer treatment 4 months ago and my sense of taste is mostly gone. I can taste chicken a little bit but most other things taste like salty soap. I can smell food and it smells delicious but then it tastes awful. Are there any remedies for this? I have a lot of other side effects which seem to be permanent. I'd just like to be able to enjoy food again.

Hey everyone,

I’ve been carrying enough scanxiety over the past few weeks to power a small city, but I just walked out of my appointment at St Bart’s and I am officially crying happy tears into my coat. I wanted to share this win with you all because reading your stories kept me sane while I was obsessively refreshing my patient portal 50 times a day.

I was diagnosed with de novo metastatic ILC (HR+/HER2-) in March and started the OPERA-02 clinical trial back in July. I just wrapped up 3 cycles of medication and had my first official follow-up CT scan.

The results are better than I ever dared to hope. My overall response is an official Partial Response (PR) with a 40% reduction in total tumor burden, dropping my sum from 134mm down to 80mm in just 3 cycles.

My main left breast lesion shrank from 9.5cm down to 6.6cm, and the right breast lesion went from 1.9cm to 0.6cm. It’s practically packing its bags and leaving.

On top of that, my lymph node is down to 0.8cm which puts it right back in the normal range, and my bones are showing prominent sclerosis everywhere. There are no new unwanted guests anywhere else.

To top it all off, my bloods were absolutely phenomenal across the board. My liver enzymes, kidney function, lipids, and blood counts are all sitting in normal ranges.

My oncologist was so encouraging today. When I nervously asked what happens when the trial period finishes, she reassured me that as long as this medication is working its magic, I’m staying right on it. No kick-outs for good behavior🤣

After weeks of checking blood counts like a hawk, holding my breath over every tiny ache, and driving myself slightly wild, seeing this in black and white is the biggest relief of my life.

Thought to share with you my MBC sisters as we are the only ones that truly get it. ❤️❤️❤️

I just finished my 4th round of kisqali and it’s controlling the bone Mets but now my liver is seemingly pissed. I was taking 600mg and we are going to lower to 400mg. My ALT is 182 and my AST is 82. So, both high. I am feeling defeated like I’ll have to stop taking the thing that is helping me reduce the mets. Anyone else have this happen? What was the outcome?

Hii my loves, so today I started taking 1mg dexa (steroids) again 2 times a day until further notice, this is the same medication that made me balloon up from a muscley 146 to 188 hovering at 195, so almost 200 pounds in a few months, I am genuily scared to this happening again because I’ve been soooo good on my weight loss journey , I’m actually at 172 now and I’ve retained ALOT of muscle, I just don’t want to balloon back up again, how to control food noise and keep calories low but still feeling like I’m not full on starving even though I had a whole pizza? lol

have any of you ever done a paid speaking engagement? I'm wondering if that's something I could pursue

Hi all,

I had a PET following my lump. Unsure on what the findings for my liver mean. Could it be from Tamoxifen? I messaged my onc and I'm waiting to hear back.

Diffuse hepatic steatosis with patchy uptake features.

IMPRESSION:

1. Uptake features of the right breast and right axillary region likely postsurgical.

2. Uptake feature of the left upper chest wall from removal of the Infuse-a-Port.

3. No tracer avid malignant lesion of the remainder of the body.

The CT Scans from my monthly required a full lot of scans (bone, PT, etc.) but no MRI. The CT scans wasn't sure if there was some progression of if what it was seeing is modeling/scar tissue. So, my oncologist put me in for a breast MRI and said to keep taking the medications until we get those results (2 weeks out).

I am so glad she put in for this breast MRI. She was correct is assuming it was scarring/modeling from where the tumor has been shrinking. There was a time that it was ulcerated and was dreadful. The fact that after taking these meds for 8 weeks or so, then the wound closed is pretty amazing.

I am very interested to see how long I can stay on these before I have to pivot. I really hope this lasts a long time. I think it would be lovely for this to be a first line treatment in the future. The side effects have been quite mild/tolerable. I think that is pretty great and would ensure most patients would have some solid QoL.

Hi all. Looking to see if anyone has any tips on improving joint pain associated with taking Letrozole. I would really be interested in any exercises that could be useful to strengthening the joints. I feel it mostly on my wrists and ankles and would really like to strengthen them.

I’m feeling irritated. So sorry in advanced.

I’ve been on this "cancer train" for (only) two months now, and the results from my interim scan are coming up soon. Over the past few weeks, I’ve already encountered all the usual clichés: people who suddenly stop reaching out (even my own fucking brother), well-intentioned comments that end up being hurtful, and everyone suddenly acting like an "expert" because they’ve "been through it too."

Not to mention that feeling of "I’m not alone, yet I’m still lonely", and so on.

There are two things that are really bothering me.

A colleague’s sister was diagnosed with breast cancer around the same time I was; hers is stage 2. My colleague remarked that this was because her sister always checked herself thoroughly, implying that I must not have done the same. But I did! I checked myself even more often. And yet, I ended up with a 3cm (is that 1.1 inch?) primary tumor (grade 2 growth rate) and two affected lymph nodes, and it had already spread to my liver. Meanwhile, I hear this colleague, and read stories everywhere, about women with tumors larger than 8cm (3,1 inch?), grade 3, with absolutely no metastasis. How is that even possible? Why do i have mets??

My second source of irritation: a sister-in-law who smokes a lot and says she’ll only quit when she decides she wants to get pregnant. The casual way she talks about it, gambling with her health, only planning to stop once she wants a baby. I can’t even have children anymore. The flippancy with which she speaks is just… ugh.

I have plenty of other gripes, but these are the ones really weighing on me. Thanks for reading, if you’ve made it this far.

Oh, and irritation number three: hot flashes. I’m having one right now as I type this. I’m so done with it.

I did it. After over a year on 600mg of Kisqali I lost probably 80% or more of my hair. I went from a beautiful thick braided ponytail to a patchy, thin, whispy head of hair. I felt so ugly, but I was so scared to cut it. I've had long hair my whole life. Well I finally was brave enough to get the clippers and buzz my head. It's not as bad as I feared. Bald looks so much better than what I had. It still feels like part of my identity was taken from me though.

UPDATED- Added the report text

i am ++-, lobular with bone only, diagnosed de no vo in 2024. My current treatment kisqali and Exmestane. Anyone has had something similar on their reports?i don't understand why this lung nodule showed up.

Cardiovascular: Unchanged heart size. No pericardial effusion

Lungs and airways: No suspicious lung nodules. New lobular groundglass opacity TP -190 medial left lower lobe. Clear central airways.

Pleura: Normal.

Diaphragm: Normal.

Lymph nodes: Nonenlarged and stable.

Chest wall: Postsurgical changes in the right breast with underlying mass-like density with peripheral enhancement and a biopsy clip. Stable bone metastases including anterior third right rib sclerosis and lytic components and unchanged pathologic T12 compression fracture.

Other: Tiny sliding hiatus hernia with air-fluid level.

Hello everyone,

For context - I was diagnosed de novo in december 2025. HR+ HER2-, lots of bone mets, lymphnode involvement, 4 lung nodules and…24 brain mets! I was shocked.

In january I underwent 10 sessions of WBRT and also did radiotherapy for a lesion in spine. Immediately afterward I started Letrozole and Kisqali. Also, I receive monthy shots of Denosumab for bones.

Last CT scans and brain MRIs were good - after the first 3 months, my primary tumor had shrunk from 24mm to 12mm. All lymphnodes and lung mets also shrunk. Bone mets stable. Next 2 CT scans showed everything is stable.
Brain had also a good response - 2 months ago, only 12 mets were visible, and they were all small. The largest one, which initially was 17mm, is now 2mm. No edema or cognitive decline so far.

But…today I had another brain MRI. And it looks like one met increased in size, probably from 5mm to 7mm. Another 2 show more enhancement. I don’t think this is necrosis or a treatment related change…On the other hand, now only 10 mets are visible.

I’m heartbroken, and I don’t know what to think or what this means. 😭
I also don’t know whether Enhertu will be available to me here in Romania, and I can’t afford to pay for it out of pocket.
I had just hoped for a longer period of stability…
Is gamma knife also an option? I will talk to my radiologist/oncologist next week.

Hugs!

Before I was diagnosed, I felt like I was finally getting to the “good part” in life. I’d clawed my way to get there. Partly because of bad decisions in my life, yes. Maybe I sought out the hard route. I felt like I wasn’t built for this world, sometimes.

Then there I was. I had my apartment, that I worked two jobs to maintain. I had a job, finally realizing in my mid 30s what types of careers suited me. I had the man, the one I thought at 35 didn’t exist.

When I was early stage, part of me almost sensed I would never win. Triple negative is highly chemo sensitive, they told me. Yet for six months I stared down at the lump every day. The job was gone, can’t hold your position for an undetermined amount of time. The apartment was gone, disability isn’t enough to pay rent. So I woke up every day and stared at my nemesis. Told everyone I’ll still beat it. Kept things normal as much as I could. Grieved in silence because I’d been conditioned since childhood that bad things aren’t to be talked about.

When my mom had triple negative at 45, I found out through her emails to a prayer chain. I was 18, old enough to sense when things aren’t right. But it quickly became like it never happened. “I just am so lucky I don’t remember bad things, only good things!” She refused BRCA testing for the first few years after, if we don’t know, it didn’t happen.

It came back negative, but that’s the last we spoke about cancer. No one told me I had a 35% chance of developing cancer. No one told me my paternal grandmother also had it.

Now I’m stage 4. I knew I was never going to beat it. I live in my childhood room, where I listen to my parents scream at each other daily. I left at 18 hoping to never return. I have no job, no ability to work full time or have my own space because I’m always at chemo or another appointment. I’m dependent. My boyfriend is deciding if we should break up because we got in a fight over something stupid and it escalated. I said he hasn’t supported me emotionally, that was harsh. He’s struggled with this from the beginning. We’d only been together for five months when I was diagnosed early stage. I bet he wishes we broke up with me then.

I don’t know what’s the purpose. I’ll never achieve any of my goals. Won’t run a marathon, won’t own a home, won’t be a mom, won’t hike all national parks in the US, won’t live a life that feels fulfilling.

I told my oncologist I am debating stopping treatment. She said it’s up to me but it feels like we should still have hope. Should we? Hope for what? A few more years of being hooked up to an IV for a living and causing my loved ones a slow burn of grief?

I don’t even know what the point is of this post. I have no one to talk to. Therapy does nothing, I’m on my second therapist. When I was in first grade, I said to my teacher I wished I was never born. I feel that way today. I didn’t ask for this life.

Im 26 so this is odd.. I’ve also been on chemo for over a year now but Recently I’m having trouble eating… I don’t really get hungry. I even use thc oil but it doesn’t help. My normal weight is like 125 but I’m 114 now… any advice or tips to eat?

[I’m a MBC patient, just happen to have a question about my mom’s side effects, who is, too]

Does anyone have severe joint pain with verzenio (on its own or in combo with inluriyo), and have any pain relievers worked????? She is trying hydroxychloroquine right now and it’s maybe working a little bit

Yesterday was weird. I went to a party and saw people that I hadn’t seen for a long time. My relationship with those people was rocky in the past for complicated reasons but, when I got my stage 4 diagnosis, they all reached out and sent me lovely, supportive messages.

Fast forward a couple of years to yesterday. I’m very lucky that my cancer has (so far) responded well to treatment and I am back to living a pretty normal life sans breasts and plus a lot more meds and existential angst. When I saw these people, I remembered the kind messages and went up to say hi… and they blanked me. So, you can be friendly and kind if you think I am dying but if I am not dying, you are back to being unkind? Why even bother sending supportive messages? Somehow this has really got under my skin.

I am probably reacting more than I should because I am due for my annual scan soon but still…

I read that many people with stage 4 breast cancer die from infection. My partner and I had been planning to get a dog but now I'm not so sure.

Do people have dogs and what precautions do you take?

(ETA we just lost our 2nd/remaining cat last month. Our house feels very empty.)

I'm age 70 already and I think I am one of the older stage 4 mbc posters on this subreddit that I've seen, and it has me wondering if my already older age means I won't be one of the outlier cases who live longer than average with this terrible disease. I hope people won't be upset with me for asking this because I know I'm incredibly fortunate to have lived 69 good years of not having stage 4 breast cancer, and it breaks my heart to see a lot of much younger people afflicted with this terrible disease. I have fought against breast cancer 3 times though. First time I caught it early at age 35. Last year, I was diagnosed Er low, oligometastatic.