r/LivingWithMBC

This is my first time with enhertu. I’m very sick with her2 plus estrogen plus breast cancer. Chatgpt is saying first line would be tratusamab perjeta docetaxol or paxlitaxol. My doctor started me on enhertu. It has been very harsh on me. I am exhausted and the stomach pains have been really bad. l feel like perhaps the side effects from this enhertu are too intense for me. Ive eaten very little.

Does anyone have experience with both of these treatment options? The traditional chemo route or enhertu? How long before results? Were the results successful. The side effect differences? Was any easier to deal with? Please let me know your experience. thank you.

Update on my cancer: I got back from the doctor's. My scan is stable compared to my PET scan last month. However, looking at one of my liver spots, it was a bit dense and slightly larger (about 2 mm) than it was a few months ago. I have decided to change treatments, and my doctor thinks this will be the best course. The new treatment is very similar to the clinical trial drug. It's an anti-tumor treatment plus an FDA-approved treatment (there's an oral medication or oral with a once-a-month shot). I will be going in sometime next week to sign papers and start right away.

This is the trial. If anybody is part of this, please reach out. I am curious how it is going well for you.

https://clinicaltrials.gov/study/NCT07029399

Guys I have lots of upper stomach pain on enhertu. They just called me and said that’s not a side effect of enhertu and the doctor knows everything about the research. And they can’t give me any prescription for it other than anti nausea. Then I sat there and ran around long denying conversation with the nurse about it telling me how it’s not a thing from enhertu and there’s nothing they can do until I kept asking and asking if it’s acid or there’s some stomach pain medication me having to be more aggressive. She said if I think it’s acid she can give me something for that finally. please is this normal? I told her chatgpt said it could be and offered a list of medications. She said chatgpt isn’t reliablue. I ask surely the doctor could give me some prescription for upper stomach pain without me having to go through all that. Is this normal.
please someone.

Hi all,

Didn’t know how to update my last post, so here we are,

Dmx yesterday, it went fine, no lymph nodes were taken, they couldn’t tell which one was the sentinel node because of the scar tissue post lumpectomy, surgery took about 4 hours,

Pain is manageable, was super dizzy last evening and very nauseous, but after nausea meds I was able to have some dinner, that I ate very slowly and ,I’m better now

Definitely felt the love and the prayers, thank you

How many weekly taxols did you recived, i am at state where i would leave everything because my doctors plan on 24+ weekly taxols? I am so tired, my ct scan showed total regression in breast and 70 percent regression in liver after 13 taxols and 4 phesgo, they said that i am not even on half way in taxol.... is this some standard or what

hi everyone, I am 29 and diagnosed de novo on March 2nd. numerous Mets to bones. I got diagnosed when my baby was 8 months old. I just finished my first round of kisqali, my white blood cell count is really low. I had bloodwork done again today to check my white blood cell count after my week off of kisqali and they are still low and the same.

My oncologist wants me to hold treatment for a week and then check again.

I am feeling so discouraged by my white blood cell count and it not rebounding in my off week! I just am feeling sad about it. I so badly want treatment to work as we all do.

Just wanted to share some good news. I got the call today with brain MRI results. My "innumerable" brain tumours are gone! No longer visible. None of them! I am in shock.

I had whole brain radiotherapy in January 2022 & it kept things stable until December 2024 when I was told brain & lung tumours were growing again. I started Enhertu in January 2025 & all tumours in my body gradually reduced but brain was just stable which I was delighted about.

Last MRI was about a week ago & they cant see anything. My team are amazed!

I hope this gives hope to somebody. Enhertu is tough but it works!! I cant stop crying with happiness 🙏

I've just started my journey (diagnosed a little over a month ago). I'm 29 years old with mtnbc which is a bit of a headfuck. I was just wondering what you guys listen to while you get your chemo. Bonus points if its nerdy. At the moment ive got lord of the rings for fiction, the rest is history and unruly for nonfiction. Sorry if its an inappropriate place to ask, listening to these helps me escape a bit, and this sub has also felt safe

I've had to get up for 1 reason ot another all week & tomorrow I don't have anything so I can sleep all, it's the little things you know. No kids home no appointments. Some days it's the little things like knowing I can loaf all day tomorrow

Update: got a slow morning but out of pain meds(restocked now), so my hip pain put a stop to the sleep by 8 still pretty late. And tomorrow I can sleep in or all day if I want again but Friday I pay with a10AM appointment, I usually try to schedule after noon only but this was made for me with my latest hospital discharge. I don't like waking up before 8since I usually sleep in 2 blocks8-4/5 then until 8 to get 7+ hours of sleep. Then I move like a snail between pain - negative energy levels. At least I sleep now. There was almost a yearafter my stroke where that wouldn't happen no matter what I tried, gotten on a better track there. It was torture to not sleep for that period. Now it's pain that cuts sleep short which luckily some oxy helps greatly.

I just had a almost throw up situation of my own creation, I didn't put food in my stomach before pills, I was running late for my morning meds so I was just swallowing them down and then the bigger horse pills were all that was left, the gagging on them started me retching, never actually threw up just came right to the edge without the relief it brings. Why is it so traumatic? Throwing up is never pleasant but there is something special about dry heaving that takes me like an hour to get past. My daughter wasnt phased at all. Used my moment of weakness to ask to do a craft with clay. I guess I'm glad this isn't affecting my kids at all but also dude, kid this is not the moment.

Does anyone have experience RLT? It’s been used for years in Prostate cancer and neuroendocrine tumors, and now it’s being studied in breast cancer patients. Has anyone taken part in any of the studies recently running or had discussed the therapy with their oncologist?

Just looking for some advice if anyone experiences anything similar.

I’m on Trodelvy / Keytruda 2 weeks on and 1 week off. I was diagnosed with liver and bone mets. The Keytruda attacked my thyroid but they said it’s very common so about a month ago they put me on levothyroxine to combat my thyroid. I’m on a daily prednisone steroid since diagnosis and the only other med I take is gabapentin for my nerve damage in my upper chest.

Since I started the levothyroxine I’ve been having stomach bloating to the point of where I am uncomfortable if I eat or drink. My clothes all feel very uncomfortable due to the bloating. It goes away after a few hours but it’s a very hard bloating. I’ve been bringing it up to my nurse every week but she says keep an eye on it as it could just be a combo of all the medicine.

My bloodwork is still all “normal” my CA 15 3 remains at 22 since March (I was diagnosis in December and it was a lot higher). My alkaline phosphatase has remained between 90-120.

I guess I’m just fearing that my labs aren’t picking it up and that it could be liver progression which terrifies me the most. Everyone online keeps saying “once it hits your liver it’s all over” I’ve heard that more times than I can count. Unfortunately I was diagnosed with liver mets from day one.

If anyone has any insight of anything else the bloating could be from id love your suggestions. I am increasing my water intake a ton to try and help. It’s made a small difference throughout the day. I sent a message to my doctor asking for an endoscopy if it continues because I’m definitely terrified

Thank you in advance and sorry for the lengthy post

Wish me luck, I’m going in today,

Currently in the waiting area after being injected with the radioactive substance to trace the sentinel lymph node,

Nervous and scared, I was hoping they wouldn’t touch the lymph nodes since my pet scan was clear, but, oh well,

I hope this is the last time I’m told I have a cancerous tumor , as this is my second recurrence,

First diagnosed stage 4 two years ago exactly, er 30%, a couple of small liver mets, went with curative intent, had AC/taxol, then Oophorectomy, been on PARP inhibitor and estrogen blocker since,

First recurrence, 15% er+ September 2025 (thought I was heading towards triple neg for sure), had a lumpectomy in October , back on same treatment, clear pet scan in December aside from some inflammation at the surgery site,

Second recurrence picked up on mri in March, 50% er+, 15%pr+, pet scan showed everything else was clear, so I opted for a double mastectomy to reduce the burden of disease and hopefully not have to deal with this anymore,

I’m so worried of metastasis elsewhere popping up after this, I really hope not hear about more popping up after having been clear since chemo ended,

Send me prayers, positive thoughts, good juju, send it all, everything you have , I’ll take it all ❤️❤️❤️❤️❤️

I had a bilateral oophorectomy Salpingo last Monday. I chose to have it done so I can stop Zoladex.

Got back pathology today (didn't even know they were going to do pathology), and the same cancer was in those ovaries and one fallopian tube. Surprise!

The surgeon's receptionist assumed this was the reason I had the surgery in the first place. Poor thing when I told her no, I had no idea. She felt bad.

My husband assures me that being stage 4 means it was already there, it hasn't just come about or been missed. But I don't know.

Has anyone else had such a fun surprise?

Hi all, I start Trodelvy three weeks ago as my fifth line of treatment. I wasn’t super confident because Taxol and Carboplatin (fourth line) failed after four infusions.

So far my AST, ALT and Bilirubin have gone down. Bilirubin has always been in the normal range, but had started to creep up. Tumor markers went from literally off the chart — >3,000 — to 2,300. Still high, but I’ll take a 700 drop!

I did end up in the hospital for four days after the second infusion. Neutropenia, anemia and neutropenic fever. I got a blood transfusion and a ton of antibiotics. All counts are still low, but we’re good enough to get treatment yesterday. My oncologist reduced the dose by 25%.

The scariest part is that if not for a fever, I would not have gone to the ER, but my blood counts would have been just as bad. Going forward, I’m going to be extra careful about washing my hands (which I’m already careful about) and wearing a mask anywhere there’s a crowd.

Really hoping the Trodelvy keeps working. There’s a clinical trial I might qualify for in July, but the liver mets need to shrink a bit. Last CT, they’d started growing into each other and radiologist couldn’t tell where each started or ended. 😬

Hi, Has anyone had a reduction in all other areas (for me, lung, lymph and even primary tumor) but the bone met (T12) grew a bit/worsened? I wonder what this could mean as I've never had a biopsy of the bone site before, but I have had them for lung and breast (ER/PR pos, Her2low).

So let me give some context. I didn’t really like my medical oncologist the first time around but I kept her because I was only going every 6 months and didn’t really need much in terms of care. Well now that I am facing stage 4 I am starting to wonder if I should get a second and possibly even third opinion and shop around a bit. I am within reasonable distance of 3 different major cancer centers. 2 of which are designated comprehensive cancer centers (my current center being the one that isn’t). She just doesn’t have very good bedside manner. I had a pet scan on 5/4 and she has yet to call me and talk to me about it. The only interactions I have had have been with her nurse via my chart and even after I asked for her to call to answer some questions I haven’t heard from her. Is that abnormal? Like I get that she wants to order more testing but I have so many questions and feel like she just doesn’t want to talk to me. The unknown is the worst part and the fact that she can’t even take 5 minutes to talk to me is really rubbing me the wrong way.

Anyway, if you were in this situation would you consider switching? Am I being unreasonable by expecting a bit more concern from my doctor here?

Not sure what I'm looking for here, reassurance, people who get it. I'm in a bad way last 3 weeks has seen 2 hospital admissions and generally a down turn in my health. The 2 hospital stays, were bc I wasn't breathing. The first they said pneumonia- got pumped full of antibiotics and felt loads better after a few days on supplemental oxygen. Then discharged and a few days later right back in the same spot, now it's not pneumonia the consensus is congestive heart failure. They put me on dieuretics to drain fluid in my lung sothere is less pressure on my heart, they also see what looks like a big thrombosis attached to one of the valves, ok increasing my anti lot meds and do a brain MRI as a precaution that there are no leaks or anythingthat uppin the gdrugs could make serious. MRI results back, great no leaks or any reason to hold on treatment. So I'm on a heptin drip24/7. No big, whatever.noh shit incidental MRI finds 3 very small but totally new brain mets- no symptoms and still small, largest is9mmto 2mm. Prelim radiologist talk gamma knife might not be recommended over something like whole brain radiation, well that seems like a huge escalation in scariness.

MOs concussion is there is just too much damn cancer, which I'm not arguing with id love for there to be less cancer.suposed to be starting xeloda as soon as I can get it, it's in specialty pharmacy insurance hell right now my Dr office is working to get it through and they generally do a good job at it. It takes awhile though

So within the last 1minrhs I gone from being independent, getting myself around the house doing some basic human stuff like showering etc, being able to be fully present at dinner/evenings for family timeto having supplemental oxygen on all the time, barely being able to get up and dressed in the morning, I been having increasing rr hip pain that we haven't found a good solution for except oxycodone which I have to take a bit of to knock the pain out but then I'm pretty loopy and want to sleep, most of the time.

Anyway so here I am with all the bright shiny new diagnosis or issues,:weak as a kitten, doped up & un focused, congestive heart failure that is well controlled for now at least until I become slightly less dehydrated and it's ba ck.again. I'm trying to take it one day at a time. Today was the first in awhile Iamaged to get up& dressed so small improvement there.

Cancer is continuing to grow and now spread to scary areas, something it hasn't done even if I was flying through lines of treatment, this new development is probably the biggest thing right now. Trying to get to a more zen place of make it until you're on xeloda for a few weeks then see what things look like, I'd be excited to get back to taking care of myself and maybe putzing around my garden a bit a.nd being able to be present for family time& my kids.it kind of feels like I'm waiting for a hail Mary with the xeloda. And if that's not the case my options are limited and it might be time for hospice, which my husband doesn't want to talk about at all. Like if he plugs his ears& la las or will dissapear and not be a problem anymore. So I'm focusing on getting affairs in order & finally getting our trust finished and official so I know my kids are protected at least monitarily wise. Trying to figure out what if anythingmore I can do for them that would be meaningful, birthday card for milestones or letters for big life milestones. It all seems a bit daunting so mostly I nap.

How does someone go about making the hospice decision, I'm thinking if there is no hope of anything really changing for the better it's probably time for me, my state also has a MAID law which strangely gives me a lot of comfort. I won't have to sit around as a doped up lump of flesh waiting to die.

Sorry for the rambling it's rattling around in my head & I needed it out. I'm tired of having to pee every 10 minutes, maybe hospice has a way for me to pee without having to get up to go, it's tiring.

It’s called vepdegestrant, while I am not on this clinical trial but I am using this with another clinical trial drug.

So far the side effects have been minimal.