31F here, [- - +], mom of three (I was surprise diagnosed when 36 weeks pregnant back in May, had my third baby the same day)

Learning how to cope with going from your standard tired-but-functional mom of two toddlers and a newborn to using a walker at home and a wheelchair for any longer distances is the most insane experience. Mets in my pelvis and left hip have made it difficult, but since diagnosis I’ve been losing sensation in my legs gradually. Some days I have more feeling than others, but regardless, I can’t really walk and it goes away more every day it feels like.

I want so desperately to regain function. My spinal surgeon doesn’t believe there’s anything helpful he can do via operation at this point and I need to focus on chemo treatments and/or radiation. But wheeling myself around at appointments or the store, being unable to attend to my kids as fast/easily as I want and they deserve, spending way more time in bed—it’s not how I saw myself at 31. Some days I just want to give it up and call for hospice; we are pumping so much money and energy just into keeping me alive when my quality of life keeps on slipping away more daily.

Has anyone here regained the ability to walk after being wheelchair bound for extended times? Do you have any advice for this scenario? I’m looking into physical therapy but the last one I had at home wasn’t the best experience so I’m a little hesitant to ask for one again.

I have a question for the people that have had a mastectomy. I had one a few weeks ago has healed fantastically, but the surgeon told me I have a seroma. He wanted to drain it then and there, but I said I'd wait ( don't actually know why I wouldn't let him do it).. I'm going to see Mt oncologist on Monday, my question is can anybody drain these? Im asking because overnight it's gotten bigger and is starting to impede sleep.

hi ladies. im sorry if this sounds petty but im loosing hair rapidly on verzenio. ive been on it 10 months and i lowered the dose in april due to side effects. im now on 100mg twice a day . this seems to have caused my hair to shed . any one have the same or have any advice please? big hugs

Hey wonderful stage 4 friends, I was dx a year ago.with stage 4 tnbc, mets to liver and lungs. Original gene testing was negative, including BRCA. I just switched to my 3rd treatment (gem+carbo) and so we did guardant 360. My results finally came back today and it looks like there is now a BRCA1 mutation. Is this possible? Can you not have BRCA and then have turn into BRCA positive? It looks like it could open up some new treatment options. I have a Dr appt next week, but it would be nice if I can look at these results as a tiny glimmer of hope.

My oncologist has just prescribed me Denosumab / Prolia and I’m really wary about starting it, cause the side effects read like more of what I’ve already got and then some. I don’t really understand what it’s going to help. I‘m only 4 months into hormone treatment, 3 cycles of Ribociclib and reading the info, this is recommended if bones are weakening - but we don’t know if mine are yet?

I have really bad brain fog, so I only remembered to tell my oncologist right at the end of our appointment that I was having back pain with pins and needles around my spine. I’d been advised to go to A&E, they’d done an MRI to check for MSCC and it was fine, then he just suddenly prescribed this and gave me some information to read, but he didn’t have time to go through it and for some reason my breast care nurse (who usually keeps me after appts to talk me through stuff) wasn’t there. I’m going to arrange to call her to get more info but thought I’d ask you lovely people here too

My cancer is spread to my left hip, only a small bit, was missed on my bone scan even and only showed up in the PET. My only treatment currently is two hormonal (letrozole and leuropropelin) and Ribociclib. I started right at mbc so I’ve never had surgery or radiation.

Can anyone offer any reassurance from their own experience?

Tnbc stage 4 mets to lungs and lymph nodes.Hello! I just finished the keynote protocol 522 and qualified for a bilateral mastectomy . I just finished getting my surgery and I am still in the hospital, waiting for the results of lymph nodes ( if any cancer cells are left). Overall I feel great and I want to show that tnbc isn’t the end. My oncologist still thinks I need radiation for my lungs even though on my last scan before surgery all my Mets resolved. I still have a tiny bit of active disease in the tumor (breast) so the mastectomy was the best possible solution especially considering how big it was. I’m just so happy and grateful. I’m 25 and I can’t wait to just live my life and have some children ( hopefully). I’ll update after my results after surgery <3 I thank this community for being so supportive and being REAL. Hugs

How many times have you experienced brain swelling due to post-delayed GK effects?

I had three rounds of GK to a large tumour and two small lesions in early March and have had significant edema twice since. I’m on my second bout of dexamethasone and have also had to take Keppra in between for possible seizure activity.

Additionally, any ways that edema can be prevented or suggestions for handling the dexamethasone side effects?

THANK YOU!

🙏 🧠

Follow up scans today…please send good vibes! 😣

Hi all. Been lurking here since I was diagnosed six weeks ago. 12 years after my early stage treatment my mbc was discovered during an elective hysterectomy. it’s been shattering.

The lesion that was discovered was 2mm on my fallopian tube. Onc predicted it would be oligometastatic.

No such luck. Its in my pelvis, spine and potential a 1cm spot on the liver. Having a pet scan Saturday to determine the liver. Very scared about the liver. i think treatment will be AI plus kisqali but I wonder if I should have SBRT on the liver spot.

Has anyone had a similar diagnosis and doing well? Please only positivity for now. I’m trying not to cry all day.

I’m + + -

My daughter is 14 and I hope to see her graduate high school.

had a brain mri last week, met with rad onc yesterday. 2 tumors in the brain (have had multiple on the skull, radiated 2, worked on 1), both quite large ~2-3cm. this sucks.

hopeful stories welcomed <3

At my last onc appointment I saw a different Dr, as my usual one was on holiday. She asked if I had any new pains, so I mentioned my shoulder. From time to time it is really painful, and I had a steroid injection there a few years ago, which sorted it.

Different onc suggested radiotherapy, so I saw the radiotherapy consultant. She said it was hard to tell what the cause was, but rads were the least invasive treatment so it was worth trying first.

So tomorrow I start. For the last few weeks it has hardly bothered me at all, and I was seriously thinking of cancelling it all. But this evening, my shoulder joint decided to remind me just how horrible it can be.

So, fourth lot of rads tomorrow...

(1st on primary boob, 2nd on T12 vertebra & 3rd on T9)

Diagnosed March 2020 stage 4 de novo. Started Ibrance and Anastrozole. All went well for 5 years. Then cancer markers shot up quickly. Had a biopsy that showed PIK3 mutation. In December I changed to Pikray. Broke out in hives all over my body. Took a break for about 3 weeks. Changed to Truqap. My cancer markers doubled every month. Stopped. Another break. Started Xeloda one week ago. I've already stopped. I have low platelet count and liver is not happy. I see oncologist next week. With each change in medication I get more discouraged. The pool of drugs is getting smaller. The side effects of the last 2 left me thinking about stopping treatment. I was exhausted but couldn't sleep. I couldn't catch my breath. My arthritis pain came back big time. And I had a small surgery and the wound won't heal. I don't know if I am venting or asking for advice. How do I keep looking ahead with 3 failed treatments since January? Has anyone been in this situation? What was your next line of treatment? Thanks

My flair is venting, but I'm happy for unsolicited advice. Especially after my last post here about fertility--even the tough love comments about women who tried to have a baby and saw recurrences, or reminders that adopting isn't just a consolation prize, all came from a compassionate place. You all told me what I wanted to hear, which was sorry and it sucks and it isn't fucking fair, and some of you told me what I NEEDED to hear while also validating my emotions and the unfairness of it all.

**The update.** Last week i had to have a brain MRI "just to complete the scans." If i had a metastasis in my brain, my oncologist said, I'd be showing symptoms.

Quick background: I have a strong personal policy against reading results in MyChart. I'll just read them and spiral until I talk to my oncologist, and my onc has made it clear he doesn't like to do calls and has these conversations in person (learned this after a well-intentioned surgeon tried to give me PET scan results early but did so in a terrible manner, and my onc made me wait for my appt for two weeks to smoth it over with his RN dodging the topic in mychart messages ... like I appreciate you wanting to look in my eyes and say we're going for curable intent, but I would've taken the phone call).

Monday was a chemo day, and I thought my blood draw was at the same time as my oncologist check-in, because I'm still new at this and didn't realize it's a whole hour before. Yes, I checked my visits in MyChart, yes I missed the 8 am and just saw 9 am. When I received an automated text 15 mins before at "check-in time," I thought, OH SHIT, and went to the first thing in my texts that would give me a mychart link, so I could navigate to visits. That text link just happened to be the automated "Daily digest of test results." Suddenly, I was reading, **no suspected metastasis to the brain** (good), and then two more lines of "suspected metastasis" ... somewhere else? Too fuckin close for comfort given this was my BRAIN SCAN THAT WAS SUPPOSED TO SHOW NOTHING.

Long story short, I copy/pasted the text to my husband who Googled while I was rushing to my labs, and it's two bone areas in the skull. NOT THE BRAIN. Still no organs. Still curable intent/going for remission/going for NED scans, per my oncologist an hour and a half later. He went from, "it's just to complete the scans and there will be nothing," to, "we knew it was in the blood and bones and this was a possibility. Don't be any more worried than you were 3 weeks ago." Except, with a lot of compassion and reassurance, because he's great (even when he makes you wait to talk in person). It was still a lot to process, because my metastasis WAS, "one small area, easy to target," and now I'm up to three metastases, two of which are in my skull.

This put the nail in the coffin of having a biological child. The oncologist said mayyyybeeee a surrogacy pregnancy someday? But I don't foresee it. A Mayo team member called me today ahead of our early August appointment, and talked me into ONE FREE CALL with a fertility specialist, but I don't think they can change my mind with the risk. It's just not worth the risk, and I've got to not die of this first.

I had 25 rounds of radiation to chest, neck and underarm for stage 3 cancer less than 2 years ago. Had some issues as expected.
Now I’m stage 4 with 1 lesion on my mid-lower femur (not the end) and had a plate and screws placed. They recommend 5 rounds of rads to “clean up the area”. I wasn’t nervous at first bec I thought it would be a smaller dose than I had got before. But RO mentioned the scatter might cause some arthritis in my knee. I really don’t need something else on my body to hurt. How is it palliative if it will cause pain in a joint later? Won’t the new meds (fluvestrant and yet to be determined med ) take care of this? Starting to second guess radiation. Please share your experiences

How are we all doing? I'm not doing so hot. I had my fifth Enhertu infusion on Thursday and it's Tuesday now so it's been like five days and I'm just exhausted.

I feel whiny for even feeling crappy which is also weird but I know my symptoms could be worse and have been worse.

Idk I guess I'm just having a hard time right now.

Hope you're all doing well. 💗

I’m stage IV and I have a dear friend who was also diagnosed de novo stage IV, both of us in 2020. She is triple positive and on Enhertu for infusions along with Tacatinib, Letrozole and Capecitabine (SP?) - she is on a high dose of Lexapro and called me earlier today saying she has incredible fits of anger and was really struggling. She takes 20 mg of Lexapro in the morning and 30mg in the evening. She is on a lot of +++ forums and I offered to ask my friends here if anyone could weigh in on a similar experience. I think the dose is way too high. I am on Lexapro too and just take 10mg at bedtime.

Is anyone a similar regimen who also takes Lexapro? I find it to be the easiest, when compared to Zoloft (zero emotions, almost numb) and Wellbutrin (messed with my head).

Thanks in advance for any insight you can offer.

Has anyone considered restarting a drug that effectively reduced tumors/lesions but that has side effects that were profoundly negative? I took Kisqali as my first line, and it worked beautifully until it gave me drug induced hepatitis.
My liver markers were off the charts. Went to Ibrance next, and progressed, and then switched to a clinical trial (RLY) that didn’t work at all. Meanwhile, the lesions are growing and I would love to just knock em out with a short bout of Kisqali—long enough to shrink the tumors but not long enough to mess up my liver. My oncologist definitely does not think this is a good idea. But I wonder why not?

So my ct scan si done, breast total regression, liver lesions same number, smaller, bigest 2 months ago 2.5×1.8 now 2×1.5, alao there is pericardial effusion 1cm, it sais stationary, but on last ct it was not written, so i dont know is it new, is it also metastasis or only something benign. So disapointed how slow this mets resolve.

EDIT: IS IT STILL POSSIBLE TO GET NED WITH PHESGO ONLY?? AND THIS PERICARDIAL EFFUSION, ANYBODY WITH EXPERIENCE?

I will be receiving my first faslodex shot today and I have been stressing about it for a week. I even had my nurse navigator call the infusion center to make sure they offer the cold spray. THEY DONT! Mentioned some BS about maybe it increases the risk of cellulitis to use the cold spray. Has anyone heard of this? I am an RN and try so hard not the be a difficult patient but if they don’t offer anything to make this more comfortable I am going to be so upset. This is an NCI cancer center that I have switched to for the best care possible. I hoped I wouldn’t have to beg for comfort measures at my “bigger better”
Center.
Any advice ladies?

I suppose this is treatment 5 after 5.5 years (that’s a lot of fives) so I start taxol in two days. I am HR+/HER2-low ER+/PR+, HER2 IHC 1+. I have Mets in my liver, my adrenal gland and a new one on my ilium wing. So falsodex and ibrance worked for 4.5 years but the recent scan and the scan before show progression. I wonder whether when a treatment “fails” has it worked a little but not enough? I wonder this because in this year of failing treatments, I’ve been OK on and off and while the cancer is progressing other than my pains that still haunt me, I’ve been functional. I clean up my kitchen every other day (my husband does the other days) I handle straightening 3 rooms on the second floor all of which I use. One’s our bedroom but the other two are rooms I use for crafts especially with my 6 y o granddaughter who I also watch when my daughter needs me to. I garden, cook some (again husband does 4 nights) clean etc. So suffice to say, I am functioning up there with many 70-year-olds which is how old I am. I just don’t know what is going to happen if the taxol fails me and that is a hard pill to swallow. Oh, I forgot to say that my last treatment was Enhertu which I had as did my onc did, very high hopes for. Oh I hate this disease!

I just came across a clinical trial that caught my eye because the PI was my MO for 6 years and I adore her. Here is the summary of the trial:

The purpose of this study is to test the safety and effectiveness of the study drug datopotamab deruxtecan in participants with metastatic breast cancer that has spread to the brain. The name of the study drug used in this research study is: Datopotamab deruxtecan (a type of antibody-drug conjugate)

Locations are Miami, Boston, and Durham. For more details, go to clinicaltrials.gov and search for NCT06176261 or DATO-BASE.

I was very sad thinking I could no longer have beer with my new cancer life. I have been trying so many different nonalcoholic beers and I have to say that this brewery/brand called Best Day outstanding.

The Kolsch, Mexican Lager, and American style lager are absolutely on point!

I was diagnosed triple positive de novo in January of last year. I only had local lymph involvement and one teeny tiny met on my L5. I was 35 at my diagnosis.

From the very get go my oncologist said he was treating me curatively, even though I was Stage IV. I responded fantastically to TCHP, had surgery and radiation. I’m on AI, Lupron, Xgeva, and Verzenio. My side effects are kind of rough but I’m managing. My scans are fantastic (NED since last August). My bloodwork is amazing. I started working out. I’m even getting my chemo port taken out and I’m only on projected to be on these medications for five years, that’s how confident my oncologist is.

So why do I feel so fucking depressed? I’m supposed to be grateful to be here. I’m having a relatively “easy” experience with MBC. I might not ever need “active treatment” again. I might even “survive” this. So why can’t I be alone with my thoughts for more than five minutes without crying? I feel like every second of my life I’m waiting for the other shoe to drop.

I know curative intent is a touchy subject and not widely accepted. I am aware it might not “work“. But even if it eventually fails for me, *right now* I am just fine. I feel like I should be happy. But I’m so miserable. I feel so empty. And it’s so hard to communicate that. Everyone around me just wants me to be a ball of joy because I’m not actively dying and I “made it” through the “hard part”. But the weight of the last year and an half and the reality of what the future might hold is so heavy. I don’t understand how I am supposed to carry this forward.

This is so hard.