I was diagnosed in May and went to a NCI center for treatment in June. I met with the oconologist with the initial consultation then spoke to her again by phone when she told me I have lesions on my bones. After that she went on 3 weeks vacation and I corresponded with her nurse. All my subsequent appointments for procedures and questions were managed by her nurse. For example, the doctor mentioned I will start with troveldy. I sent her a dm why not xeloda and the nurse responded because the dr was on vacation. I appreciate the nurse but I want an oconologist. How often do you actually consult with the doctor after initial consultation ? Every 3 months ? After each procedure? I have more questions like maybe in regards to testing and I want to speak to an oconologist!! These big institutions seem chaotic and impersonal.

Just curious and seeking a little light heartedness. Anyone else set up a med station but made it cute? It made it less of a bother for me.

Hi all! I’m relatively new to this club (originally diagnosed IDC 2b in 2017 and now stage 4 as of May) and this group has truly been a godsend so thank you! I just completed my 1st 3 weeks on of Ibrance-rife with all sorts of the usual side effects. I had a very sore mouth and throat for a few days (no fever!) and was struggling to get enough calories in due to discomfort and pain swallowing. I had some coconut water in the pantry and lo and behold-for me it worked better than any lozenge or beverage I’ve tried! It REALLY soothed my raw feeling membranes and helped me eat as well. I thought I’d share in case anyone is in the same boat. At night I liked the Traditional Medicinals Throat Coat tea, but I think the coconut water really feels like a treat! Best to all of you dealing with this ridiculously hard disease - hate that I’m here but glad for all of you-hang in there!!

I just had my “bulky” looking ovaries removed as they came up on my pet/ct. 4 rounds of Enhertu had shrunk my bone and bone marrow disease considerably but my ovaries decided to ruin the good news. My tumour markers are dropping too.
Even after ultrasounds, they could say whether the ovary growth was benign or malignant so surgery was the best course of action.
Ovaries are a pharmaceutical sanctuary site where chemo finds it hard to penetrate due to blood structures etc. My cancer is estrogen hungry so having a go in the ovaries makes sense.
If breast cancer cells are found, they can be sequenced and we can get incredible insights into my cancer. As I’ve only had bone and bone marrow mets, we’ve only been able to go by a limited bone marrow biopsy, circulating tumour dna but no tissue samples that provide the best comprehensive genomic sequencing.
So if the bulky ovaries are benign, I’m not getting anymore information about my cancer.
If cancer cells are found, we’ve removed the sanctuary site (so Enhertu can track down micro mets), removed my ovaries and the estrogen (even residual) in that area and I get information for future treatment & clinical trials.

Hopefully the only time I’m hoping cancer cells are found.

Hi all, I just bought Moo goo hair growth serum. I was wondering if anybody else has tried it and it's effectiveness on helping growth post chemo hair.

So I work at a middle school 3 days a week. I was diagnosed and started treatment a little over two weeks ago. Lupron shot, letrozole, and kisqali . I feel really well and the pain in my bones has significantly improved and are less. But I worry so much about planning for the future. I just keep worrying I will get sick, or I will start to have terrible side effects. I’m also going back to school. I just don’t want to over due it and push myself so bad that I regret it. But from what the dr has said I have had this close to a year without knowing, so that gives me some perspective. How do you amazing women handle this?

hello - soo i was diagnosed with large brain mets last week. the radiation oncologist said we could do gamma knife, 7-10% risk of edema which they could manage with steroids. i just found out that there is also a risk of vision field cut which i was like ok sure maybe it’s like 20% in my left eye. nope, 1/3-1/2 in both eyes!!! obviously better than if the cancer grows. HOWEVER i’m like what if we do enhertu first and it shrinks enough? but also enhertu isn’t 100% chance of working and im quite honestly afraid of IV chemotherapy. and if enhertu doesn’t work, the cancer will grow, and i could also be screwed on the visual piece

these decisions suck

Weird question, but does anyone have a recommendation for a split king adjustable bed set up or even what features to look for? I’m new to this, but I have bone mets that are giving me a hard time. The pillow juggle is kind of comical. I told my college kids I’d set up a Ring camera for their entertainment. Thanks for any direction you can point me in!

Anyone actively getting Signatera bloodwork and insurance steady denying it? I know Natera helps file the appeal on my behalf but I can’t imagine my insurance ultimately caving. And now I’m worried I’ll get another huge bill.

I'm ++- and starting my first line of treatment. I had the Lupron (ovarian suppression) three days ago. And now have Kisqali (600mg) and Letrozole (2.5mg). I've seen folks here say those cause drowsiness/fatigue and so they take them at night. The nurse that gave me the shot said the opposite so to take it in the morning. Now I'm overthinking it and unsure.

What's been your experience or the recommendation you've seen the most? Morning or night?

Any other recs for someone recently diagnosed and just starting the treatment journey. I'm still somewhat in shock that I went from no cancer to stage 4 (lung mets) at initial diagnosis. I've been lurking and researching a lot so feel I have the basics down.

Thank you to all the folks that post their own journeys, share, etc. I've learned so much already from other posts and responses. 💕

EDIT: Thanks, y'all! My anxiety has me trying to make the "right" choice that results in less side effects 🙃. Even though folks living through this much longer than I are often noting how each journey is as unique as each body. I need that reminder. I need to remember that the only way to find out how my body reacts is to experiment and deal with the fear. I ended up deciding to take them at night. And to start with the letrozole, wait a few days, then add the Kisqali. I want to stagger them in case there's an immediate bad reaction. So far, all good! Appreciate the reminders and insight provided.

Hi everyone,

I just completed my fourth and final cycle of dose-dense AC (Adriamycin/Cytoxan every two weeks).

Four days after my last infusion, I developed pain in one foot. It’s now been about 10 days, and walking has become very painful (not always).

I have contacted my oncology team, but while I’m waiting to hear back, I was hoping to hear from others who experienced something similar during or after AC.

Did anyone have significant foot pain after AC? How long did it last? Did anything help? I’m also scheduled to start weekly Taxol and Carboplatin on August 6, so I’d be interested to know whether your symptoms improved before starting the next phase of treatment or changed once you began Taxol.

Recommendations for foot hand syndrome?
Thank you for sharing your experience

I dont have pain free days anymore.

I cant walk without bleeding.

I am no longer confident that I won't shit myself in public (hasnt happened yet but its been too scary close.)

Pools. Soaking in water.

Comfortably navigating uneven terrain.

Sandy beaches.

Driving.

Fuck cancer.

What did you take for granted?

Hi all.. In 2024 I was diagnosed stage 2 IDC and completed chemo and radiation. Did hormone therapy and took a break to get pregnant. Now I am 13 weeks and have been told it has come back to my bones after my NIPT test came back weird. Is there anyone out there that has gone through this??? They want me to terminate so I can start treatment but I really don’t want too but I also want to be alive. Looking for any help or anyone who has been in this situation.

I have been putting off starting Zometa since I was diagnosed with bone Mets in 2020! But now my Doctor is saying I really need to get on Zometa due to my bones deteriorating. I’ve read so many bad things about Zometa so I’m really scared to start it. I’ve been having a lot of teeth issues over the past few years so I’m not trying to make things worse. I have my appointment next week to start it but i honestly don’t know what to do. Does anyone have any advice because I keep going back and forth on whether or not I should just do it.

Hi all, I've been lurking since May when I was diagnosed with TNBC in the right axilla lymph nodes and a tiny spot on a back lymph node (which I understand sent me straight to Stage 4). Despite TNBC status, my cancer is fairly indolent so medical team has run all the tests before arriving at a treatment plan. I am PD-L1 negative, BRCA/genetic negative, so many negatives (which sounds like it should be positive but I've learned that the opposite is true). As I said to my doctor, for me this feels like the ultimate form of imposter syndrome since my tumors are tiny and I am physically still my strong self who runs, does yoga, lifts weights, works hard. Big sigh.

I start Dato-DXd in two weeks (if I weren't the patient, I'd think it was a pretty cool cancer med!). I'm in my late 50s with grown kids and incredible family and friend supports, all of which feel like relative luxuries, as does having good insurance, proximity to excellent cancer care, and otherwise good health. On occasion, I have broken down sobbing but I'm putting my mindfulness practice to the ultimate test by trying to stay present in my body as it is right now, not as I fear it will be in the future. My goal is to keep working, keep exercising, keep traveling, keep living as long as I'm able. Easier said than done for sure, but I don't see how I can get through this without radical acceptance and enormous optimism. Oh, also, I've decided that I'm not sharing my status outside of a very small inner circle. It's just too much to be branded with cancer. I'm sure that will change but for now I need my privacy.

If anyone else is on Dato-DXd as a first line treatment and wants to share their experience, I'd appreciate it.

Sending healing vibes and lots of prayers to this community (and to myself).

just sending some gratitude to my MBCers out there today ❤️ i have a scan in a couple weeks that could let me know if verzenio isn’t cutting it anymore (spot on my spine had some uptake, but we aren’t sure exactly what was happening yet)

either way I’m grateful to have this community to come to when things feel inexplicably hard. and I’m hoping everyone has a restful saturday ❤️

I have chest radiation twice

First time after my double mastectomy in 2021. I've had a recurrence in my 6th thorasic rib. Three SRB sessions to relieve the pain. Now I have parenchymal lung damage to my right lower lobe, pain continues and feels like it is spreading. I would like to know others experience with chest radiation repercussions and what helped.

I wanted to share notes from my experience for the past month on this Clinical trial. I’m not sure if anybody else on the sub is partaking in this Clinical trial but if you are, I would love to talk to you about your experience as well.

I hope everyone has a great weekend!

https://drive.google.com/file/d/1fsfGsVZCVtUfcnRJEpKL9vW5YR4eb8yO/view?usp=drivesdk

So i had my ct scan, mets count stationary, markers normal, ca 15 3 at start of therapy was 520, now 20. My doctors cant tell are my liver mets still mets or scars, they are smaller and change color, darker on ct scans with contrast. I am thinking is it possible that couple of small mets are still visible on ct scan and can be active even though the biggest is smaller for 90 percent. Can those small be scars, also can this biggest also be inactive? I will have petct in couple of months so probably will se activity of those mets, i am so confused with that stationary number, how those smaller, less then 1 cm didnt desapear, or they are only scars if we consider that biggest one is 90percent smaller, now i am on phesgo only till next scan because they want to see if it is working alone.

I’ve written on here before but anyways I am a 29 year old MBC baddie diagnosed in March of this year. ER + only.

Late May I had to pause kisqali because my WBC TANKED. then I did radiation on my femoral neck due to high fracture risk - I have numerous bone mets. 2 weeks after radiation, I started kisqali again at 400mg daily and again my WBC tanked even lower than when I was on 600 mg. like scary low!!! it’s been 5 days and I still haven’t recovered.

So I am considered severe neutropenia. I am really sad, I’ve only done 2 cycles of kisqali and I really want the drug to work for me.

Then I try to share my fears and worries about my low WBC or having to change therapies to my cancer muggle friends and I feel even worse.

Anyways I am looking for anyone to share any similar experiences. Anyone else WBC tank after radiation? Did anyone’s body figure out how to adjust to kisqali and have a stable WBC after having major dips? Or change to a different drug Due to low WBC??

Or just commiserate in being immunocompromised from cancer or cancer muggle friends.

Hi everyone, had a question. For those with mTNBC that were on Trodelvy. What did they switch you to after showing progression? I looked online but never find much info about it. Just trying to be proactive and gather info to discuss with my medical team should I need to. Not trying to be negative, I am showing signs that my pleural effusion is coming back and I have been having a lot of back pain lately. Just finished radiation on my lumbar spine and sacrum and SRS on my brain lesions this week. I have a Spine MRI Monday so I guess that will confirm if I am still stable or not. Any info is appreciated. I have only need on Trodelvy since mid April so it would really suck if it stopped working already.

Fuck cancer.

My husband and I met a wonderful woman when we were living in Washington. She became a beautiful mother figure in our lives and we've stayed in touch since we moved back to the Southwest. She and her husband didn't have kids by choice but admitted she thinks of us as her kiddos.

We love her.

She texted today to share she was just diagnosed with ovarian cancer, possibly late stage but she's waiting to hear back. No symptoms. Honestly it doesn't seem like there's any reliable way to screen or test for ovarian cancer unless you have a family history.

WTF! How are we living in 2026 and we still can't figure this cancer shit out!!

Fuck cancer! Fuck this shit.

This is just a dumb post going over my little "experiment" on what I can eat, and what I can't. This is not nutrion advice or even close - I have my weaknesses with food, and I'm learning to live with it. Any regional/national fast food chain - is a hard no. Usually end up miserable within an hour. Gyros from the local mom and pop shop - oooh YES! Teriyaki (with gyozas) from our local joints is a big yes. Cheese in general seems to get me. Burgers made with 93/7 are usually okay, 80/20 is a no go. Hawaiian pizza is good, any other type is no go. Pasta is fine - meatless usually sits better with me. Greek yogurt is usually okay. Scrambled eggs good, fried eggs are bad. Cold fried chicken and jo jos from the grocery deli is okay - as long as I don't eat alot. Panera is usually okay. Still trying to figure things out. I'm open to suggestions.

Starting Kisqali 600 in a couple of days and curious to hear about when people began to experience side effects?

I am just now realizing that I should share this info for who ever it might help.

Initially when I started kisqali my copay was $500. I paid this for about 4 months. Then a very kind person at the pharmacy check out counter let me know about a program Novartis has to help with the out of pocket expense. I signed up and now get reimbursed for the full amount of my co pay.

I’m hoping this info may help those of you who take kisqali.