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Getting scan results today, scared
Getting scan results of bone and CT after 3 months of tx. Nothing really to compare them to, since I had PET and MRI for dx. I'm scared, and need reassurance. Thanks.
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tnbc mutated to hormone positive?
Has anyone had their tnbc mutate to be hormone positive? I was originally 99% er+ and 1% pr+. Then I was tn. Now I'm 95% er+ and 75% pr+! My understanding is that breast cancer usually becomes less hormone positive, not more…I'm not sure what to think…
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Battling triple-negative, non-hormone-sensitive metastatic breast cancer
Hello dear community, My name is Yvonne, I am 56 years old and from the Netherlands, and I am currently battling metastatic, triple-negative, non-hormone-sensitive metastatic breast cancer. After undergoing treatments with capecitabine and paclitaxel, my oncologists have identified Trodelvy (sacituzumab govitecan) as a…
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Scanxiety and accuracy of scans
Hi all, I am right now having tremendous scanxiety about two scans I had on Tuesday. One was a nuclear bone scan, the other was a CT scan. They were supposed to reveal progress (or progression) after 3 months of Fulvestrant and 300 mg of daily Verzenio. I never had a bone scan before. The stupid technician came in after it…
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Kisqali (Ribociclib), Faslodex (Fulvestrant), Femara (Letrozole) - is anyone on this combo?
After many years on Faslodex and Femara, my onc has decided to add Kisqali to the mix as my tumour markers are rising to the 100s although my ct scans appear stable. I haven't noticed anyone posting about this particular combination. I'm very nervous about the side-effects and I'd love to hear how people are doing. Is it…
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What’s on your bucket list?
I am currently working on my bucket list and it got me wondering what everyone else wants to see and do. My list below in no particular order. Go parasailing (done May 2018) Go on a cruise (done Feb 2019) Go to the Bahamas (done Feb 2019) Go to Jamaica Go to Hungary and Ireland See the Northern Lights See Hepcat (Ska band)…
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Skull mets
I was told back in the beginning of 2021, after a brain MRI, that I had skull mets to the calvarium. I wasn’t offered any treatment for them. I’m assuming because I had no symptoms. Lately I’ve seen a number posting about skull mets and having SBRT. Am I assuming if I had no symptoms and I’m covered from skull to femurs in…
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"What a revoltin' development this is."
When I was very young, my grandparents and I would watch a TV comedy, "The Life of Riley." The protagonist would turn to the camera at some point and declare, "What a revoltin' development this is" when something untoward had occurred. It always brought a big laugh from the soundtrack. Several weeks ago, I had a bone scan…
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Mastectomy after dx with liver Mets stage IV
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Curious about time to recurrence for Lobular (ILC)
Hi there fellow lobular thrivers, I was basically a De Novo Stage IV as I had progression shortly after I was diagnosed when I had just started neoadjuvant chemo. But I’m curious how long it was for others between their first diagnosis and recurrence to a distant (non-breast) metastasis. My theory is that the statistics…
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Experimental Inavolisib Seems Promising for Certain Metastatic Breast Cancers
Experimental Inavolisib Seems Promising for Certain Metastatic Breast Cancers Dec 7, 2023 If approved, the medicine may be an alternative to Piqray for treating certain cancers with a PIK3CA mutation. Read more…
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Piqray users, what is your experience?
I just started on Piqray and Faslodex after Ibrance and Arimidex stopped being effective. I am weakly ER positive and PR negative, so I can't say it was a complete surprise that at some point that would occcur. I would be interested in hearing from others how you are doing on this very new medication. So far, the only side…
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Argh, close to panic again
Getting some super strong scanxiety. Insurance denied PET (I guess because the first one didn't reveal any bone involvement, according to the denial) so they won't allow a PET. My MO wants a CT and a bone scan. The bone scan looks for c in bones, and the CT-well, you know what it does. I went from 1 scan scheduled for…
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Starting new medication (Xeloda ) today I live alone and worry what to expect.
Hi everyone I am starting on Xeloda today 7 days test run. I live alone and pretty nervous on what to expect. Can you share plese what I really need to pay attention to and what would be the signs if any to rush seek medical attention. Thank you .
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MBC and lowered immunity
My white blood cell count is down, neutrophils are down… not that I am sure what that even means, but I do know that my immune system isn't doing so great. Three head colds since December, and they linger and get harder to shake. I now mask up everywhere I go where I'm going to be in crowds. I take public transit to get…
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How long with Ibrance?
Hello, I was diagnosed with MBC ER+/HER2- (several metas on bones, nodes, lung and liver!) in December 2019 (at 40 years old) and received Ibrance + Anastrazole + Zoladex+ Xgeva + Orocal as treatment since the diagnosis. It seems to work very well because only the meta on left bone shoulder is still active (at Pet Scan). I…
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Need MO (Medical Oncologist) recommendation (in SF Bay area)
Hi all, I was diagnosed with stage IV in Sept. 2023 in Taiwan by a Taiwanese MO from whom I am receiving my hormone and targeted therapies. I continue to work until the third round of treatment on 12/22/2023 when I took a leave of absence from work. Because of the stress from work become too much. So, I asked my MO to…
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Elacestrant/Orserdu
1QT.2024 My TM CA-15-3 went up. I am very nervous. I just started Elacestrant its my 2nd week and i am getting mixed messages here about that it causes spikes in tumormarkers activity for some patients and not so much for others. I was taken off my previous meds Kisqali+Letrozole on Jan 5th after PET scan that showed new…
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Dizziness on verzenio or fulvestrant
Hi all, anyone get dizzy or faint while on either? I got up to pee last night and got super dizzy heading back to bed. Found myself on the floor of the bathroom after fainting 😲I’ve never passed out in my life so it was pretty scary. I was only out for a second or two, the dizziness went away quickly and I didn’t hurt…
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Impacts from radiation
My apologies if this has already been discussed, but I’m having a major issue with the breast that had the original lump/lumpectomy. I finished radiation years ago, but my breasts are now at least 2 sizes different. The radiated one is much smaller, like at least 2 cup sizes smaller. How do you deal? I have inserts, but…
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Stage 4 with bone mets to mandible & T4 spine
Hello, I was diagnosed in December 2022 with what they thought was stage 2. After Pet scan it’s now stage 4. Mets to T4 spine and mandible. I’ve had one round of TCHP chemo and feeling pretty good. My oncologist hasn’t said what his plan for the bone Mets are other than adding Zometa. I’m wondering if the chemo will help…
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Chemotherapy for Stage IV
This thread will be for the discussion of chemotherapy as it relates to Stage IV survivors
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Capecitabine not working
what’s next after capecitabine (xeloda) failure? I am ER+ and HER2- . Took ibrance and letrozole for 5 years NED. Then tried Fulvestrant with no luck and now capecitabine first scan shows progression. What’s next for me? I’m scared.
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Post mastectomy pain after starting tx for mets
Hi, this is my first post. I was first diagnosed 6 years ago, had a mastectomy and took 5 tamoxifen for 5 years, finished last April. I was diagnosed with stage 4 in November, extensive mets to bones and liver. I've been taking femara and kisqali for a month now. It's been a hard adjustment. I have had significant…
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Xeloda response time?
I have been on Xeloda now for about 5 months. Recent PET scan shows a "partial" response to a liver lesion, but still not great. I see my onc next week. Very worried about what he will say. How long does it take for this drug to achieve maximum effect?
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Jane McLelland protocol / COC protocol for STAGE IV members ONLY
Hi 😊 Just wondering if anybody in here is doing the Jane McLelland (COC) protocol? If yes: For how long and did it have any effect? I’m seriously considering it but need to hear from other MBC’s whether to do it or don’t. Thanks in advance and hi from Denmark
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What does oncologist do for you when there is essentially no regimen left?
Hello, I am not really sure how to appropriately phrase this question, essentially what does your oncologist do for you when there is no option left, beside suggesting clinical trial? Maybe this is a better way to put it, Beside suggesting clinical trial, how does your oncologist decide on your next regimen when all…
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MBC to bones
Hello girls 🙂. My mother today was diagnosed with MBC to her spine and hips. I read on the web that life expectancy is 19 to 25 months. Is that true? Sounds so little. I read some of your stories and I see that many of you have already live much longer. My mother soon will be 76. I love her so much, and she is so though…
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Enhertu start
Hi everyone, I'm starting a low dose of Enhertu today, been resisting for a while as I'm more than done with hair loss and any more reduction in quality of life. Side effects don't seem to be consistent with most patients I've observed from research, am very trepidatious. Any thoughts? Thanks
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Hair loss and Kisqali
I have been recently diagnosed with Stage IV metastatic breast cancer after a year being stage II. I started Kisqali last week and was told I would only have hair thinning. I am loosing chunks of hair. Would love to hear if anyone has experienced this? My oncologist told me none of her patients had to get wigs and only had…