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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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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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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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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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First Scans Post Diagnosis- Mixed Results and Looking for Advice
Hi everyone, I’ve been lurking these past few months but have never posted. First diagnosed 6 years ago, did aggressive treatment via chemo and mastectomy and thought the cancer part of my life was in the rear view mirror. This September, after quite a lot of misdiagnosed back pain, I ended up in the ER after not being…
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Kisqali side effects
Hello.. I am on week 3 of the first cycle of Kisqali. I have had the dosage lowered to 400 due to gastrointestinal side effects. The stomach cramps are terrible. I have tried dycyclamine, mylanta, gas x, pepto, and other over the counter and nothing helps. I also use a low setting heating pad which does help. I do have…
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Telling people the news
I am inclined right now not to tell anyone much. My immediate family knows; my boss knows, and HR knows since I'm using sick time to supplement my contract hours to allow me to got 1/4 time this semester(I teach at a University). I haven't told many beyond that, since I don't have any outward symptoms (though I've lost…
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Monday MBC Zoom thread place to keep chatting
This is a space held for our Monday MBC Zoom Meetup members to catch up in between meetups. To join the weekly virtual support group, Mondays at 2pm ET, please register here.
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Off Topic - Sometimes Life’s Not Fair
My oldest brother’s oldest son (my oldest nephew), passed away today. In his 50s, he was diagnosed out of the blue with stage iv melanoma in October. He’d started chemotherapy/immunotherapy but it was too late. It’s devastating news to our extended family. It all happened so fast; it’s like getting hit with a wrecking ball…
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Treatment/biopsy question - liver mets
Have the answer I need - thank you!
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How long on a CDK 4/6 inhibitor (Ibrance/verzenio/Kisqali)?
I’m sure this info is buried deep in the various stage iv threads, but I’m hoping people will post their experiences and success stories here. I think the median from the initial studies was about 2 years, but obviously there is more real world experience as time passes. Thank you!
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Mothers with school aged children
I know this diagnosis stinks, no matter age or what phase of life you are in. I was hoping we could start a thread for mothers of school aged children. Edited to say: and younger...forgot to include my 3 yr old!
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Metastatic Triple Negative
Hello I am new here, diagnosed Jan 2023, chemo, surgery radiation. CT Scan October 2023, 3 months after completion of chemo showing a liver met (confirmed with liver biopsy) getting PET scan tomorrow. Looking to connect with other mTNB.