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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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Young with MBC
This is a thread for those 45 and under who have been diagnosed with metastatic breast cancer, and facing the unique challenges associated with receiving this diagnosis at a young age. Please feel free to discuss here, share your story, and support each other! --Your Mods
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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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MSM (Methylsulfonylmethane) -Sulfur supplement
Is anyone else taking MSM? I started this week because I read that it can help with joint pain, inflammation, hair loss, nail damage and diverticulosis a new issue that has come up for me. I'm taking it in powder form, dissolved in a large glass of water. So far it is vile! I can taste it in my mouth all day. I'm just…
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Elacestrant (ORSERDU)
Starting this topic to share info about the new medication elacestrant. Elacestrant (ORSERDU) was recently FDA approved for ER+/HER2- MBC for patients with the ESR1 mutation. Just before it was FDA approved, I was able to obtain the drug through an expanded access program (thanks to WeninWI for the info!). The expanded…
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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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Mammogram if metastatic
Do you gals with metastatic disease still have annual mammograms? I can't understand why they would be necessary with ct scans every 3 to 6 months. Is the Dr just drumming up business for the hospital? What does your MO say? I haven't had one since 2017 when I thought I was all clear and 2 months later found cancer in my…
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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…
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Verzenio/Letrozole to Xeloda?
Curious whether anyone else has had Xeloda as second line monotherapy after the Verzenio/Letrozole combo? 18 months on that but suddenly many more bone mets/lesions grown bigger so switch has been recommended by onc.
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Stage 4- Docetaxol (Taxotere) Treatment
Last week, I started a new-to-me IV Chemo after progression while on Doxil. I have searched the Stage 4 posts but not finding much so wanted to have a thread to post my “story” to allow a place to ask questions as well as posting experiences, hoping to help others if they move to Docetaxel, too.
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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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Anyone 5+ years with liver mets and ER+ Her2-?
I just have to ask. If you had liver mets at diagnosis of mbc, and you are ER positive and Her2 negative, and have reached five years already, please raise your hand. Most of the 5+ years women I see here on BCO are either Her2+ (the Her2 drugs are quite successful), or they started with, and may still have, only bone…
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Liver mets: resection, ablation, SBRT, Y-90, anything else?
I'm interested in who has had local treatment for liver mets and what was your experience and outcome. I've been talking about this with my onc, and he seems a little hesitant. I have my regular appt. for a 2-mth MRI of brain and followup with rad onc. I plan to ask him about the possibilities. I think that some of the…
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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!