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Feelings and insights about Breast Cancer Awareness Month as people with MBC
October is Breast Cancer Awareness month, which can be an overwhelming time for many women and men affected by breast cancer, especially for those with a metastatic breast cancer diagnosis. We'd really like to have everyone discuss here what you think and feel approaching this month. Thank you ❤️
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18 plus years now
I like to post here occasionally, this forum helped me a lot early in my dx. I am living well with stage v for over 18 years. I am triple positive and on herceptin and Aromasin. For the last nine years I have had no signs of cancer. The last time the cancer was active it was in my bones and lungs. I know stories like this…
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Ixempra
After failing Kisqali/aromasin, abraxane and halaven, I’ve now begun my journey with Ixempra. I get treatments once every 3 weeks. Tuesday was my first tx - in between meltdowns (due to report of progression), I slept a lot. Until that night. I was up all night long. I’m sure it was the steroids in the premeds. Wednesday…
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I was just now dx with skin mets
Hi, I've not had good news since forever—since suspected recurrence in August 2023 anyway, looks like I won't be getting any either. I had some red raised places — not bumps, not nodules, that would get red, then go away, etc. that appeared Nov. 23, the same month I was dx with St. IV. PET scan didn't show this. CTs-four…
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Liver met
Frustrated and angry. I've had MBC for 4 years now. I did really well on Verzenio/abemaciclib and was told I had NED in July. I just got my CT scan back and it shows a probable tumor on the liver. PET scan and liver biopsy coming up. My tumor markers have been rising too. Lucky to have had 4 good years so far, but just 3…
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Kisqali Exemestane
Hello, Anyone on a Kisqali and exemestane combo? I'm just finishing my first cycle--after 8 rounds of paclitaxel was getting to be too much for me, my onco and I decided to try this oral chemo. Noticing my hair thinning, which is extra upsetting as I cold-capped with the paclitaxel expressly because I did not want to lose…
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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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Bone Mets diagnosis 18 mos, lesions on liver on CT last week
Hello, my wife was diagnosed with stage IV breast cancer with bone met about 18 mos ago. She is currently on kisqali (400 mg), and Letrozole with monthly Zolodex shots and Zometa every 4 months. On her most recent CT (last week) the report said she has 3 lesions on the liver, 14 mm, 14 mm, and 15 mm. Still awaiting report…
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HER2-Positive Brain Mets Respond to Enhertu
HER2-Positive Brain Mets Respond to Enhertu September 12, 2014 The targeted therapy Enhertu (chemical name: fam-trastuzumab-deruxtecan-nxki) helped control areas of metastatic HER2-positive breast cancer in the brain, according to results from the DESTINY-Breast12 study presented on Sept. 13 at ESMO 2024. Read more…
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leptomeningeal metastasis
so I have been diagnosed with them (lesions in posterior cerebral fossa on cranial nerves and in spine). chemo changed for Enhertu trying to stave off a disease while the preparations for intratecal chemo via Omaya reservoir going. Looking back in the hindsight there were symptoms of it in August, just not visible on…
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patty
Does anyone have info on Patty? Haven't seen her here for awhile.
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Pik3ca E110del mutation? it's rare
anyone have a PIK3CA E110del mutation? I do. it's rare, like 1 in 4000 Pik3ca mutation is E110del. it kept me out of a clinical trial because I didn't have one of the top 10 mutations. arghghgh. we're going to try Piqray anyways. arghagrhgargharghghhgh. Same thing happened with my ESR1 mutation as well. I guess I'm…
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Peritonial carcinomatosis - help
Hello everyone! Today I learned from the CT examination that peritoneal carcinomatosis appeared. I am desperate because things were going well! I am waiting for encouragement and opinions from those with this type of breast cancer metastasis: peritoneal carcinomatosis. Has anyone tried HIPEC therapy or PIPEC therapy? I…
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Any stage IV surviving 5+ years ?
When you look up stats for stage IV they’re dismal, yet I continue to see lots of longer term survivors on this site. Some were given a year or two. Would love to hear how many are there and how life’s is for you. I’m coming up on three years and just failed with letrozole. MO says plenty options sti
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How do you lift your spirits, even briefly...
…when you receive troubling news about your tx, health, etc.? How do you comfort yourself and make yourself feel safe in spite of troubling labs, scans, etc.? I ask because it seems lately my check ups have been disappointing and although I try not to have any expectations about any of the tx I'm getting, I have to have…
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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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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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High creatinine, high ketones?
I am not sure how common these side effects are, but I've been experiencing them so I thought I'd check in and see if there's anyone who has already experienced these and can maybe shed some light on what I might expect. My meds include kisqali and letrozole. Not sure what might be causing the issues. TMI time: I noticed…
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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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Rectal issues
Well if you've opened this thread you either have them too, have nothing better to do, or maybe you're just curious. Amidst all the sadness on here lately and the sisters with serious issues i am hesitant to post this comparatively trivial complaint. But being as I am in bed on my iPad with a painful hemmoroid I have…
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Ischmetic stroke
Hi, I am on Palbociclib 125mg and Exemestane since last 5 years. I have mets in the bones which are under control. I also have X-Geva once in three months and have monthly shots of goserilin. I recently had Ischmetic stroke. All the cardiac diagnosis like echo, Holter test was ok. Also brain and neck angiography is also…
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Recent diagnosis
TNBC stage 4 Ductal metastatic 6.9 cm tumor in right armpit breast tissue, 3 cm on right breast, clavicle, possibly groin left side. Palliative taxol chemo & immunotherapy since the large one in my armpit is protruding out & would grow outside of my skin. 6 mo-1.5 yrs is what they gave me. Diagnosed 6/2024. Just finished…
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Not responding to Verzenio after some months: anyone switch to Kisquali? Help please
Hi all My tumor markers dropped for the first few months on Verzenio/Fulvestrant, and now are climbing again. Scans didn't show progress last month but I'm terrified. Did anyone have better response switching to Kisquali and if so, what was it and how were the side effects compared to Verzenio? Verzenio and I are getting…
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Has Anyone Had TEMPUS Blood Testing Done?
I’ve been stable on Xeloda since 2020. Recent ct/bone scans show a couple enlarged paratracheal (neck area) lymph nodes (everything else appears stable). Today I had a PET scan ordered by my onc to further investigate what might be going on. When I was at the onc last week, I also had blood drawn for TEMPUS xF testing. Has…
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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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Tamoxifen and breast tenderness
I finished chemo (12 cycles) May 30th. IDC, Mets to liver, ER and HER2 positive. Still on herceptin and perjeta. I’ve been on tamoxifen for 3 weeks and I’ve had breast tenderness since I started. It comes and goes. Anyone else?
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Vegetarian Diet Offers Physical, Mental Benefits for Women With Metastatic Breast Cancer
Vegetarian Diet Offers Physical, Mental Benefits for Women With Metastatic Breast Cancer Jul 24, 2024 If you have metastatic breast cancer, a whole-food, plant-based diet may help you think and feel better. Read more…
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Which Type of Radiation Is Best for Painful Spots of Cancer in Spine?
Which Type of Radiation Is Best for Painful Spots of Cancer in Spine? Jul 11, 2024 Stereotactic body radiation seems best for easing pain caused by spots of metastatic cancer in the spine. Read more…
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Exercise Boosts Sexual Health in Women With Metastatic Breast Cancer
Exercise Boosts Sexual Health in Women With Metastatic Breast Cancer Jul 9, 2024 If you have metastatic disease and want better sex, exercise can help. Read more…
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Enhertu Beats Chemotherapy for HER2-Low and -Ultralow Metastatic Breast Cancer
Enhertu Beats Chemotherapy for HER2-Low and -Ultralow Metastatic Breast Cancer Jun 17, 2024 Enhertu seems better than chemotherapy for metastatic breast cancers with even the lowest detectable levels of HER2. Read more…