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On Anastrozole. Should I start Zometa? Had one Bone met that's gone! Tamoxifen instead?
HISTORY I just started this MBC journey 7 months ago. I had one small bone met in upper sternum and some possible mets to soft tissue in mediastinum and lymph nodes in same area. Only the sternum was biopsied. ER+ (90%), PR+ (30%), HER2+. I started on HP protocal and anastrozole the end of July 2024. No chemo. End of…
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peritoneal carcinomatosis
I am looking for others who have peritoneal carcinomatosis who would like to share their stories and treatments.
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Multiple Organ Mets and on Kisqali/Ribociclib (3+yrs)
I always hear amazing stories from those with dx’d with bone mets de novo on this drug. Curious to hear from those with multiple organ mets or were dx’d secondary who have done well long term on the Kisqali/Ribociclib combo. Where were your mets, and how long have you been on this treatment?
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Husband's anticipatory grief
Big sigh. My dear husband is not coping well with my worsening disease. I've had progression of my lobular MBC, previously in bones and now to peritoneum, omentum, GI tract. I am finally going to have a laparoscopy/biopsy next week and then begin weekly Taxol. My mood is better now that these things are finally scheduled!…
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23 Years of Stage 4!
Today is the first day of my 23rd year after being diagnosed with Stage 4 MBC de novo. The past few years have been very challenging since my body has been protesting against so much chemo, but I am doing my best to hang in here. Sending love to all of you! Denise
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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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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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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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Her2+++ ER- PR- novo stage IV
I’m her2+++ ER-PR- novo stage IV, had multiple tumors in both lungs. I started in 08/2022 with Taxol Herceptin Perjeta. Stopped Taxol after 18 rounds and still continue every 3 weeks with Herceptin Perjeta. December 2022 after I completed Taxol all my tumors were gone so for the moment 2 years NED. Anybody longer than 5…
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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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Brain Mets Sisters
Starting this for a friend. Edited to explain that the friend was imbell who was feeling overwhelmed by wbr. She helped us all by starting this. Shes in peace now. See you in the clouds, imbell.
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Moving on from Ibrance to Orserdu
After 7.5 years on Ibrance & Letrozole I had slight progression. A blood biopsy was ordered and I remained on I/L. I had developed great pain in my shoulder and this was found to be cancer. Blood biopsy reported ERS1 & PIK3CA mutations. I completed 5 rounds of radiotherapy to the shoulder and 2 days later on 29th of March…
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Our treatment histories
Hello, So far, I've been a silent member only, so this is my first post. I have been following many discussions regularly, and found this forum an incredibly helpful and encouraging place. I was wondering if we could have a thread to collect our treatment histories? Which drugs we've been on, how long we've been on each,…
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Celebrex/Celecoxib
I'm just curious as to who else is taking Celecoxib. I have arthritis but am really taking it as an anti-inflammatory that I hope will delay progression. I've been taking it daily since last June but today a Physician's Assistant refused to renew my prescription. Her reasoning was that my kidney numbers on the GFR test are…
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It's OK - No Surgery, No Chemo
Hi Community I haven't found this topic yet, so here's a start (if it's too long, I apologise in advance): I'm in Stg IV with the HER2 cancer growing from the right breast, and first discovered a grape-size lump in Aug 2018. I couldn't get a biopsy until June 2019 (SSA had cut SSI funds), directly before which my PCN said…
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MSK will no longer be covered by Anthem Insurance
We just received a letter that my cancer center, Memorial Sloan Kettering, will most likely no longer be covered by our insurance Anthem (Blue Cross Blue Shield) starting January 2025. Is anyone else in the same boat? Has anyone gone through the same experience with their insurance cutting off coverage for their medical…
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My boobs keep trying to kill me
Hello Sisters! It’s been awhile since I’ve last checked in, but am in need of advice/recommendations/encouragement. Background – Diagnosed with de novo ILC (ER/PR+, HER2 - ) with innumerable sclerotic bone mets in 2018 at age 50. This was found on a routine mammogram – I was totally asymptomatic. Had a R mastectomy and…
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Seattle -- looking for info./advice re: MBC treatment options/ locations ....
Hi all — my beau and I are likely to be moving to the Seattle area next spring (exact area not decided yet). I am looking for info. / advice regarding where to get MBC treatment and tips re: transportation and other practical advice. I am generally aware of Fred Hutch, but again am looking for practical tips about getting…
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Enhertu for HER2-Low and -Ultralow Metastatic Breast Cancer
Enhertu for HER2-Low and -Ultralow Metastatic Breast Cancer Dec 12, 2024 Dr. Aditya Bardia discusses Enhertu for metastatic hormone receptor-positive, HER2-low and -ultralow breast cancer and explains those terms. At the 2024 San Antonio Breast Cancer Symposium, Dr. Aditya Bardia, director of the Breast Oncology Program…
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Imlunestrant Plus Verzenio: New Treatment Option for Certain Hormonal Therapy-Resistant Breast Cance
Imlunestrant Plus Verzenio: New Treatment Option for Certain Hormonal Therapy-Resistant Breast Cancers? Dec 20, 2024 Combined with Verzenio, this new oral SERD may be a good option for advanced-stage breast cancer with an ESR1 mutation. Read more…
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Adding Ibrance Stops Growth of Metastatic Triple-Positive Disease for More Than a Year
Adding Ibrance Stops Growth of Metastatic Triple-Positive Disease for More Than a Year Dec 18, 2024 Progression-free survival was 15 months longer when Ibrance was added to standard treatment. Read more…
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Side Effects of Tucatinib (Tukysa)
Hello Everyone. I am wondering how others are dealing with the side effect of diarrhea while on Tucatinib. I am taking the Immodium, with mixed results. I am wondering how others are navigating living your life, going out, etc. while dealing with the threat of diarrhea. Thanks for your feeback.
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Oligometastatic Prognosis
On another forum, somebody posted this abstract, and I want to share it with you all - with comments. Since I am being treated as a true oligometastatic patient, this topic interests me. I think it is becoming more and more accepted as a real possibility, that a very small subset of women with mets can live long lives. It…
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Stage IV NED crew : lets support each other
Well, I'm now a stage four NED girl, and would like to connect with other stage four people who are also in remission. Could this be a thread for supporting us all through the complex world of stage four remission, check ups and routine scans, anxiety, side effects, ongoing treatment, expectations from family and…
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BRCA2 negative and now positive
Hi I posted this in Genetic testing but thought I would post her too. Hello, I was first diagnosed in 2015 with early stage IIb. I had genetic testing done at the time and was negative for all mutations including BRCA1 and 2. I had a recurrence in 2022 and I had the Caris test done on the tumor and again no BRCA found.…
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Verzenio didn't work for me
Hello, I was treated for my 2nd round of breast cancer from 2022-2023. I went on Verzenio/exemesthane regimen in May 2023. I was supposed to do two years on verzenio, however I was just diagnosed with MBC. I had a lymph node biopsy done because I had 3 swollen lymph nodes in the retroperitineal region show up on a PET…
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Tumor marker results and changes truqap
I have stage iv metastatic breast cancer in my bones. Multiple sites. I was on ibrance. Now on Truqap. . My tumor markers jumped 25 points recently . My oncologist does not seem very concerned. What kind of jump have you had that the oncologist was concerned about?
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Newly diagnosed stage IV
I am newly diagnosed. I am also a year into a systemic sclerosis/scleroderma diagnosis. Looking to connect. I am angry and in denial after the past five years of fighting diseases to now be diagnosed with this.
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Stomach issues & severe weightloss
Hi all, I’m hoping that one of you has had similar issues as my doctors seem stumped. I was initially diagnosed in 2011 and had a double mastectomy and chemo. In 2019 I was diagnosed with metastatic cancer in my bones and lungs. I was on Ibrance and Faslodex for almost 4 years. I gained 20 lbs due to the swelling in my…
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Stage 4 with peritoneal carcinamatosis (sp)
After 14 years my cancer came back with a vengeance. I didn't want chemo again but they convinced me to try abema and an aromatase inhibitor. It's not too bad so far. My biggest problem is that I live with a narcissist and I'm tired of fighting for my needs or even my wants. They say this regimen could give me 2-5 years. I…