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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…
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What to expect on Gemzar?
Hi everyone! I had my first dose of Doxil last week and had an immediate anaphylaxis reation. My Oncologist said we can rechallenge the Doxil after premedicating with steroids but I am too afraid. I will be starting on Gemzar next week. I cannot find any recent postings about this drug. My Oncologist said other than…
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Cryoablation Therapy
I read this interesting article about the effectiveness of cryoablation therapy combined with immunotherapy. I might consider trying the Williams Cancer Institute if I have progression. Anyone else familiar with cryoablation?
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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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Have MBC and looking for advice re. caring for a loved one/friend
Hi everyone, I'm new to this forum. Diagnosed with Stage 4 Mets to bone, which started out with breast cancer. Now it spread to my thorasic, lumber, and upper cervical spine. I have a private FB group to share my journey with family and friends. I would also like to join a community group for some more support. With that…
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Anyone on Piqray?
I’ve been on Ribociclib/Faslodex tx for liver mets since July 2023. Recent MRI indicated several new liver lesions. I’m rather disappointed that the above tx only last 15 months. Going to start Piqray this week. I’m concerned about the side effects of hyperglycemia and diarrhea. could you please share your experience on…
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How Many Stage 4 Girls are getting SS disability..
Seems like a lot of stage 4 US citizens are getting Social Security Disability Insurance payments. So lets see how many there are! If you were denied, please comment if it was for medical issues. My understanding is denials are more "not paid in enough" issues than medical. PLEASE TAKE POLL ONCE ONLY!
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Lynparza/Olaparib Anyone?
I'm looking to share side effects or just any updates on Lynparza / Olaparib. I just started targeted therapy on Jan 12th. Aside from a little heartburn at first (helped with OTC pill), I've now started some daily Immodium, which the pharmacy sent WITH the Lynparza. Lol. I've started to just feel plain odd and very…
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Difficulty breathing
I was recently diagnosed with metastatic breast cancer in my bones- de novo at 41 years old. I have been having difficulty breathing on and off for the past few months. It feels like air hunger - every day, like I just can’t get enough air. They’ve checked me for a blood clot twice now, so that’s not it. It does get worse…
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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…