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Special Meetup: Managing the Emotions of MBC at a Young Age Wednesday, Jan 29 2025 at 1pm ET
Join us to talk about the emotions and unique challenges of being young with a metastatic breast cancer (MBC) diagnosis. This special meetup will be facilitated by Kelly Grosklags, LICSW. When: Wednesday, January 29, 2025 at 1:00 pm ET Register here. We look forward to seeing you!
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Traveling with MBC - Inspire others with your vacation experiences and tips!
Hi everyone! We have a new content highlight on Traveling With Breast Cancer, and would love you to share your tips, experiences, memories, and advice for those with metastatic breast cancer who are considering traveling, but might not feel well enough, think they don't have the energy, are concerned about risks of travel,…
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MBC Zoom Meetups: Register Here to Share Face-to-Face
Please join us for one of our Zoom Meetups -- register by clicking the links below: VIRTUAL MEETUP | Do you have metastatic breast cancer (MBC; also called stage IV)? Register: Mondays at 2:00 PM EST, Tuesdays at 8:30 PM EST and Wednesdays at 4:00 PM EST VIRTUAL MEETUP | Under 45 with metastatic breast cancer Register:…
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Exercises For People Living With Bone Metastases
Studies show that exercise is safe for people with bone metastases. Research also shows that exercise can improve sexual health and offer many other benefits for women diagnosed with metastatic breast cancer. In this video, Sami Mansfield, a certified cancer trainer and founder of Cancer Wellness for Life, demonstrates a…
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Ringing of the bell. A perspective from someone with MBC. Please share yours!
Thanks to Jaimee for sharing her perspective! Please share yours below! Does your treatment center do this? If so, how does it make you feel? Share your thoughts.
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Important Stage IV Topics and Links for Stage IV Newbies
Here are some helpful resources if you've just been diagnosed with stage IV breast cancer, also known as metastatic or MBC. Join our Zoom Meetups for MBC! Anyone with MBC, register here: Mondays 2 pm ET Tuesdays 8:30 pm ET Wednesdays 4 pm ET Younger With MBC, register here: Thursdays, bi-weekly at 1:00 PM ET Great tips,…
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MBC Caregiving Partners Virtual Zoom Meetups every other Tues at 4pm, ET
Hi All, Reminding you that we offer a free caregivers meetup for partners of someone with MBC every other Tuesday. If you are a caregiver, or have a partner who you think could benefit, please share. We meet every other Tuesday at 4pm, ET. People need to register here to participate:…
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The Losses We Feel After a Metastatic Breast Cancer Diagnosis
The Losses We Feel After a Metastatic Breast Cancer Diagnosis Dec 1, 2023 Grief counselor Kelly Grosklags helps Melissa Jenkins moderate a special Virtual Community Meetup on the losses people feel after being diagnosed with metastatic breast cancer. Living with metastatic breast cancer can bring many losses: not being…
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Talking to Children About Metastatic Breast Cancer
Talking to Children About Metastatic Breast Cancer Sep 8, 2023 Kelly Grosklags, a licensed clinical social worker and grief counselor, helps Community Director Melissa Jenkins moderate a special Virtual Community Meetup on talking to children about metastatic breast cancer. Finding the words to talk to children about…
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Gamma Knife Surgery for Brain Mets: What to Expect
We asked our awesome member, @illimae, to share her first-hand experience with receiving Gamma Knife surgery for brain metastases in order to help others feel more at ease with this intimidating treatment. We are grateful for Illimae's willingness to share and we hope you find this helpful! Gamma Knife for Brain Metastasis…
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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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Zoom Meet-up for Those With MBC: Place to keep chatting
This is a space held for our Zoom Meetup members to gather in between meetings for updates and support. Join our Virtual Meet-ups! For those with a diagnosis of metastatic breast cancer (MBC; also called stage IV) Register: Mondays at 2:00 PM EST, Tuesdays at 1:00 PM EST, and Wednesdays at 4:00 PM EST Young (45 and under)…
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Abemaciclib Verzenio for Stage IV
Luckylegs and friends on Abemaciclib - I am bumping the Verzenio discussion in the hopes that more people have started abemaciclib. We need to get a community going. I have not started abemaciclib but it is on my short list. Like many I am very interested in how people do on this treatment do, both as a monotherapy and in…
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All about Xeloda
I will complete my first cycle of Xeloda today (2 weeks on; one week off). I have already noticed some signs of HFS on my feet. Sometimes they are red and feel hot. I've had some minor skin peeling, but not any blistering. The heels are the worst (the most sensitive) and it is uncomfortable to walk. I hope I get to see the…
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How are people with liver mets doing?
I continue to be very scared once I found my liver mets progressed after having to go off doxil. I am hoping to find some support in alleviating my deep seated fears by hearing other stories of people living and dealing with liver mets. My onc says I have such a petite frame (105) that an enlarged liver will definitely…
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De Novo Stage IV
I'm wondering if there is a topic just for de novo Stage IV. I'd like to know how people found out. Did you have symptoms that led you to the doctor for an answer? Was it found out of the blue when you had another issue and how was it found? Are there others like me who have never shown it in your breast but only where it…
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How long have you been Stage IV?
We have a thread of what age you were diagnosed at Stage IV, so how about "How long have you lived with Stage IV". Also please state if you were Stage IV from the get go. I'm asking for this information in hoping to have MANY more years than the 2-3 I was given and to give hope to those newly diagnosed with Stage IV. 1…
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ELAINE 3 trial
just wanted to share with all those who have ESR1 mutation a comment from one participant. Looks like it’s working so there is hope for an approval. This is from a different site and a patient named Irit. Hi everyone, I promised an update on the clinical trial I participate in since March 2024, so here it is. The trial is…
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Sad News on our dear DivineMrs.M
I received this pm today. Though we all understand the inevitable, each loss still remains painful. I have known Camille for over a decade so this one hits particularly hard. “Hi everyone, this is Camille’s husband posting. I just wanted you all to know that Camille passed peacefully on January 2. My son and I were with…
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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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Are you currently (or have you been) in a Clinical Trial?
I am about to start a clinical trial and am wondering about the experiences of others. I'm feeling a little rocky and at sea, because I've been in the care of a wonderful oncologist for the past three years, and I knew without a doubt that his prime objective was the same as mine - to keep me stable and maintain a good…
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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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Bone Mets Thread
I've started this thread after suggestions that it would be useful. Mod Note: We have removed the original link as it is no longer viable. At one of our member's' recommendation we are offering this link as a resource for you. https://youtu.be/YpFfLrITfEI
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This sucks - Osteonecrosis of the jaw
After 10 months of bisphosonates I have been been diagnosed with ONJ. 3 weeks of mega antibiotics, everything else except letrozole stopped until this is resolved. A bottle of liquid morphine to add to my collection. (Resisting because it feels too ‘cancery’, if you get my drift.) And more ‘activity’ detected in my bones…
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Anyone on TRUQAP?
Hi all, it looks like I'm going to be starting TRUQAP soon as an alternative to Piqray. However, it looks like TRUQAP and Piqray both come with some pretty nasty side-effects. I was hoping T would be easier than P. From what I've read, it sounds like Imodium AD may become my newest friend. Yuck! I was hoping for an easier…
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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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Ibrance (Palbociclib)
A bottle of Ibrance came in the mail today. I will start taking it tonight with Femara. Hoping that others starting on this drug will join me here to talk about side effects and how to avoid or treat them. So far, I've been warned about low white counts. I run very low as it is, probably because of my extensive bone mets.…
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Kisqali side effects and timing
I was diagnosed with stage four NBC earlier this year and just started a combination of anastrozole and Kisqali. I am three weeks on with one week off. I have experienced some persistent nausea, but most concerning is my serious fatigue. I’m wondering if this improves over the months as you continue with the Kisqali? I’m…
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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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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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A place to talk death and dying issues
This post is for those of us with concerns and issues about death and dying to talk about them. IF YOU CANNOT HANDLE IT, THAN GO TO A DIFFERENT POST PLEASE. We do not need people telling us to live life or to hear that other people have lived a long time, we have concerns. We are living life and would like for our…
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Anyone starting brand drug, Enhertu?
I have had growth of tumors while on current treatment. My onc and I have decided to try new treatment, Enhertu (FDA approved 12/20/19)! Wondering if anyone else out there is trying or was in trial? Julie
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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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HERCEPTIN and/or PERJETA Threads
I am currently on Herceptin and Perjeta with Zometa every three weeks. Would love to hear from others who have been on this targeted therapy and how well the treatments have been working for you..
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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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Ribociclib/Kisqali with Letrozole - Any one on this combo?
I am starting this new forum for all those who are on this newly approved drug combo. I started on Kisqali/Letrozole combo 6 weeks ago and so far it has been tolerable. Letrozole gives me joint pain and low back pain. My oncologist has asked me to take this on alternate days. Would love to hear from others about their…
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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…