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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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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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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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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 2-3:30 pm ET Tuesdays 8:30 pm ET Wednesdays 4-5:30 pm ET Younger With MBC, register here: Thursdays, bi-weekly at 1:00 PM ET…
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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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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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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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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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opinions needed
So I'm highly hormone positive, but failed ibrance after 5 years. Got a new triple negative. Did carbo/taxol. Mastectomy, then new hormone positive mets after 8 months of xeloda. Doctor wants to do enhertu because she is worried about hormone treatment resistance and possible triple negative cells still floating around.…
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Getting scan results today, scared
Getting scan results of bone and CT after 3 months of tx. Nothing really to compare them to, since I had PET and MRI for dx. I'm scared, and need reassurance. Thanks.
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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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Embracing What Matters Most After a Metastatic Breast Cancer Diagnosis
Embracing What Matters Most After a Metastatic Breast Cancer Diagnosis Mar 1, 2024 Grief counselor Kelly Grosklags helps Melissa Jenkins moderate a special Virtual Community Meetup on embracing what matters after being diagnosed with metastatic breast cancer. Living with metastatic breast cancer can bring many changes,…
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tnbc mutated to hormone positive?
Has anyone had their tnbc mutate to be hormone positive? I was originally 99% er+ and 1% pr+. Then I was tn. Now I'm 95% er+ and 75% pr+! My understanding is that breast cancer usually becomes less hormone positive, not more…I'm not sure what to think…
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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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Battling triple-negative, non-hormone-sensitive metastatic breast cancer
Hello dear community, My name is Yvonne, I am 56 years old and from the Netherlands, and I am currently battling metastatic, triple-negative, non-hormone-sensitive metastatic breast cancer. After undergoing treatments with capecitabine and paclitaxel, my oncologists have identified Trodelvy (sacituzumab govitecan) as a…
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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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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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Kisqali/ribociclib, Faslodex/fluvestrant & Xgeva combo - Anyone?
I've been on this combo since Nov 2019. Since all treatment combos seem to offer their own side effects and challenges, I'd like to hear from others taking these drugs. Especially your experiences, duration of success and how you deal with the fatigue, itchiness, etc that goes along with this treatment.
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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 8:30 PM EST, and Wednesdays at 4:00 PM EST Young (45 and under)…
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Given my dx, should I adopt a dog?
Okay, bear with. Last year was the sh*ttiest year of my life, bar none. My DH was dx with prostate cancer (now in active tx), I had my own crappy dx (in active tx), and probably the worst hurt was that we had to say goodbye to our own fur girl, Preshy, who had been in our family for 13 years. She was my soul. Got me…
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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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Scanxiety and accuracy of scans
Hi all, I am right now having tremendous scanxiety about two scans I had on Tuesday. One was a nuclear bone scan, the other was a CT scan. They were supposed to reveal progress (or progression) after 3 months of Fulvestrant and 300 mg of daily Verzenio. I never had a bone scan before. The stupid technician came in after it…
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Kisqali (Ribociclib), Faslodex (Fulvestrant), Femara (Letrozole) - is anyone on this combo?
After many years on Faslodex and Femara, my onc has decided to add Kisqali to the mix as my tumour markers are rising to the 100s although my ct scans appear stable. I haven't noticed anyone posting about this particular combination. I'm very nervous about the side-effects and I'd love to hear how people are doing. Is it…
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What’s on your bucket list?
I am currently working on my bucket list and it got me wondering what everyone else wants to see and do. My list below in no particular order. Go parasailing (done May 2018) Go on a cruise (done Feb 2019) Go to the Bahamas (done Feb 2019) Go to Jamaica Go to Hungary and Ireland See the Northern Lights See Hepcat (Ska band)…
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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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Skull mets
I was told back in the beginning of 2021, after a brain MRI, that I had skull mets to the calvarium. I wasn’t offered any treatment for them. I’m assuming because I had no symptoms. Lately I’ve seen a number posting about skull mets and having SBRT. Am I assuming if I had no symptoms and I’m covered from skull to femurs in…
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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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"What a revoltin' development this is."
When I was very young, my grandparents and I would watch a TV comedy, "The Life of Riley." The protagonist would turn to the camera at some point and declare, "What a revoltin' development this is" when something untoward had occurred. It always brought a big laugh from the soundtrack. Several weeks ago, I had a bone scan…
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Faslodex Girls Thread
Tips for taking Faslodex without pain: ABSOLUTE MUSTS: * Warm up the syringes. At least room temperature. Armpits work well, as does belly skin. * Take the weight off the leg on the side of the shot. Relax that cheek/leg as much as possible. * Inject SLOWLY! It should take at least 30 seconds to empty each syringe. General…
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Mastectomy after dx with liver Mets stage IV
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Afinitor/Aromasin
I am waiting for my pills to arrive and fearful of starting a chemo after almost seven years of anti-hormones. I immediately started looking for info on this site, and the Afinitor topic was started in Jan. 8, 2012 with 35 pages of comments to go through. Do you think it is possible to start a new topic now that this med…
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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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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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mets to lung
hello. i got scan rusults yesterday. looks like abraxane is not working, since cancer is spreading. i am going on navelbine now. any words of encouragement? thanks. i am new to the boards, happy to find you all barb
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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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Lobular Stage IV Imaging Issues - I Know I’m Not Alone
Hi, everyone. I was thinking about starting a Facebook group for those of us who have so many issues with imaging. I got some feedback from others that they did not want me to start a separate group, so I am starting a group here. Below is my post on Facebook so that you can get a sense of the imaging issues I've had.…