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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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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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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 2-3:30 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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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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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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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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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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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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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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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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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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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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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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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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Enhertu
good morning wondering how many people lost there hair on enhertu ?
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Just diagnosed with ILC mets
Hi, all I had ILC back in 2008. Had radical mastectomy on the right breast and prophylactic on the left. Chemo AC→T, radiation and 7 years of Arimidex. 16 years later I am back in the game. Still in discovery phase. Had FDG Pet Scan that shows liver uptake, had endoscopy that shows little spot in the stomach consistent…
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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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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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Elacestrant (ORSERDU)
Starting this topic to share info about the new medication elacestrant. Elacestrant (ORSERDU) was recently FDA approved for ER+/HER2- MBC for patients with the ESR1 mutation. Just before it was FDA approved, I was able to obtain the drug through an expanded access program (thanks to WeninWI for the info!). The expanded…
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Information on GATA 3+ Cancer
Hello Friends, Thank you for accepting me in the group. I am ER+, HER2+ and GATA3 +. I was recently diagnosed (December 12, 2022) with Stage 4 Breast cancer with metastasis to Bones, lymph nodes and spleen. My chemotherapy regimen includes Trastuzumab(once every 3 weeks), Paclitaxel (every week) and Zoledronic acid (every…
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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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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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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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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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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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peritoneal carcinomatosis
I am looking for others who have peritoneal carcinomatosis who would like to share their stories and treatments.
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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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ELEIN 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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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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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…