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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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Peritonial carcinomatosis - help
Hello everyone! Today I learned from the CT examination that peritoneal carcinomatosis appeared. I am desperate because things were going well! I am waiting for encouragement and opinions from those with this type of breast cancer metastasis: peritoneal carcinomatosis. Has anyone tried HIPEC therapy or PIPEC therapy? I…
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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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Guardant 360 testing
I didn't see a top for the Guardant testing so I thought I'd start one. Does anyone know what it means when the first Guardant test showed a PIK3CA mutation, and then ten months later, it doesn't show that? I might need to change my treatment if I no longer have this mutation!
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I was just now dx with skin mets
Hi, I've not had good news since forever—since suspected recurrence in August 2023 anyway, looks like I won't be getting any either. I had some red raised places — not bumps, not nodules, that would get red, then go away, etc. that appeared Nov. 23, the same month I was dx with St. IV. PET scan didn't show this. CTs-four…
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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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How do you lift your spirits, even briefly...
…when you receive troubling news about your tx, health, etc.? How do you comfort yourself and make yourself feel safe in spite of troubling labs, scans, etc.? I ask because it seems lately my check ups have been disappointing and although I try not to have any expectations about any of the tx I'm getting, I have to have…
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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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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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leptomeningeal metastasis
so I have been diagnosed with them (lesions in posterior cerebral fossa on cranial nerves and in spine). chemo changed for Enhertu trying to stave off a disease while the preparations for intratecal chemo via Omaya reservoir going. Looking back in the hindsight there were symptoms of it in August, just not visible on…
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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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Mammogram if metastatic
Do you gals with metastatic disease still have annual mammograms? I can't understand why they would be necessary with ct scans every 3 to 6 months. Is the Dr just drumming up business for the hospital? What does your MO say? I haven't had one since 2017 when I thought I was all clear and 2 months later found cancer in my…
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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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Young with MBC
This is a thread for those 45 and under who have been diagnosed with metastatic breast cancer, and facing the unique challenges associated with receiving this diagnosis at a young age. Please feel free to discuss here, share your story, and support each other! --Your Mods
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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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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…