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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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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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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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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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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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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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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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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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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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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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Multiple Organ Mets and on Kisqali/Ribociclib (3+yrs)
I always hear amazing stories from those with dx’d with bone mets de novo on this drug. Curious to hear from those with multiple organ mets or were dx’d secondary who have done well long term on the Kisqali/Ribociclib combo. Where were your mets, and how long have you been on this treatment?
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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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Progression after ribociclib (csk4/6i) and letrozole
Hi I had her2 neg er+ breast cancer in 2018. In 2022 i had recurrence in my bones (all over with 3 collapsed vertebrae) and liver. I was on ribociclib and letrozole that worked really well, pet was negative and most metastasis disappear. In August I had liver recurrence. Blood test and markers are ok and i feel well so i…
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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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Monday MBC Zoom thread place to keep chatting
This is a space held for our Monday MBC Zoom Meetup members to catch up in between meetups. To join the weekly virtual support group, Mondays at 2pm ET, please register here.
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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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Mammograms and Colonoscopies
I'm only six months in on my stage IV diagnosis but I keep forgetting to ask my doctor about my upcoming 60th birthday and the dreaded colonoscopy. He already told me that I don't need to get mammograms but does that hold true for colonoscopies? (Fingers crossed).
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Anyone 5+ years with liver mets and ER+ Her2-?
I just have to ask. If you had liver mets at diagnosis of mbc, and you are ER positive and Her2 negative, and have reached five years already, please raise your hand. Most of the 5+ years women I see here on BCO are either Her2+ (the Her2 drugs are quite successful), or they started with, and may still have, only bone…
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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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Anyone else with just liver mets
is there anyone else on the board with stage IV only in liver? It seems everyone else has liver and….bone,brain,etc. I’m not complaining but at age 77 keep wondering what’s next or if we are missing something. I feel so sad for the young women and feel I’ve had a full life and I know where I’m going when I die. Not in a…
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Anxious about mixed scan results
Hi all, ER+ HER2- with mets to lung, liver and bones for 6 years. Been on xeloda for about 4-5 months now and had my first scan, which showed significant improvement in all areas except for two stupid little bone mets. It worked in my lungs, liver, every other bone, aside from these 2 (one spot on hip and one in femur)…
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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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Faslodex Girls Thread 2014
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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Bone Pain
I just posted in the wrong group by accident, now I have to explain this all over again, in this group, the right group. My hip/thigh bone and down my leg to my knee is aching. The groin area gets painful and I cannot get up off a chair or go up stairs very well. This started about 2 weeks ago. I just had a Lattimus Dorsal…
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Anyone starting brand new 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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How long on a CDK 4/6 inhibitor (Ibrance/verzenio/Kisqali)?
I’m sure this info is buried deep in the various stage iv threads, but I’m hoping people will post their experiences and success stories here. I think the median from the initial studies was about 2 years, but obviously there is more real world experience as time passes. Thank you!
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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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Single or part of a couple? How different is the Stage IV journey?
Pure curiosity. I’m single. It seems as though the majority on here are coupled up but perhaps I’ve misread. Not a pity party, I promise. I just wonder if anyone else is going through this with friends and (adult or younger) children rather than a partner, and how they feel about it?
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If you are not Stage IV but have questions, you may post here
This thread is for those people who are not stage IV but are having concerns or questions regarding stage IV.
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And now for something unusual and a bit scary
Other than living with stage IV for 12 years, my bc life is something I keep low key, even on bco. However after 12 years on an AI (I’ve tried them all) the cumulative side effects have worn me down.None of my se’s were truly debilitating and I managed to cope but I have been struggling with chronic low level pain that…
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Wishes Fulfilled, and a Legacy
A few months ago I posted about entering hospice and received many precious notes from well-wishers across the world. Your kind words mean so much to me that I’ve placed them in a document to look at whenever I need a lift! Words indeed support the healing process, and I am very grateful for being a recipient of so many…
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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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Kisqali side effects
Hello.. I am on week 3 of the first cycle of Kisqali. I have had the dosage lowered to 400 due to gastrointestinal side effects. The stomach cramps are terrible. I have tried dycyclamine, mylanta, gas x, pepto, and other over the counter and nothing helps. I also use a low setting heating pad which does help. I do have…
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Ibrance
I have been taken Ibrance with AI for over 2 years. I have bone only Mets when I first diagnosed as MBC. Ibrance worked very well in the first year and second and brought my CEA to 1-2 range. Since early this year, my CEA went up to 3, 4, and 5. My CEA lab yesterday is 7 and CA15-3 is 37. My CT/bone scan shows no changes…
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Transitioning
This is not an easy note to write, and I am very sorry that it may be a difficult one to read. I've come to the realization that I can no longer contend with the effects of metastatic breast cancer combined with multiple GI issues that prevent me from eating and drinking. I am hoping that hospice will help ease my…