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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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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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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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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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"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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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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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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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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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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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.…
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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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Curious about time to recurrence for Lobular (ILC)
Hi there fellow lobular thrivers, I was basically a De Novo Stage IV as I had progression shortly after I was diagnosed when I had just started neoadjuvant chemo. But I’m curious how long it was for others between their first diagnosis and recurrence to a distant (non-breast) metastasis. My theory is that the statistics…
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Experimental Inavolisib Seems Promising for Certain Metastatic Breast Cancers
Experimental Inavolisib Seems Promising for Certain Metastatic Breast Cancers Dec 7, 2023 If approved, the medicine may be an alternative to Piqray for treating certain cancers with a PIK3CA mutation. Read more…
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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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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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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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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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Piqray users, what is your experience?
I just started on Piqray and Faslodex after Ibrance and Arimidex stopped being effective. I am weakly ER positive and PR negative, so I can't say it was a complete surprise that at some point that would occcur. I would be interested in hearing from others how you are doing on this very new medication. So far, the only side…
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Argh, close to panic again
Getting some super strong scanxiety. Insurance denied PET (I guess because the first one didn't reveal any bone involvement, according to the denial) so they won't allow a PET. My MO wants a CT and a bone scan. The bone scan looks for c in bones, and the CT-well, you know what it does. I went from 1 scan scheduled for…
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Starting new medication (Xeloda ) today I live alone and worry what to expect.
Hi everyone I am starting on Xeloda today 7 days test run. I live alone and pretty nervous on what to expect. Can you share plese what I really need to pay attention to and what would be the signs if any to rush seek medical attention. Thank you .
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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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MBC and lowered immunity
My white blood cell count is down, neutrophils are down… not that I am sure what that even means, but I do know that my immune system isn't doing so great. Three head colds since December, and they linger and get harder to shake. I now mask up everywhere I go where I'm going to be in crowds. I take public transit to get…
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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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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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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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How long with Ibrance?
Hello, I was diagnosed with MBC ER+/HER2- (several metas on bones, nodes, lung and liver!) in December 2019 (at 40 years old) and received Ibrance + Anastrazole + Zoladex+ Xgeva + Orocal as treatment since the diagnosis. It seems to work very well because only the meta on left bone shoulder is still active (at Pet Scan). I…
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MBC and working
Hello sisters I’m new here and just diagnosed stageIV. Has anyone with this stage and still working?? I am a RN and single mother and I have to take care of my 11 years old daughter😭😭
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Need MO (Medical Oncologist) recommendation (in SF Bay area)
Hi all, I was diagnosed with stage IV in Sept. 2023 in Taiwan by a Taiwanese MO from whom I am receiving my hormone and targeted therapies. I continue to work until the third round of treatment on 12/22/2023 when I took a leave of absence from work. Because of the stress from work become too much. So, I asked my MO to…