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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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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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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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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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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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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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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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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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Primary endocrine resistance
hello. I was dx with stage IV de novo in July 2023. ER/PR+, Her2 - small Mets to pelvis Treatment was Letrozole with Ribociclib. First scan after 4 months showed reduction. Second scan 3 months later showed bone mets reduced but small spots on liver. Told I was primary endocrine resistant. Moved on to capacetabine. On…
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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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How often you do PET scan
I am writing this post on behalf my mother, who has breast cancer and is undergoing hormonal treatment. Her doctor performs a PET scan every year. There were nodules on her lung and a lymph node, but with treatment, there has been significant improvement, and the tumor has reduced in size considerably. Today, she had her…
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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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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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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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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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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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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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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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Tumor Marker Increases Within Normal Range
Has anyone had experience with tumor markers increasing within the normal range? Since completing chemo/rads/mx after stage IV diagnosis (one unconfirmed met to the sacrum) I had been staying in the 13-14 range on the CA 15-3. I just had it increase to 19.6. I know that's a "normal" range, but it is still concerning to me.…
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Ibrance Users greater than 24 months
How many of us have used Ibrance (plus an antiestrogen) greater than 24 months - even those who have moved on to next line of treatment. Apparently, the median PFS on this combo is now 27.6 months. For bone mets only the median PFS at 36.2 months. Data is from the Paloma 2 trial.
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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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Gemcitabine / Carboplatin
Anyone have any experience or tips on this combo. I’m starting this combo on the 19th Nov since Ibrance/Falsodex and Xeloda failed after 11 months in. Thank you in advance for any tips or suggestions. I got my port placed Wednesday. Thanks so much, Karen
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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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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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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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patty
Does anyone have info on Patty? Haven't seen her here for awhile.
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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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Lobular Sucks!
Invasive Lobular Cancer (ILC) manifests very differently from the more common Invasive Ductal Cancer (IDC). It is considered an "old lady disease" and I should not be having to deal with it at my age, but here I am. It was difficult to scour the boards for patients like myself in order to learn from the experiences and…
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AI or targeted therapy failure?
Hi there, Just wondering how one knows which medication failed if you are taking a targeted therapy and an AI? My sister is on Ibrance and Letrazole and MRI was clear on spine in November and now a 19 mm spot on T2. Her tumour markers have also been slowly rising. Her cancer is lobular, estrogen positive, progesterone…
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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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Stage IV MBC Fitness
Hello! Welcome! We are done with Stage IV, moving on and planning to staying healthy for a long time. We're Stage V (Which is not dead. We're doing fine, ready to live with this beast.) This is the American Cancer Society/NCI consensus on exercise for cancer patients. * 150 minutes/week moderate-intense aerobic exercise or…