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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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Seeking hope/thoughts
Hi all, My mother is now on her third cancer battle. In 1995 she had non Hodgkins lymphoma - she had chemo, radiation and a stem cell transplant In 2018 she was diagnosed with triple negative invasive ductal carcinoma - mastectomy and chemo In November 2023 she began having pain in her sternum. A CT scan & bone scan showed…
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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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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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Tips for fighting the dark clouds
I've started this thread at the urging of fellow Stage IV sisters. I've been fortunate enough to get a lot of really good advice from friends, healers, therapists, etc., on how to fight the dark clouds that come with Stage IV. Not everything will work for everyone and not everything will work all the time. But hopefully…
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Combat dry skin on face
This is not a huge problem, but I thought I’d throw it out to the community. As one of the side effects from the faslodex and/or Kisqali is dry skin, I’m curious to see if anyone has anything that has worked well for them? My face, in particular, is extremely dry and if you look up close (which I hope no one does), it…
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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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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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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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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…
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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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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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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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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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Numb toes
I'm starting a new thread because I don't see anything recent in the discussions. I've been having a weird feeling in the bottom of my feet. I don't even know how to describe it. Now, I'm noticing numbness in the toes in my right foot—mostly the little toe. It doesn't hurt, and I don't think it's neuropathy like I had when…
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Enhertu Dose Reduction Results
Hi! I've had 8 infusions of Enhertu at the full dose level and have experienced side effects of fatigue and general crappiness, not in keeping with my quality of life wishes. Because of this, I'm seriously considering going to a lower dose of 4.4 mg. I can't find any data on how effective the drug is at this lower level,…
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opinions needed
So I'm highly hormone positive, but failed ibrance after 5 years. Got a new triple negative. Did carbo/taxol. Mastectomy, then new hormone positive mets after 8 months of xeloda. Doctor wants to do enhertu because she is worried about hormone treatment resistance and possible triple negative cells still floating around.…
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Life does not end with a stage IV diagnosis (really!)
Our sister, kayrnic, started a thread celebrating being 2 years (hooray!) out from her stage IV dx. I was thinking along those same lines when I read her post. So often, those newly dx'ed stage IV, think they've been handed an immediate death sentence and panic or plunge into some very dark places. This is understandable,…
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Surgery for newly diagnosed stage 4 MBC?
Hey there. Newly diagnosed with stage 4 MBC ER+PR+HER-, multiple spots in lungs. When the lump was first discovered the expectation was that it was curable as there was no spread and the lymph nodes looked clean - that all changed with the PET scan. So…question: The only option offered now is hormone treatment, but the…
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Little rise in tumor markers, terrified
Hi everybody, I know markers for somebody work, for somebody not...i'm talking about CA 15.3 Mine were high before the cure, and low when cancer was stable (i started Capecitabine September '23). they were always about 20/23. Now they went up to 31.7 Normality is up to 31, but the 35% increase really scared me. I have a…
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Changing time/symptoms, mets in lungs and spine
I am very new to having stage 4 metastatic breast cancer to my lungs and spine. I was initially treated as stage 2 in 2019, had surgery and radiation and was placed on Tamoxifen. In June 2023, I developed this persistent cough that wa making it hard to breathe. I had a PET and biopsy in August that confirmed my cancer…
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Lynparza High Liver Enzymes & Blood Glucose
This will be week 5 on Lynparza. I’ve noticed since I’ve started my ALT, AST & blood glucose are in the high range. Curious if anyone else has had anything similar. Diabetes runs in my family, would like to get ahead of it. My last A1C was normal but at that time I wasn’t on Lynparza. I’m going to vent; if I bring it up…
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Getting scan results today, scared
Getting scan results of bone and CT after 3 months of tx. Nothing really to compare them to, since I had PET and MRI for dx. I'm scared, and need reassurance. Thanks.
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tnbc mutated to hormone positive?
Has anyone had their tnbc mutate to be hormone positive? I was originally 99% er+ and 1% pr+. Then I was tn. Now I'm 95% er+ and 75% pr+! My understanding is that breast cancer usually becomes less hormone positive, not more…I'm not sure what to think…
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Battling triple-negative, non-hormone-sensitive metastatic breast cancer
Hello dear community, My name is Yvonne, I am 56 years old and from the Netherlands, and I am currently battling metastatic, triple-negative, non-hormone-sensitive metastatic breast cancer. After undergoing treatments with capecitabine and paclitaxel, my oncologists have identified Trodelvy (sacituzumab govitecan) as a…
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Scanxiety and accuracy of scans
Hi all, I am right now having tremendous scanxiety about two scans I had on Tuesday. One was a nuclear bone scan, the other was a CT scan. They were supposed to reveal progress (or progression) after 3 months of Fulvestrant and 300 mg of daily Verzenio. I never had a bone scan before. The stupid technician came in after it…
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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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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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Skull mets
I was told back in the beginning of 2021, after a brain MRI, that I had skull mets to the calvarium. I wasn’t offered any treatment for them. I’m assuming because I had no symptoms. Lately I’ve seen a number posting about skull mets and having SBRT. Am I assuming if I had no symptoms and I’m covered from skull to femurs in…