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No treatment and no progression
wanted to let everybody know- I stopped conventional treatment( was on enhertu at the time) in February. Still had lymph nodes that were lighting up on PET , original lesions in lungs seemed to be inactive and fibrotic. Scan at the end of May shown no change. Obviously everybody's situation is different- mine was an…
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Paid survey by phone/computer
Hi! For those who don't know me, my name is Kris or KBL on the forum. I've posted before about surveys I've done with RC Horowitz. They are a research company who performs surveys. Aside from the other post I placed, they're also looking for up to 30 participants to have a phone/computer survey. This one will pay $175. It…
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Ixempra
After failing Kisqali/aromasin, abraxane and halaven, I’ve now begun my journey with Ixempra. I get treatments once every 3 weeks. Tuesday was my first tx - in between meltdowns (due to report of progression), I slept a lot. Until that night. I was up all night long. I’m sure it was the steroids in the premeds. Wednesday…
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Breast cancer mets to lungs but now called mucinous carcinoma
I am a 62 year old female. DOB 4-13-1960. I was treated in 2012-2013 for Stage IIB Breast Cancer EST and PRO positive cancer. Double Mastectomy DIEP at Westchester Medical Center in NY. Had 6 rounds of chemo, then after two surgeries, had radiation on R breast with an HMRT machine to limit exposure of my lung. Oct 11,…
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New metastatic diagnosis
I just received my path report after 4 months of testing for a suspicious lymph node in portahepatic area near liver Results: porta hepatic lymph node positive for metastatic carcinoma with apocrine features. Tumor cells positive for GATA3 and CK7, negative for PAX8, GCDFP and mammoglobin. Although breast origin is favored…
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Stage 4 - MBC long term survivor (3+ years)
Hi, I was recently diagnosed with stage 4 MBC. A friend of my friend has been living with MBC since 2012 (she’s been on clinical trial since 2012). This kind of story gives us hope, I would love to hear from anybody that’s been living with MBC for 3+ years. Please share your story with us
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Paid survey in New York City - please see post for info
Hi! For those who don't know me, my name is Kris or KBL on the forum. I've posted before about surveys I've done with RC Horowitz. They are a research company who performs surveys. Right now they are looking for Hispanic and African American breast cancer patients who either live in New York or New Jersey and who could…
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Lines of Endocrine Therapy
I am very interested in the details of endocrine treatment experienced by other members with an ER+/HER2- diagnosis like mine but have been frustrated by trying to make sense of the info that appears beneath an individual's post. I am particularly interested in the chronological order of each type of treatment and whether…
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New zoom meetup Tuesdays, 5:30 PM PT (8:30 PM ET)
NEW recurring zoom meetup for people with metastatic breast cancer Tuesdays, 5:30 PM PT (8:30 PM ET) Register Here and looking forward to seeing you.
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TAXOL- Ive been on for 10 months, has anyone been on longer?
Hi, My doc thinks since I am stable, and I should leave Taxol (2 weeks on one week off) and go on something else when I stop being stable (probably Enhertu) since Neuropathy will only get worse on Taxol. I'm afraid to go off of Taxol since it has put me into "stable". Markers are going up slightly, every 3 weeks. How long…
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Bouncing from hope to despair. Ugh
Is it normal to have really hopeful days and the very next to just feel despair? I would love to hear those amazing stories that are out there with long life and stage 4. I am Her2 positive Mets to liver and.chest nodes. My anxiety could be up because this month is my first pet scan since completing thp in July. So, once…
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Pleurx pain
hi I just had a Pleurx installed yesterday and I have pain outside the tube pain. Next to the tube, my rib and insides are hurting. It’s like I have something in there. It really hurts. Is thisnnormal
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Tumor markers - how long to see a change?
Hi all, there have been a lot of posts about tumor markers but I didn't see anything specific to my question. I've been on IV chemo for six weeks (four weeks of chemo, two off) and just had tumor markers drawn because I'm having pain in my rib cage where I have a met or two. Unfortunately I never got baseline tumor…
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Prolonged healing from a wrist fracture.
I fell off my bike five weeks ago; what was diagnosed as a simple wrist fracture has turned into constant pain and swelling. Anyone here has any experience with the side effects of Ibrance or Letrozole and healing complications from a fracture?
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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…
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De novo questions
De novo Her2 + ladies, 1. How long were you on Herceptin and perjeta before ( if) you had progression? 2. If no progression, how long have you been Ned or stable? 3. Who all has gone off treatment? I know there’s a HUGE Denovo thread, but I get lost in there. Thank you sisters. I am grateful for the support.
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Leaky eyes anyone ?
still have eyes leaky . Feel sick all the time because of this . Help
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Intramedullary metastatic disease?
Hi, I need some support. I was just diagnosed in October and I thought I had all the mets - brain/bones/liver/lungs. Then I was diagnosed with leptomeningeal disease one month ago. (Did whole brain radiation and am now on Xeloda/Tuksya for that.) And now, I just got MRI results that say this: "New 3 mm nodule of…
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Working full time to keep health insurance
I am having trouble continuing to work full time and wonder if anyone else is dealing with the same issue. How do you deal with needing to continue to work, being basically stuck in a job because you have to keep the health insurance? Have you found a way to quit working without being financially destroyed? Disability…
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Aquaintance celebrates 25 years since advanced cancer diagnosis!
Hi everyone. I just have to shout it out because it gives me such hope. She is such a gracious, generous and caring person.
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Podcast: Verzenio Improves Overall Survival in HR+ HER2- Adv BC
Verzenio Improves Overall Survival in Hormone Receptor-Positive, HER2-Negative, Advanced Stage Breast Cancer Sep 28, 2022 Dr. Matthew Goetz explains the latest results from the MONARCH 3 study on Verzenio. At the European Society for Medical Oncology Congress 2022, Dr. Matthew Goetz presented interim overall survival…
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Podcast: Trodelvy Offers Benefits for HR+ Breast Cancer
Trodelvy Offers Benefits for Hormone Receptor-Positive Breast Cancer Sep 22, 2022 Dr. Hope Rugo discusses the latest results from the TROPiCS-02 trial showing Trodelvy improves overall survival compared to chemotherapy in metastatic, hormone receptor-positive, HER2-negative breast cancer. At the European Society for…
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leptomeningeal carcinomatosis
Hello, I found out last night at 10pm that I have leptomeningeal carcinomatosis. I have been in the hospital since Friday (it's Tuesday). I may go home today or tomorrow or who knows. I have to start WBR today. And I will be switching chemos from Gemzar to Abraxane and Carboplatin. My MO said that if the WBR doesn't work,…
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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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New liver progression - looking for advice/suggestions
Hi all -- I am looking for some current advice / suggestions regarding options because I have some new progression. (Note: tried searching the different threads but new format continues to make that difficult, and lots of posts are pretty old.) I'm HR+ / HER2- (+1) based on initial MBC liver biopsy 3 years ago. I've been…
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Do metastatic patients never fully get rid of the cancer?
Hi all, I am a metastatic breast cancer patient, after 12 years remission from ER+, PR+, HER2+ my cancer came back as ER-, PR-, HER2+. It is a mass in my chest, in the lymph nodes of my right armpit and a tumour on my pancreas. However both my breasts are clear. I've been receiving Paclitaxel, Pertuzumab and Trastuzumab on…
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Zoladex injection- increased bruising anyone?
I’ve been on zoladex shots for a number of years. Last month, I had a rather large and painful bruise afterwards. I chalked it up to the new MA but still reported it to my MO. Today when I went back, he tried twice to get me to come back with him and I wouldn’t. I held out for the other MA who has given me countless…
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Mets to bone only
Hi, I am stage 4 and have mets to bone only. I aspirated on an almond and was hospitalized for 5 days. I went in to have my regular labs and to have my med list reconciled since the hospital had made some changes. I asked for a raised toilet seat and a walker. The palliative care nurse then says "are you thinking about…
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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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Questions regarding status change and mutations
I’m so new to this and my mind is still in overdrive. Everyday I come up with a new concern and worry. Recently, it is how common is it for Her2 positive to switch to her2 negative? Also, how do we know when we should get tested for things like oik3 mutations? I don’t even know what these things mean 🤦♀️ Did I mention I’m…