Stage IV/Metastatic Breast Cancer ONLY
Discussion List
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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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Joining the “Club”
Hello all, looks as though I’ll be joining the group as all indications are a recurrence of my BC after over 10 years of NED. I’ve been having “traveling” bone pain for several months now, and even though all the Dr’s knew of my BC history, no one until I visited my Oncologist recommended a CT. My Oncologist phoned a few…
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Side Effects From Long Term Treatment of Herceptin & Perjeta
Hi there, just wondering has anyone else developed Tinnitus and/or a collapsed vocal chord? I have been on treatment for 8 full years going into my ninth year.
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Mom joined the Stage IV now 💔
hi beautiful ladies My mom got recurrence last June, PET scan showed tiny nodule over the lunge due to age and other health issues the doctors did not do lung biopsy and decided to put her on letrozole and do another PET scan after 6 months to see the response so no staging since June Last week she did another PET scan and…
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Need some advise
My wife was diagnosed with stage 4 terminal breast cancer. 2 years ago. Versinio helped the spreading. Has stopped working and starting pigway. Can anyone give me an idea when symptoms will start if she is going to get them. I know this is a random question and been dealing with this a while. Small family not around and…
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Halaven - Day 1
So, I'm the first person on this newly approved chemo at my med center. Lots of people who told me side effects.... They had a fancy dinner put on by the drug company last night so they all would know about it... :) Funny, no one gave ME steak and shrimp. Anyway, got hooked up to some saline as usual (altho, my onc's nurse…
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Paying for drugs while on medicare
I am retired, age 75, single and on Medicare part D for drug coverage. The copays for Ckd4/6 like Verzinio and Ibrance are between $5,000- $7500 monthly which no one can afford. How do people on Medicare part D for drugs get help with paying for these drugs? I am reading conflicting info as relates to people on Medicare.…
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United Healthcare Employee Health Insurance
The company I work for is in the process of most likely being purchased by another company that has United Healthcare for their health insurance coverage. With my current employer I am on Blue Cross Blue Shield Gold and have been happy with that coverage so far. I was wondering if anyone had any knowledge of any problems…
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Can breast cancer stage 4 de novo defeated ?
Hello! I am from Romania and I received the diagnosis of breast cancer in September 2021 (in both breasts / stage 4 de novo with metastases in the axillary nodes / invasive ductal carcinoma / luminal B/ ER+ PR+ / HER2- / the genetic test is OK and I did not present genes mutant / I did chemotherapy, then radical masectomy…
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Any long-haulers living with bone mets?
Long story short: managed to get rid of my brain met. No mets in the rest of my organs. Scans showed bone mets shrinking. I read people with stage 4 BC with mets lived longer than those with mets on the organs, but could not find a difference in the asinine 5-year survival rate. Can anyone with bone mets here can confirm…
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Tukysa + Standard Care Improves Survival for HER2+ Brain Mets
Tukysa Plus Standard Care Improves Survival in People With HER2-Positive Brain Mets Feb 27, 2023 Tukysa plus the standard of care improved survival in people diagnosed with metastatic, HER2-positive breast cancer that had spread to the brain. Read more...
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Off Topic - A Family Matter
My stepson is in his 40s, married with a couple kids; one’s a teenager, one’s a tween. They live about three hours away from us. SS has been a part of my life since the late 1980s when he was a tween and I married his dad. He’s undergoing tests for some form of blood cancer. It doesn’t sound good. When Dh and I visited…
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Have not found the right doctor
I am on my 5th oncologist. He is an asshole (medical gaslighting). Good thing he left to practice at another facility. I am hoping the one to replace him won't gaslight me or would at least give a fuck about my wishes. To those who found the right one, how many oncologists did it took to find the right doctor?
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Positive specially for newly diagnosed
I am 3 years 8 months from my CT which diagnosed me with widespread pulmonary and chest metastasis. I had chemo , targeted therapy, chemo again then for 1 year I have been on no systemic treatment but had 2 brain surgeries , 1 SRS and this month diagnosis of some new brain lesions. I have been working all the time ( part…
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About metastases
Hello ! I am from Romania and I received the diagnosis of breast cancer in September 2021 (in both breasts / stage 4 with metastases in the axillary nodes / invasive ductal carcinoma / luminal B/ ER+ PR+ / HER2- / the genetic test is OK and did not show any mutated genes / I did chemotherapy, then radical masectomy of both…
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Numb Chin Syndrome - feeling terrified
Hi everyone, I hope this is OK, I am posting this on behalf of a dear friend with MBC, Maria. Shes sitting next to me as I type this but is feeling too overwhelmed to do this herself and asked me to post. Maria is 53 years old and was diagnosed stage IV in 2015. She currently has mets to her liver and bones (mainly bones…
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Another paid survey
Hi, everyone! This time they are looking for people who are ER+, Her2- who have been on hormone therapy but are no longer and are on second line or more. The list you've been on and are no longer includes Ibrance, Verzenio, Kisqali, and the following list. Please private message me if you're interested. If you have already…
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My New Treatments: Piqray and Orserdu
Today is Day Six on the former, Day Two on the latter. Wish me luck! Tina
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Piqray
hi, I would like to hear from people who are stage 4 and are taking piqray. I'm supposed to start this medication on Monday. It seems to have a lot of side effects. I guess all the treatments do. However, I would like to hear from people taking this. Thank you Melissa
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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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Diet changes?
has anyone had success with reducing their bone mets or remission by changing their diet? I don't do refined sugar but it diesntseem to be enough.
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Progression and New Treatments
All, My most recent scans in early January indicated that my lung mets had enlarged considerably. I have stopped Faslodex after my nearly 12-year run and will beginPiqray together with another treatment which is still being worked out. I start the Piqray tomorrow. Any tips? There's not a lot of info on the thread here, but…
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Just started Verzinio bone mets
I just started verzinio yesterday at 50mg. I have lots of allergies to meds so we started at the lowest dose as a precaution. I am also taking letrozole, and zoladex with zometa infusions monthly. Any advice,cautions,things I should expect,things to avoid or do? I'm Nervous about the side effects.
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Join us: Younger with MBC Zoom Meetup
Hi all! Join us for a Zoom meetup for those who are Younger with MBC discussing the unique experiences that a stage IV diagnosis brings at a younger age. We'd love if you could join us on Thursdays bi-weekly at 1pm ET. Register in advance for this meeting: After registering, you will receive a confirmation email containing…
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Extensuve bone mets at 36 with a 2 year old toddler...
I am 36 years old with a 2 and a half year old, i was diagnosed with cancer at 34 and was 12 weeks pregnant with our 2nd child. The 1st biopsy the doctors did aborted my baby (7the miscarriage). I had been living with a lump in my breast for 4 years and during pregnancy that the doctors told me was a cyst. My mother passed…
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Another day, another lump
I am so fucking sick of this shit. Is this part of the disease to find another lump on a different breast. I have been taking Ibrance, Anastrozole and Zometa for this disease. I've changed my diet since I have been diagnosed 3 years ago along with supplementation prescribed by doctors. I exercise and managed to build more…
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Young Adults with MBC Zoom Thread: Place to keep chatting
This is a space held for our Young With MBC Zoom Meetup members to catch up in between meetups. To join the weekly virtual support group, Thursdays at 1pm EST, please register here. This thread has been discontinued and moved to:
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FDA Approves Orserdu for ER+ MBC (oral SERD)
FDA Approves Orserdu for Metastatic, Estrogen Receptor-Positive Breast Cancer Jan 27, 2023 The FDA has approved Orserdu, a new oral medicine to treat metastatic, estrogen receptor-positive, HER2-negative breast cancer with an ESR1 mutation. Read more....
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Stage 4 with bone mets to mandible & T4 spine
Hello, I was diagnosed in December 2022 with what they thought was stage 2. After Pet scan it’s now stage 4. Mets to T4 spine and mandible. I’ve had one round of TCHP chemo and feeling pretty good. My oncologist hasn’t said what his plan for the bone Mets are other than adding Zometa. I’m wondering if the chemo will help…
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Newly Diagnosed
I’ve recently been diagnosed with Stage IV and am a nervous wreck. I’m still in the process of getting scans and a biopsy to determine the extent of it. I can’t seem to cope with the anxiety. How have people here dealt with the anxiety? I’m not sure how to reach some level of acceptance so as to carry on and do what I need…