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Anyone on Piqray?
I’ve been on Ribociclib/Faslodex tx for liver mets since July 2023. Recent MRI indicated several new liver lesions. I’m rather disappointed that the above tx only last 15 months. Going to start Piqray this week. I’m concerned about the side effects of hyperglycemia and diarrhea. could you please share your experience on…
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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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Afinitor/Aromasin
I am waiting for my pills to arrive and fearful of starting a chemo after almost seven years of anti-hormones. I immediately started looking for info on this site, and the Afinitor topic was started in Jan. 8, 2012 with 35 pages of comments to go through. Do you think it is possible to start a new topic now that this med…
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Lynparza/Olaparib Anyone?
I'm looking to share side effects or just any updates on Lynparza / Olaparib. I just started targeted therapy on Jan 12th. Aside from a little heartburn at first (helped with OTC pill), I've now started some daily Immodium, which the pharmacy sent WITH the Lynparza. Lol. I've started to just feel plain odd and very…
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MSK will no longer be covered by Anthem Insurance
We just received a letter that my cancer center, Memorial Sloan Kettering, will most likely no longer be covered by our insurance Anthem (Blue Cross Blue Shield) starting January 2025. Is anyone else in the same boat? Has anyone gone through the same experience with their insurance cutting off coverage for their medical…
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Difficulty breathing
I was recently diagnosed with metastatic breast cancer in my bones- de novo at 41 years old. I have been having difficulty breathing on and off for the past few months. It feels like air hunger - every day, like I just can’t get enough air. They’ve checked me for a blood clot twice now, so that’s not it. It does get worse…
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Tips and tricks on addressing Side Effects
Hi, All As I am going through my treatment of mBC ILC I, like many others, have Side Effects that I’m trying to overcome to be on the treatment and lead my life as normal as possible. So I decided to post some tips that worked for me. When my recurrence was discovered during endoscopy I had small lesion in my stomach…
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Guardant 360 testing
I didn't see a top for the Guardant testing so I thought I'd start one. Does anyone know what it means when the first Guardant test showed a PIK3CA mutation, and then ten months later, it doesn't show that? I might need to change my treatment if I no longer have this mutation!
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Feelings and insights about Breast Cancer Awareness Month as people with MBC
October is Breast Cancer Awareness month, which can be an overwhelming time for many women and men affected by breast cancer, especially for those with a metastatic breast cancer diagnosis. We'd really like to have everyone discuss here what you think and feel approaching this month. Thank you ❤️
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18 plus years now
I like to post here occasionally, this forum helped me a lot early in my dx. I am living well with stage v for over 18 years. I am triple positive and on herceptin and Aromasin. For the last nine years I have had no signs of cancer. The last time the cancer was active it was in my bones and lungs. I know stories like this…
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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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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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My boobs keep trying to kill me
Hello Sisters! It’s been awhile since I’ve last checked in, but am in need of advice/recommendations/encouragement. Background – Diagnosed with de novo ILC (ER/PR+, HER2 - ) with innumerable sclerotic bone mets in 2018 at age 50. This was found on a routine mammogram – I was totally asymptomatic. Had a R mastectomy and…
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I was just now dx with skin mets
Hi, I've not had good news since forever—since suspected recurrence in August 2023 anyway, looks like I won't be getting any either. I had some red raised places — not bumps, not nodules, that would get red, then go away, etc. that appeared Nov. 23, the same month I was dx with St. IV. PET scan didn't show this. CTs-four…
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Liver met
Frustrated and angry. I've had MBC for 4 years now. I did really well on Verzenio/abemaciclib and was told I had NED in July. I just got my CT scan back and it shows a probable tumor on the liver. PET scan and liver biopsy coming up. My tumor markers have been rising too. Lucky to have had 4 good years so far, but just 3…
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Kisqali Exemestane
Hello, Anyone on a Kisqali and exemestane combo? I'm just finishing my first cycle--after 8 rounds of paclitaxel was getting to be too much for me, my onco and I decided to try this oral chemo. Noticing my hair thinning, which is extra upsetting as I cold-capped with the paclitaxel expressly because I did not want to lose…
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Elacestrant/Orserdu
1QT.2024 My TM CA-15-3 went up. I am very nervous. I just started Elacestrant its my 2nd week and i am getting mixed messages here about that it causes spikes in tumormarkers activity for some patients and not so much for others. I was taken off my previous meds Kisqali+Letrozole on Jan 5th after PET scan that showed new…
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Bone Mets diagnosis 18 mos, lesions on liver on CT last week
Hello, my wife was diagnosed with stage IV breast cancer with bone met about 18 mos ago. She is currently on kisqali (400 mg), and Letrozole with monthly Zolodex shots and Zometa every 4 months. On her most recent CT (last week) the report said she has 3 lesions on the liver, 14 mm, 14 mm, and 15 mm. Still awaiting report…
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HER2-Positive Brain Mets Respond to Enhertu
HER2-Positive Brain Mets Respond to Enhertu September 12, 2014 The targeted therapy Enhertu (chemical name: fam-trastuzumab-deruxtecan-nxki) helped control areas of metastatic HER2-positive breast cancer in the brain, according to results from the DESTINY-Breast12 study presented on Sept. 13 at ESMO 2024. Read more…
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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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patty
Does anyone have info on Patty? Haven't seen her here for awhile.
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Pik3ca E110del mutation? it's rare
anyone have a PIK3CA E110del mutation? I do. it's rare, like 1 in 4000 Pik3ca mutation is E110del. it kept me out of a clinical trial because I didn't have one of the top 10 mutations. arghghgh. we're going to try Piqray anyways. arghagrhgargharghghhgh. Same thing happened with my ESR1 mutation as well. I guess I'm…
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Peritonial carcinomatosis - help
Hello everyone! Today I learned from the CT examination that peritoneal carcinomatosis appeared. I am desperate because things were going well! I am waiting for encouragement and opinions from those with this type of breast cancer metastasis: peritoneal carcinomatosis. Has anyone tried HIPEC therapy or PIPEC therapy? I…
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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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How do you lift your spirits, even briefly...
…when you receive troubling news about your tx, health, etc.? How do you comfort yourself and make yourself feel safe in spite of troubling labs, scans, etc.? I ask because it seems lately my check ups have been disappointing and although I try not to have any expectations about any of the tx I'm getting, I have to have…
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Moving on from Ibrance to Orserdu
After 7.5 years on Ibrance & Letrozole I had slight progression. A blood biopsy was ordered and I remained on I/L. I had developed great pain in my shoulder and this was found to be cancer. Blood biopsy reported ERS1 & PIK3CA mutations. I completed 5 rounds of radiotherapy to the shoulder and 2 days later on 29th of March…
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Mammogram if metastatic
Do you gals with metastatic disease still have annual mammograms? I can't understand why they would be necessary with ct scans every 3 to 6 months. Is the Dr just drumming up business for the hospital? What does your MO say? I haven't had one since 2017 when I thought I was all clear and 2 months later found cancer in my…
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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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High creatinine, high ketones?
I am not sure how common these side effects are, but I've been experiencing them so I thought I'd check in and see if there's anyone who has already experienced these and can maybe shed some light on what I might expect. My meds include kisqali and letrozole. Not sure what might be causing the issues. TMI time: I noticed…
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MSM (Methylsulfonylmethane) -Sulfur supplement
Is anyone else taking MSM? I started this week because I read that it can help with joint pain, inflammation, hair loss, nail damage and diverticulosis a new issue that has come up for me. I'm taking it in powder form, dissolved in a large glass of water. So far it is vile! I can taste it in my mouth all day. I'm just…