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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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Is anyone from NYC here
Was wondering if anyone knows any really amazing oncologists here, I'm not thrilled with the doc I have, was hoping for a specialist that does only patients in Manhattan with stage iv. Any advice you can give would be of great help, as there are so many doctors when I start searching on google I have no idea who tto call…
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Stage 4- Docetaxol (Taxotere) Treatment
Last week, I started a new-to-me IV Chemo after progression while on Doxil. I have searched the Stage 4 posts but not finding much so wanted to have a thread to post my “story” to allow a place to ask questions as well as posting experiences, hoping to help others if they move to Docetaxel, too.
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BRCA2 positive
Hi everyone, I'm currently in remission, stage IV bone mets, BRCA2 positive patient. I should be doing bilateral salpingo-oophorectomy in the next few months and I want to check if there's anyone here who did it? If yes, how did it go? How did you feel afterwards? Thanks!
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Vepdegestrant?
has anyone tried this drug? there is a trial opening near me for combination of this and cdk4. not sure if two drugs in trials is less safe?
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Pain
I am in so much pain (ribs, spine, jaw, hip) right now I don’t know what to do with myself. I’ve loaded up on morphine, ibuprofen, paracetamol, codeine, and nothing is even scratching it. How do we get through moments like this?
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Concern over weight loss while on piqray
Hello All, This is my first time here. Is anyone on piqray here and experiencing severe weight loss. My mother has been diagnosed with MBC and has been on Piqray for over a month (after PIK3CA mutation detected in the liver biopsy test, previously been on Ibrance). Fortunately her blood sugar levels are quite ok, around…
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ER-, PR-, Her2+ Stage IV
Anyone else out there
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Capecitabine not working
what’s next after capecitabine (xeloda) failure? I am ER+ and HER2- . Took ibrance and letrozole for 5 years NED. Then tried Fulvestrant with no luck and now capecitabine first scan shows progression. What’s next for me? I’m scared.
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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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Tuesday night MBC group
A place to stay in touch during the week. :)
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On Anastrozole. Should I start Zometa? Had one Bone met that's gone! Tamoxifen instead?
HISTORY I just started this MBC journey 7 months ago. I had one small bone met in upper sternum and some possible mets to soft tissue in mediastinum and lymph nodes in same area. Only the sternum was biopsied. ER+ (90%), PR+ (30%), HER2+. I started on HP protocal and anastrozole the end of July 2024. No chemo. End of…
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peritoneal carcinomatosis
I am looking for others who have peritoneal carcinomatosis who would like to share their stories and treatments.
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Multiple Organ Mets and on Kisqali/Ribociclib (3+yrs)
I always hear amazing stories from those with dx’d with bone mets de novo on this drug. Curious to hear from those with multiple organ mets or were dx’d secondary who have done well long term on the Kisqali/Ribociclib combo. Where were your mets, and how long have you been on this treatment?
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Kisqali side effects and timing
I was diagnosed with stage four NBC earlier this year and just started a combination of anastrozole and Kisqali. I am three weeks on with one week off. I have experienced some persistent nausea, but most concerning is my serious fatigue. I’m wondering if this improves over the months as you continue with the Kisqali? I’m…
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Husband's anticipatory grief
Big sigh. My dear husband is not coping well with my worsening disease. I've had progression of my lobular MBC, previously in bones and now to peritoneum, omentum, GI tract. I am finally going to have a laparoscopy/biopsy next week and then begin weekly Taxol. My mood is better now that these things are finally scheduled!…
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Sad News on our dear DivineMrs.M
I received this pm today. Though we all understand the inevitable, each loss still remains painful. I have known Camille for over a decade so this one hits particularly hard. “Hi everyone, this is Camille’s husband posting. I just wanted you all to know that Camille passed peacefully on January 2. My son and I were with…
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23 Years of Stage 4!
Today is the first day of my 23rd year after being diagnosed with Stage 4 MBC de novo. The past few years have been very challenging since my body has been protesting against so much chemo, but I am doing my best to hang in here. Sending love to all of you! Denise
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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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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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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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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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Her2+++ ER- PR- novo stage IV
I’m her2+++ ER-PR- novo stage IV, had multiple tumors in both lungs. I started in 08/2022 with Taxol Herceptin Perjeta. Stopped Taxol after 18 rounds and still continue every 3 weeks with Herceptin Perjeta. December 2022 after I completed Taxol all my tumors were gone so for the moment 2 years NED. Anybody longer than 5…
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ELAINE 3 trial
just wanted to share with all those who have ESR1 mutation a comment from one participant. Looks like it’s working so there is hope for an approval. This is from a different site and a patient named Irit. Hi everyone, I promised an update on the clinical trial I participate in since March 2024, so here it is. The trial is…
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Hair loss and Kisqali
I have been recently diagnosed with Stage IV metastatic breast cancer after a year being stage II. I started Kisqali last week and was told I would only have hair thinning. I am loosing chunks of hair. Would love to hear if anyone has experienced this? My oncologist told me none of her patients had to get wigs and only had…
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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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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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Our treatment histories
Hello, So far, I've been a silent member only, so this is my first post. I have been following many discussions regularly, and found this forum an incredibly helpful and encouraging place. I was wondering if we could have a thread to collect our treatment histories? Which drugs we've been on, how long we've been on each,…
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Celebrex/Celecoxib
I'm just curious as to who else is taking Celecoxib. I have arthritis but am really taking it as an anti-inflammatory that I hope will delay progression. I've been taking it daily since last June but today a Physician's Assistant refused to renew my prescription. Her reasoning was that my kidney numbers on the GFR test are…
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It's OK - No Surgery, No Chemo
Hi Community I haven't found this topic yet, so here's a start (if it's too long, I apologise in advance): I'm in Stg IV with the HER2 cancer growing from the right breast, and first discovered a grape-size lump in Aug 2018. I couldn't get a biopsy until June 2019 (SSA had cut SSI funds), directly before which my PCN said…