I just developed the ESR1 mutation and went on Faslodex and switched to Kisquali. I was wondering if anyone has this mutation and how your meds working.
I’m only looking to hear about ESR1 stories and if it impacted your treatment or progression and how you are doing. If you do not have the mutation please don’t respond.
Also aware of the new meds.
I’m concerned I could blow through treatments.
DDIL1, I don't have the ERS1 mutation that I am aware of , however the new oral serd was approved specifically for hormone positive her2- patients with ERS1 mutation . It sounds like it works well against ERS1 .
yes, I am aware of the new drug. I was just wondering how it has affected peoples treatments.
I'm not sure if I have that mutation, but my Oncologist put me on Faslodex and Xygeva to strengthen my bones. My body's been resorbing Calcium from certain areas. Mostly from my pelvic areas around the bolt attachments that hold my artificial hip joint in place, but from spinal areas as well.
Did your read that Elacestrant was approved by FDA a couple of days ago and it’s specific for your mutation?
I have it and have the same concerns. Ibrance and Faslodex stopped working and my relatively normal life disappeared. From the little research I've done, CRISPR would be the way to go but isn't being used yet. Oral SERDS may work. I'm on Enhertu, which I find difficult to tolerate (nausea, fatigue) but easier than Paclitaxel. Life was almost normal on Ibrance and Faslodex, so I'd love to find something like that again!
am concerned I may have this as well - I blew through AI's and CDK 4/6 inhibitors and am now on oral chemo - I am going to be asking my onc specifically if I have the ESR1 mutation as I only got a few weeks out of AI's + CDK 4/6's ... so I assume, whilst I am 100% ER+ and 100% Her2 negative - I must be resistant to hormone therapy. Capecitabine (oral chemo) - the fatigue is real and I want my life back - as does my 15 year old daughter - don't want her seeing me sleeping all the time
I was in a trial and they found it immediately. I was lucky it was caught before progression and complete medicine failure. But I know 40% of women may have it and not know because their oncs may not do the testing just switch lines of treatment. I hope you can get geonomic tested to see why you are going through lines so fast, and if you have any mutations so they can identify what should work best. All the best to you
I do not
Another response that does not answer the question you are asking. From the data, it looks like elecestrant works for ESR1 -- but not for non-ESR1. To find someone with ESR1 who has taken it and find out how they did, you would have to find someone who was in this clinical trial. Approval is too new for any anecdotes on how this oral SERD worked for someone.
I think you are also asking how Kisqali worked for people with ESR1? Hope you get some answers here. People who are ESR1 who are on Enhertu and Capecitabine just commented on side effects; perhaps do not yet know how they are working.
FWIW, I am not ESR1 (or not yet), but was in a trial with another oral SERD. It completely cleared up my mets, for a year, with no side effects. So hoping this one works as well, but longer, for ESR1.
your story is so hopeful!
honestly I just wondered people’s experiences with ESR1 who may have it long time and how it’s affected their treatment or progression. I know the drug’s that are out there and I know the studies. I’m just asking how people are doing with their current treatment. Nothing to do with the new drugs at all. Just how ppl are doing. That’s it. Just wanted to hear stories of ppl experiences.
I realized that, understood that, and mostly you were not getting that answer. But now you are.
hi Tammy, can you tell me the name of the oral serd trial you were in? Or the name of the medication?
I keep answering this, but always have to look it up. Note that it is not helpful for the person who originated this string, but may be for you if you are not ESR1. The project title was ZN-c5-001. The company is Zeno Alpha. The medication was called ZN-C5 (that is, it didn't really have a name yet).
I don't know that the study is still in progress or whether it has moved to a new stage. While I am waiting in my oncologist's office, I review the list of studies she keeps on the wall. This one is not there now. I can ask her about it. I would love to know the outcome of the phase I was in and haven't found that anywhere.
thanks so much for responding. I did the gene test last week. Should have more information this week hopefully.
Good luck with that. I had it last year and the only finding was that I have one mutation that there is no specific treatment for, and they don't know whether my mutation is protective or the opposite!
Actually, I did find something. Sounds good but early:
ZN-c5: Oral SERD for ER+/HER2- Advanced or Metastatic Breast Cancer
Based on the interim results from multiple ongoing trials, ZN-c5 has demonstrated the potential to support best-in-class tolerability in both monotherapy and combination settings, with strong clinical results observed. As of May 11, 2021, the following data were collected:
Monotherapy Trials (Expansion and Dose Escalation)
In total, 56 patients with 2 median prior lines of treatment were evaluated for safety and efficacy. Across all doses from 50 mg QD to 300 mg QD, the observed CBR was 33% and the ORR was 5%. ZN-c5 generated 2 PRs at the 150 mg and 300 mg doses. Adverse events (AEs) were found in less than 10% of the patients and there were no observed cases of bradycardia, visual disturbances, QTC or dizziness. Of note, treatment related diarrhea adverse event rate was 3.6%, with only grade 1 or 2 events observed. The Phase 2 monotherapy trial has been initiated and Zentalis may take multiple doses into this study.
An oral dose of 50 mg QD (n=16) demonstrated a CBR of 40%, with many patients in this dose cohort remaining on study drug and in the trial. Final determination of the monotherapy RP2D will occur following completion of this 50 mg QD dose cohort.
Combination Dose Escalation Trials with Pfizer’s CDK4/6 Palbociclib and Lilly’s CDK4 and 6 Abemaciclib
Tolerability data for ZN-c5 suggests it could be best-in-class in oral SERDS, making this candidate ideal for further evaluation in combination. The two separate trials will continue to enroll patients and the Company expects to report interim results in 1H 2022 from one or more of these trials.
I was on the monotherapy 50 mg. Had full resolution of mets, but after a year I flunked out of the study.
Oh, no. They stopped testing the oral SERD for mbc. Instead, they are focusing on two other meds that were also successful, but for a wider range of cancers. I guess I was lucky to get it when they were still testing it.
August 2022 report: "Therefore, Zentalis will discontinue the clinical development of ZN-c5, its oral SERD, and ZN-e4, its EGFR inhibitor, following completion of its existing clinical trials, which are closed to accrual, in these two programs."
thank you for all the info!
Hi DDIL1,
I found out I had the ESR1 mutation after Letrozole and Ibrance stopped working after 18 months, that was in 2019. It has been helpful knowing I have this mutation, as I don’t waste my time with meds that don’t work. I believe I’ve shared with you the list of meds I’ve been on since 2018 but here they are again.
Letrozole and Ibrance (18 months and discovered I had the ESR1)
Faslodex (6 months)
Clinical trial SERD (6 months)
Xeloda (3 months and was really sick when taking this med)
Tamoxifen and Verzenio (18 months)
I just recently found out I have progression in my liver and will start Elacestrant.
I just found out I have liver progression too. I am going to my old oncologist in nz in a few days. I will ask about that drug. Thank you.
Good luck!
So you are on 4 years with ESR1. I was concerned when mine showed up in just a year after diagnosis. This is hopeful. I think to have the best drug immediately might be a good decision for me, to move off faslodex and to elecestrant right away to hopefully avoid progression. I hope it works for us!
Yes, it has been four years since ESR1 dx (five with MBC). I was going to partake in the clinical trial for Elacestrant when I first learned I had the mutation but wasn’t eligible due to the fact I was not post menopausal. So glad it is now FDA approved and I’m now post menopausal. I plan to check in with my oncologists at Dana Farber and Mass General to see what new clinical trials are in the works (for the future). Both of them specialize in ESR1.
Can you keep me posted on what you find out? I’ll do the same. I’m go to Mayo and Northwestern. If I hear or learn of anything I’ll share. We need all the intel we can get!
Please keep me in the loop too. I have the same mutation
well!!! I just received my Guardant360 and ESR1 is gone now. They are re- running blood to check if that is true. It now shows PIK3ca, ERBB2.
I should have test back soon on ESR1.
That is pretty wild! I have read that these cancer mutations change over time and it is so good that we have liquid biopsies and don't have to get actual tumor samples for analysis.
I went on faslodex and kisquali for 3 months but markers still climbing. So ESR1 gone but I now have colon Mets . Damn this lobular
wow! That is crazy. I read that about 50% of ER+ women with METS get ESR1 mutation basically after failure point with an estrogen inhibiting drug. In my case that was Letrozole. Ok I should get this test done I think then . How long do results take and where did you go to get the draw for that? Labcorp?
Will do!
i have ESR1 mutation, i had lobular breast cancer at 2016 march was taking letrozole about 17 months ago found met to sacrum, i then start Fasoldex injection and verzenio 100 mg, i doing well, about 10 month ago i had a pet svan the bone healed. my onconlogist said will svan again next month. i never have pain.
About to start Orserdu (elacestrant)
Do you work with MBC? 
How long until Ibrance makes you feel better?
What type of Breast Cancer do you have?
