Elacestrant (ORSERDU)
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@weninwi So true. It’s so new, and some are having a great response. I am definitely thinking my issue is GERD, so I’m going to get some Prilosec, which some on the FB page have said really helps. I’m so grateful to have the knowledge you have and are learning about this drug. I’ll try to watch some of the videos tomorrow.
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Thanks to member cure-ious…….Here's an update from December 2023 San Antonio Breast Cancer Symposium on Elacestrant progression-free-survival (PFS) findings. Looking better than initial findings.
"Among all patients with an ESR1 mutation, median PFS in the treatment arm was 8.61 months (95% CI, 4.14-10.84) vs 1.91 months in the control arm (HR, 0.410; 95% CI, 0.262-0.634)."
Please read the article as it breaks out important subsets.
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I’m on bottle #3. I just started it. My numbers looked better this month, and all of my bloodwork was in the normal range, including my WBC at 6.4. My problem is I’ve started having what I think is really bad GERD. It’s lasting 24/7, and my chest feels like there is a cement weight on it. I do not think it’s my heart. I have the mets in my stomach, and I’m wondering if this is causing issues that are just starting. Anyone else on this med have GERD 24/7? I was taking Pepcid in the morning, but yesterday I started Prilosec in the morning and Pepcid last night. Not much relief at all. I’m hoping it kicks in.
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Kbl, I don’t want to scare you, but you need to get this checked out asap. Cancer patients are at increased risk of blood clots (pulmonary embolism), a potentially life-threatening condition. I know it can be frustrating to attend an ER, but you should consider it.
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@mswife I appreciate that. I’ve had silent GERD since my diagnosis, but I’m thinking since the cancer is in my stomach, this drug is messing my stomach up. The reason I think it’s GERD and not a blood clot is I’m burping like crazy, and the food sometimes comes back up just a little bit. I took the Pepcid before dinner this time, and it seems a little better after I ate dinner. I do want to give the two drugs time to work on correcting it if it is GERD. On the Facebook group, the admin said month 3 and 4 are the worst months. I’m also in touch with my doc.
A few months back I had chest pain and went straight to the ER. I was fine. I live in a rural town and hate the ER. I will keep a close watch, and if I feel it’s getting worse, I’ll definitely take your advice.
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Day 3 of the Prilosec morning, Pepcid at night. The chest pain has finally subsided. I definitely know it’s GERD, so I think one of the things I’ve been lacking is drinking lots of water as well. I’m going to try to up my intake, especially after I take the pill.
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kbl,
Thanks for sharing your problem solving and figuring out your chest pain symptoms were due to GERD and the interventions that are providing relief.
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This podcast was recently posted on the Orserdu Facebook group by a group member. The podcast was provided by Our MBC Life.
'Understanding Progression: How to Identify and Treat ESR1Mutations in HR+ MBC", by Dr Virginia Kaklamani.
"New therapeutic options are now available for HR+ MBC. Dr. Virginia Kaklamani will discuss endocrine therapy resistance, liquid biopsy/blood test, mutations, and treatment sequencing of targeted therapy. You will learn about oral selective estrogen receptor degraders (SERDS), clinical trials, and more."
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I started having new left upper quadrant pain. I assume the tail of the liver. I have never had this pain before. Started out sharp "knife like", intermittent, and now dull and continuous. I suspect it's not a good sign. I'm on bottle #5. Next scans not due until Feb 8. I'm in AZ and scheduled to fly back home to WI Feb 5. My local oncologist is unable to do any long distance consults.
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The current Winter issue of "Cure" has an article about ERS1 mutation. Dr Rinath Jelesohn (from Dana Farber Cancer Institute) is quoted: "The ESR1 gene is the gene that encodes for the estrogen receptor, a key driver of tumor initiation and tumor progression in hormone receptor positive breast cancers"......"Estrogen receptors without a mutation need both estrogen and proteins known as coactivators to become activated". "But when the ESR1 gene has a mutation, the estrogen receptor in the cancer cell changes and allows coactivators to bind to it without estrogen. In short the estrogen receptor no longer needs estrogen to become active and help cancer to grow." "This means that drugs such as aromatase inhibitors that block production of estrogen will not be effective in the presence of an ESR1 mutation". Aromatase inhibitors are: Femara (letrozole), Arimidex (anastrozole), Aromasin (exemestance).
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weninwe thanks for sharing dr Jelovsek's comment. when I was on letrozole I experienced those sharp pain, my NP told me it is a se of the drug. it was annoying and sometimes made me jump. I hope that it is not serious as you continue with Elacestrant and that it works for you.
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I ran across this thread when looking for information about the ESR1 mutation. I have been on Orserdu since I tested positive for the ESR1 mutation, though at a very low % of .4. My onc switched me from Ibrance/Letrozole to Orserdu after minor progression. After 10 months on Orserdu I had another liquid biopsy and I tested negative for the mutation. Not sure if the test didn't pick it up or it just went away with or without Orserdu's help. Has anyone else run into this?
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Hi @nancyss and welcome to our community ❤️
We really appreciate you sharing your experience. Supposedly, ESR1 mutations develop under the pressure of treatment largely, and they can come and go— but discuss this with your treatment team of course. With treatment, you may reduce the frequency of finding it, particularly in circulating tumor DNA (ctDNA) and blood, or you may amplify it as tumors progress. So, it sounds like it could indeed have changed, but perhaps you'll want to see if they can run another test.
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Hi Nancy, that's quite interesting. my ESR1 mutation was reported at 1.4%. could you share more about where the minor progression happened on I+L?
I asked my MO about whether the ESR1 mutation will be gone under Elacestrant, his response was negative. I am wondering if there are any studies on this that you could provide, Mod?
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The Facebook group for Orserdu, just had a zoom party to celebrate the drug's first year since getting FDA approval. Some of the researchers who worked on elacestrant attended. I didn't attend but had encouraged others who might attend to ask the question about weather the ESR1 mutation persists or goes away after treatment. I've not seen that anyone has posted an answer yet. One of the group's moderators just posted that she's going to invite one of the researchers back again for more Q & A.
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Nancyss, Yes, supposedly the mutation goes away quickly, like often within the first month, I guess when it become inhibited other cancer cells become more prevalent in the population. Not sure if it is likely to come back once you are off drugs or whether other mutations take over, such as Her2-low cells or other growth factor gene mutations- were any new mutations identified in your test?
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I'm officially off Elacestrant and moving on to Enhertu. My most recent scans, after almost a full 6 months on Eleacestrant, showed progression in the liver. The previously largest liver lesion actually decreased (2.7 cm down to 1.8 cm), but some smaller lesions have gotten bigger or are new. I didn't have a bone scan, but the bones visible on the Chest and Abd scans were read as stable. My labs were normal in Jan but by Feb liver enzymes had bumped up. Labs on same day of my first Enhertu infusion the ALT and AST were back to normal, so elevation in early Feb seems to have been due to Elacestrant. It was such an easy drug for me; sad it wasn't more effective. There are several new studies with Elacestrant. Here's one that is recruiting at 37 locations: https://clinicaltrials.gov/study/NCT05563220?intr=elacestrant&page=2&rank=15
Thanks to all who contributed to this discussion.
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Just popping this thread up. I’m almost done with month eight. I hope others on this drug are having a good response. I have not been scanned since starting, but my tumor markers tell the story, and they are down.
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@kbl - Thank you for updating us and for bringing this thread back up! It's great to hear that your tumor markers are down. Good luck, and keep us posted on your progress!
The Mods
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@moderators Thank you.
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I wanted to share my first experience with Orserdu. I can't believe how many people have no side effects I want to know what you do! I have the ESR1 mutation, and I started 345 mg of Orserdu on a Thursday. I felt fine on Thursday and woke up Friday to a body on fire. I took the second dose and thought my body just needed to move but the intense pain in every bone in my body (even in bones no cancer showing) pain to the point of nausea that would not stop. I also developed a migraine behind a left eye where I do not have a history of migraines. Also, sudden muscle weakness. It was found my body was breaking down muscle and bone at an abnormal rate. I have had two IV flushes to help remove the lactic acid build up in my body. Any one experience anything like this? I am terrified of this drug now. My MO wants me to start it again at a lower dose.
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@streality I’m so sorry you’ve had this experience. I don’t blame you for being nervous to try again. I have a question, if you don’t mind. Are you taking the pill with high fat and at least 800 calories? Also, I made sure to take the pill in the middle of my meal and not at the end. I had forgotten my pill once when I went out for dinner. I had a nice fatty fried shrimp meal, came home, and thought no worries, and took the pill a half hour after I ate. I have never experienced so much pain. I literally felt from my throat all the way to my stomach was on literal fire for 24 hours. It was horrendous. I never made that mistake again.
I did not have migraines.
Please keep me posted if and when you try again.
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Thank you so much for sharing your experience, @streality, we're so sorry it was so negative. Your hesitation to try again is completely understandable! If you do decide to try again with a lower dose (which can potentially limit your side effects), we hope it's a better experience for you!
The Mods
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Hello! Has anyone heard about the Elevate TRIAL that includes Elacestrant and a CDK4/6? It’s in Phase 1B I believe. Exciting it’s heading in the right direction but curious if anyone here is on it or has more data. Thank you
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Hi, just wanted to leave my experience with Orserdu here. I started it in April as my second line after Kisqali/letrozole failed me. But I did get a good run on K/L - 49 months.
and now, I've progressed on Orserdu after 6 months. I had a PET scan last week which showed my extensive/innumerable bone lesions with more activity than my last PET scan in March 2024. so I'm really bummed. I'm moving on to Piqray and fulvestrant (and still goserelin and zometa), which will be my 3rd line in the metastatic setting. No new mets in other organs, still bone only, so for that I am grateful. and grateful for options. but, dang!!!!!! disappointing.
Orserdu was pretty easy. I lost some appetite with it, but that was all. my arm hair grew back, leaving me with keratosis pilaris on my arms. I wish everyone good luck with this drug!!!
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I have a general question about Orserdu as I am just planning ahead for when/if my current treatment fails.
My MO said that since I have the ESR1 mutation, Orserdu may be an option but since I was" less than 12 mos PFS* on a CDK4/6 inhibitor, the benefit from Orserdu may not be substantial".
Does anyone have any idea what this means? I do have an appointment with her this week so can ask, but I like to know what's going on too!
Thanks!
*progression free survival
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For those with ESR1 mutations, there are now more options available that, in my opinion, are better than Elacestrant alone as a monotherapy. There’s a clinical trial combining Elacestrant with a CDK inhibitor. and of course, ARV-471, which is a great medication currently on the fast track and hopefully will be approved by the end of this year or early next year (fingers crossed for sooner!). There are also clinical trials combining ARV-471 with FDA-approved CDK inhibitors like Ibrance and verzenio, as well as a new CDK7, which is still in trials. there’s also a promising trial that combines Lasofoxifene (a SERM that has shown antitumor activity in ESR1 mutations) with Verzenio. There are many options coming our way, but be sure to explore all your options before starting Elacestrant, because once you begin, you’ll be disqualified from those trials.
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