Elacestrant (ORSERDU)
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emac877 can I ask what problems you were having with fulvestersnt? I am having some problems after my injections and I am wondering if they are related at all? Thsnks
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gigil - I don't really expect the side effects of Elacestrant to be a lot different than Fulvestrant as they are in the same class of medication. I am mainly trying to get away from the injections as I have had continued bad experiences with poor technique and have been left with large lumps that continue to be painful for months, one that hit a nerve and left my leg painful for weeks. My MO offered to look into Elacestrant as I can take it orally which would be a great alternative if I do have the mutation. It may all come down to affordability and insurance coverage also.
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Well, after about 3 months, I stopped Elacestrant last week, and I'm moving on to Xeloda. I'm a bit sad, as I believe the Elacestrant was working on some things (pain had decreased, tumor markers had stabilized, labs looked good, and I had good energy). Because of scan scheduling delays, I won't ever really know how effective Elacestrant was based on scans. I had to move on, as I had triple neg mets to the skin, breast, and lymph nodes. I had started Elacestrant before the triple neg stuff was fully biopsied and tracked down, otherwise, I probably wouldn't have started it. However, I'm glad I got a chance to try it. For me, it was the most tolerable drug yet. I should note, that coming off of it, I did notice a few more hot flashes and mild joint pain.
Also, I wanted to note (since @weninwi had asked about this a while back), I did see that someone on the ORSERDU Facebook group posted about how their ESR1 mutation went away after being on Elacestrant/ORSERDU. This is anecdotal, and I'm not sure what this means in terms of treatment. However, I thought it was interesting to share.
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jsniffs,
I was just going to ask how you're doing on Elacestrant, and saw your note. Oh boy….yes, a let down….I'm sorry you didn't get more time on the drug, plus not being able to get timely scans to assess the drug's effectiveness. I've appreciated everything you've shared about your experiences with Elacestrant. I had a video appt with my Mayo second opinion doctor today and she mentioned Elacestrant as a possible next treatment for me when Xeloda stops working and depending on how my tumors may develop/change. But she added Elacestrant isn't a "grand slam" as the progression free time on average is about 4 months (I thought is was longer for persons with the ESR1 mutation). She also advised me to prepare by getting my lipid levels down. I didn't ask her if she had any patients on it. I hope Xeloda works well for you. It's been tolerable for me after figuring out the right schedule. My recent scans were "stable". Check out the Xeloda thread. Hoping the best to you.
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Read through this thread and I'm thankful for the info on Elacestrant. I quickly went through Xeloda (which I'm disappointed about because I had very few side effects) in 6 months. My PET now with lymph nodes all over my chest and bone mets. Elacestrant is my only option before moving on to IV chemo. I wish it had a longer PFS, but I will be grateful for a summer with no IV chemo if I can get it!
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kelq,
I hope you get some good PFS time on Elacestrant. Do you have the ESR1 mutation? Please keep us posted on how you do. I hope it goes well for you.
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Another update: Because I was admitted for a cardio reaction (coronary vasospasm) to Xeloda only after a few days, I was able to avoid scheduling issues and get re-scanned to see how I actually did with Elacestrant. I was able to find out that Elacestrant was not effective for me. I was very surprised, as I felt so decent and my lab work was pretty good. For my ER+ lesions, I had progression in my liver and bones. I also had progression with some ER- lesions, but that was to be expected. The current plan is to move to Trodelvy, but I am going to attempt Travera testing again (this time with Interventional Radiology doing the biopsy) to see if there are any other options.
@kelq - I hope Elacestrant is effective for you. It was very tolerable for me. I also joined the Facebook group for ORSERDU, and there is a lot more info there. It's seems like a real mixed bag in terms of success, but if it works for you, it could be great! Some people have had great success.
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jsniffs,
Thank you for posting your update. Disappointing about Elacestrant. Hope your Travera test is successful this time. What is the link to the Orserdu Facebook group? You're in my thoughts and prayers.
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@Weninwi, I am mutated. I have read that % of mutation can affect treatment success, but my MO didn't seem convinced.
@jsniffs it's my last option for an oral treatment, so I'm hoping for some time on it. Went to see my second opinion MO this morning (big urban university cancer center). She said she has 6 patients on the med since it was released in March, but none have been on long enough to rescan so she only knows what the trial data provided. Trodelvy would be my next step if it doesn't work.
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@kelq - I'm thinking it is more than just the % of ESR1 mutation that plays into things. I had about 60% with the mutation and still had progression. Maybe it needed to be even higher? I have no idea. Fingers crossed for you! I really wish I could have been on it longer.
@weninwi - Thank you for your positive thoughts and prayers. Here is the Facebook link: https://www.facebook.com/groups/1577378016092625. You can also search for "elacestrant (Orserdu) for Metavivors." I believe one person had such a good response with Elacestrant that they had tumor lysis syndrome. That is a bit scary but amazing at the same time!
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@kelq Do you remember where you read about the percentage of mutation and its effectiveness = I had this very question when I got my Guardant results back and ESR1 % mutation was not very high at all yet Onc wants to try that next. I need to change treatment ASAP as tumor markers are increasing and this is what she wants me to try next. Any info you can share I appreciate.
Thank you
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Does anyone know if Elacestant has been studies with other drugs? esp with CDK4/6 inhibitors?
Thanks
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Nkb - not sure if there are trials of cdk plus electrant but there are with another SERD camizestrant. It is not yet FDA approved.
large phase 1 trial has been ongoing since 2018 that tests Camizestrant alone or in combination with palbociclib, everolimus, abemaciclib, or capivasertib:
https://www.clinicaltrials.gov/ct2/show/NCT0361658Camizestrant plus Ibrance for ERS1 mutant cancers is not expected to stop recruiting till next Sept, so maybe could go to the FDA in 2024?https://www.clinicaltrials.gov/ct2/show/NCT0496493
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Links above aren't working. Here is the one to Camizestrant
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Thanks Perky2020- good information- too bad it won't be available until 2024.
I hope that you get a good long run on the Xeloda!
Camizestrant does seem to be a more robust drug.
I would want to try to take an oral SERD with a CDK4/6i if possible and save Capivasertib (which has been sent to the FDA already for approval ) for later.
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It looks like Xeloda may have stopped working for me. Since I have the ESR1 mutation p.Y537S (30% frequency), Elacestrant would be a consideration for next treatment. But after I progressed on everolimus and fulvestrant and before I started Xeloda, my MO wrote in my chart that she had doubts about elacestrant for me since I had progression on fulvestrant and thus may have endocrine refractory disease……and only a small portion of pts in the Emerald study had prior fulvestrant in the ESR1 cohort. I don't have enough background on the Emerald study to know how to evaluate her doubts. Does anyone have any thoughts about her doubts? I read an article that said Y537S has greater resistance to fulvestrant and MTOR….greater resistance to estrogen deprivation from tamoxifen and fulvestrant. Not sure how to understand this. Any thoughts?
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I need to look into this as well. I am probably failing Enhertu- although MO won't decide until true progression on PET, my TMs are sky high and they have always been right, but, PET only shows a few minor changes in a few bones. I am going to do a few more cycles.
I had a tempus test recently which showed an ESR1 mutation- my MO says Elacestrant would be next- although not a robust drug- it might work. it does reverse the mutation according to Cure-ious and then perhaps other drugs would work better. I have not been on an anti-estrogen in 4 years, have had Fulvestrant with palbociclib, but, my MO did not mention that as a deterrent to using Elacestrant. She said it was only approved when taken alone. ILC is usually heavily dependent on estrogen pathways and cancer often goes back to it- My MO thought I might be estrogen resistant a few years ago. I did not have the ESR1 mutation when I was on Fulvestrant.
Cure-ious did mention that you could do an estrogen reagent in the PET (vs the glucose) to determine how much of your cancer relies on estrogen- my center does not have that option, but, are getting it in near future.
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nkb,
Saw my MO today. She said rising bilirubin is related to the liver, but also the blood. She ordered another complete metabolic panel (CMP) with all the liver function tests in 2 weeks, rather than wait the usual 4 weeks. For my new complaint of upper right quadrant pain, she ordered my next CT scans sooner, in 2-3 weeks, rather than wait until early/mid Aug. If the scans show progression, she talked about what her next treatment ideas would be - maybe elacestrant (but she's not overly convinced it would be useful for me) or Enhertu (she emphasized this option) or Trodelvy (only after 2 chemos & I've had 1 so far) . She said she would consider radiation treatment if the scan showed a single liver tumor growing. I asked about getting a Travera test on a fresh liver biopsy and she said "No" as the test is not recognized by the cancer center.
nkb, Thanks for your helpful and encouraging comments. I appreciate your reminder that ILC is usually heavily dependent on Estrogen pathways. My MO clarified that since I failed on Fulvestrant (took only 3 mo) this suggests that more than just the ESR1 mutation is causing the estrogen resistance, thus elacestrant may not be very effective for me. The mention by Cure-ious about using an estrogen reagent in the PET (vs the glucose) to determine how much of your cancer relies on estrogen is also very helpful. I've never had a PET, but will asked about this possibility.
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Hi Weniwi,
It is called an FDG-PET- I have a link to it in my book marks, but, I don't know how to get the link to this site.
I hope that it is great news with your scans. I have Gilbert's which is a benign liver issue and have had elevated bilirubins with most treatments and my MO is not worried about it. I have had brief right upper quadrant pain on and off also through the years, but, no organ mets. My MO definitely wanted to try Enhertu after failure of capecitabine - it did last 2.5 years for me (according to USC which teased out this stat - the PFS is 19 months if bone only.) bone only people rarely get much info since are not in most studies due to recist requirements. not sure when we will get bone only data about Enhertu.
Over the years I have come to the conclusion that "it's mostly a crap shoot why some drugs work for some and other drugs don't work at all for someone" so I am not going to over analyze the chance to go back to orals without many side effects or labs or heart echos etc. If it works for 6 months, I will have a nice break from so much intervention. also, new stuff may come out (thinking Capivasertib and camizestrant.) I do realize that it is not a robust drug.
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Well, I thought I was going to quit active treatment, but I decided instead to try Elacestrant, and have been approved for it. Don't know what the copay will be yet, so depending on whether it can be adequately funded, this will be my next tx. I've joined the Facebook group, and read what I could on it.
I know it hasn't been out long, and it hasn't had a lot of users yet. Is anyone here on BCO still doing Elacestrant/Orserdu?
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Hope you get a nice run on this drug! Excited to hear what you experience- It is my next drug when I get off enhertu- I am looking forward to feeling better- fewer blood tests and cardiac ultrasounds and IV drugs !
is the Facebook site pretty active?
I hope this means that your break was rejuvenating- I am taking one soon to go on a trip- yay!
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ninetwelve,
Please keep us informed of your experience on Elacestrant. I don't have Facebook so can't follow that group. I haven't started Elacestrant, but expect it may be in my future as I have the ESR1 mutation. My scans are in 3 days, so will know soon if Xeloda is still working. If not, it's on to Enhertu or Elacestrant. Did you have the Guardant360 blood test? How long did it take to get the results? I hope you have good run.
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Hi nkb! The break from medications was (is) fantastic! I don't feel sick at all. Wish it could last indefinitely. I hope you have a wonderful trip and that you get some time off to get your energy back. The Facebook site is pretty active compared to here, and there is some useful information. Looks like this drug tends to send the tumor markers way high, but that doesn't correspond with progression automatically. Advice there is to scan after three months and ignore the TM's because it takes a bit longer than some medications to work on tumors. Seems like the most common side effects are nausea and generalized pain at the site of mets or past injuries.
weninwi, I really hate facebook, I don't blame you at all for getting/staying off it. If I see anything really useful there, I'll post about it here. My genetic tests were done on a biopsied tumor and the report was by a company called Caris. I have a lot of mutations, and I'm not very surprised that Enhertu didn't work for very long for me, but I'm cautiously hopeful about Elacestrant. At least the listed side effects look like they won't make me more miserable than the cancer. I hope your upcoming scan is clear and unambiguous and that your current treatment is working. And if it isn't, then perhaps we'll do this new drug together.
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ninetwelve,
My scans showed progression in the liver so I'm off Xeloda. I was offered 3 treatment options - 1.) a study using high dose Tamoxifen that I'm not interested in 2.) Elacestrant 3. Enhertu. I think I'm going to choose Elacestrant. I need a bone scan and ECHO first, so will probably start the drug in about 2 weeks. I may reconsider opening a Facebook account so I can follow the private Elacestrant Facebook group. Have you started Elacestrant? How are you doing?
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I haven't started Elacestrant yet. It was approved by my insurance but they want a $3000 copay per month. My cancer center is working on getting financial aid for me.
Because the drug is so new, not a lot of patients have been on it. The Facebook page is helpful (I can't call it Meta, and I'm never going to get used to X for Twitter - I call it Xitter now, with the X pronounced "sh"). Here's a post by one of the admins of the FB group:
ATTENTION ALL NEW PATIENTS ON ORSERDU. Btw I am a RN with 50 yrs experience; currently on Elacestrant myself And an admin of this site. Please understand this drugs efficacy should NOT be accessed until at least 90-120 days on it. It frequently ( not always) causes trending upward of both CEA and CA 27/29 tumor markers. It also frequently causes temporary pain at the site(s) of previous progression- particularly in the liver and bone Mets sites. As it destroys lesions it causes discomfort, rising markers and fatigue, usually in cycles/bottles/months 3,4 and 5 then the fatigue and pain subside and the markers trend downward. It's quite quirky but this patthappens with this drug enough times to warn people of it. Scanning too early can cause premature cessation of this treatment plan when it might be working well. One gal and her Oncologist scanned early ( during bottle 2-3 if I remember correctly) and they saw progression and decided to change her treatment plan although she continued the pills (as to not waste them prior to her biopsy). They decided to do a biopsy to help determine what treatment to use next. The biopsy was scheduled a few weeks out. When they went to scan prior to her biopsy her liver lesion they couldn't find it. Between the first scan and second the Elacestrant completely destroyed the liver lesion and improved other lesion sites too. They then decided to give it a chance and she continued to stay on Elacestrant and it continued to work well on her. If they hadn't decided to biopsy they would have assumed it didn't work for her and she would have changed to yet another treatment plan, most probably a chemo and most chemos don't work as well on ER positive patients as endocrine therapies. Too frequently we see people decide to abandon continuing this drug.So please 1. Do not scan too early -wait 90-120 days 2. Ignore rising markers theycause spike phenomenon 3. Treat and report pain but try to keep in mind it's temporary and probably means the drug is working. 4 keep a diary ( there are good diary apps) 5. Don't expect to feel different in months 1 & 2 6 same with fatigue - it's most likely temporary and in months 3,4 & 5, it does lift eventually as does the pain. 7. Drink, drink, drink water or green tea to keep your kidneys working to filter out debris after this drug works hard in months , very important in months 3-6 and scans being done 3-4 times per year. Scan dyes can be hard on kidneys.Good luck.0 -
ninetwelve,
Thank you so much…..so helpful! I did go ahead and open a Facebook account. I sent a message to each of the three administrators of the Elacestrant group, but have not had any response. Not sure why the delay? Is it like email for many people - they have so many messages and get behind? Laughed at your comment about "Xitter".
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I believe it took about a day before I got approved. I went to the link and I think I hit the Join button. Had to answer some questions first, and then had a brief waiting period.
https://www.facebook.com/groups/1577378016092625
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ninetwelve,
Thanks…did as you described and now I've been accepted into the Facebook group and made my first post. Thank you so much.
But now my birthdate shows on the Facebook Elacestrant group page. I finally figured out how to change Facebook's privacy settings so only I can see my birthdate, but it still shows on the Elacestrant group site. Maybe only I can see my birthdate, but other group members can't?? I just hate this kind of stuff which is why I've stayed away from Facebook. Ugh. Issue Solved: one of the Elacestrant Facebook administrators says she can not see my birthdate.
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I don't see anybody's birthdate on that page when I hover over the names. Years ago, just to be safe, I entered a totally false birthdate in FB, and then changed the privacy setting so no one could see it.
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I'm still waiting to start Elacestrant (Orserdu). Have run into problems with my insurance and one retail specialty pharmacy that dispenses it. The order has now been forwarded to another specialty pharmacy. I think this kink will get worked out, but it has resulted in a delay. I've been off my last treatment Xeloda since Aug 7 which makes me nervous. I did become a member of the Orserdu Facebook private group, since this thread unfortunately is not very active.
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