Hello . Has anyone any experience of being on Elacestrant ( orsedu)?
It is a new hormone treatment for advanced metastatic breast cancer , just authorised by NICE in the uk . It is for those people for whom a blood test shows that they have acquired a gene which makes the cancer cells resistant to hormone oestrogen blocking therapy. But it’s more likely to be the case if you have been on other hormone treatments a long time before they failed.
I was only on ribociclib / fulvestrant for just the qualifying time of a year before it failed so I may well not have the gene .
I am 76 and not just looking to extend my life on and on -life is declining but that’s ok . I am taking tamoxifen at the moment having declined toxic chemo and treatments as third line treatment.
I’m doing okay on tamoxifen In terms of how I feel, although there is no monitoring of it so my oncologist has no idea if it’s doing anything.
I think it may be unlikely that anybody else has much experience of this drug because it is just hot off the press so to speak after a small research study. My oncologist is very focused on research.
Unfortunately I haven’t been able to find any other threads on the forum about elacestrant, but hopefully someone here has an experience they can share with you.
In the meantime, you may find our website information about the drug useful (although it sounds like you are very well informed): Elacestrant (Orserdu) | Breast Cancer Now.
Please also know that our nurses are here to support you - with clinical questions or for a chat. You can get in touch with them here on the forum on the Ask our Nurses your questions board or on our helpline 0808 800 6000 which is open Monday to Friday 9am-4pm and 9am-1pm Saturday.
Hello. I will likely be going on this drug in the next couple of weeks, pending the results of the test. I am primary endocrine resistant and progressed on Ribo:Letrozole. I then had nearly a year on capecitabine. I’m nearly 53 and was de novo MBC at 51.
Please let me know how you get on on Oserdu.
Thanks for this . I decided finally today that I am not going forward for the blood test ( I had to agree that if I hade the mutation that I would start the drug ) . In the end my decision was mainly that at 76 heading to 77 I no longer want the constant round of blood tests / scans and appointments and possible side effects . I only made the minimum time required on Ribociclib and Fulvestrant and was taken off Cape after 4 cycles as it never worked . I know that had this drug been on offer by nhs last year when I had more energy and resilience to treatment I would have definitely gone for it but I no longer have what it takes so am concentrating on time with friends and family and the odd outing . I can’t do much but that’s ok . I take one day at a time . I’m also pretty sure if I were younger I would have tried . Of course I will always wonder ‘what if’ but at the end of the day I’ve gone with what my emotions and energy said . I do hope of you get the drug it works well for you . All the best
Elacestrant is in simple terms an oral version of Fulvestrant. Prior to it bring prescribed a blood test for ESR-1 mutation is done as the research showed people with this responded better.
People who have been on Tamoxifen or Letrozole and had this fail often have this mutation.
Its been proposed for me as my next treatment line and apparently a number of people have been put forward for the blood test at my hospital.
Christie in Manchester did a trial and it performed better than Fulvestrant, i dont remember whst it said about side effects.
If i am prescribed this (March/Aprl) posr CT i will try and provide some feedback.