ELAINE 3 trial

laguna24
laguna24 Member Posts: 100

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 intended to treat ER/PR positive HER 2 negative, mbc patients who have already gone through one line of Palbociclib + hormonal treatment ( for me it was Ibrance+ Letrozole- which stopped working after 3.5 years).The drugs administered in this trial are Verzenio+ the trial new hormonal drug called Lasofoxifen.Lasofoxifen is a known medicine used for osteoporosis in a much lower dose. In this trial patients get 5 mg Lasofoxifen and 300 mg. VerzenioFor me Verzenio dose was lowered to 100 mg because I couldn’t stand the side effects. After that , side effects of both drugs became pretty easy to tolerate. Some stomach pain ( not too bad) from Verzenio but changing my diet helped. Lasofoxifen almost doesn’t have side effects ( that Ive noticed so far) some heat waves that can get quite annoying but that’s about it.So far, the treatment has stopped progression of bone mets, which is great great news!I hope I can stay on this treatment for a very long time. All in all Im really grateful.I’m lucky to have been in the right place at the right time when this trial started.I hope this gives hope to all of you looking for the next treatment.Feel free to reach out with questions, if you have any. Irit

Comments

  • moderators
    moderators Posts: 8,741

    Hello, @laguna24! Thank you for sharing this encouraging update! It’s so helpful to hear directly from others about promising trials.

    Again, thank you, and we're here for you if you need us.

    The Mods

  • jvancouver
    jvancouver Member Posts: 2

    Hello, I'm also on the Elaine 3 trial at Sunnybrook in Toronto. I will keep you updated after my first scans in January

  • laguna24
    laguna24 Member Posts: 100

    @jvancouver hi and Thank you. How do you feel so far? How long have you been in this trial and what’s your original dx? Was it ILC or IDC? Were you on the first line of treatment? A little history if you don’t mind

  • jvancouver
    jvancouver Member Posts: 2

    @laguna24 I feel pretty good. The only thing I feel from Laso is that I do get hot flashes. And with the Abema, I haven't had the gastro issues that almost everyone has. I take BioK yogurt drink. Not sure if that's helping maybe. I have had fatigue with the Abema.

    I was diagnosed with stage 2b hormone pos. her2 neg IDC in 2019, but I had several lumps that had been watched for years by ultrasounds since I was either pregnant or breastfeeding for 7 years and therefore didn't have a mammogram. I don't think it was early since it was there so long and I had excruciating tailbone pain, and some sternum pain. The only scan I had was a bone scan, and it didn't pick up bone mets at the time, but when we went back in 2021 to look at the images it does look like something was there.

    In 2021 is when I did have a ton of bone pain and had a full body MRI, which showed extensive bone mets. At that point I was diagnosed as stage 4. I had radiation to my pelvis, femurs, t spine, plus zometa ribs/let. Progression in the summer and then took a long time to get on this current Elaine 3 trial. I had my first dose nov 6. The ribo was more tolerable than abema for me

  • laguna24
    laguna24 Member Posts: 100

    @jvancouver Thank you. Keep us updated. There are plenty of people with ESR1 mutation.