Elacestrant (ORSERDU)

cms2011

Hi all,

I’m hoping that one of you has had similar issues as my doctors seem stumped.

I was initially diagnosed in 2011 and had a double mastectomy and chemo.

In 2019 I was diagnosed with metastatic cancer in my bones and lungs. I was on Ibrance and Faslodex for almost 4 years. I gained 20 lbs due to the swelling in my legs and arms. When I stopped the Faslodex I lost the 20 lbs.

In July 2023 I started on Orserdu. Like many I had stomach upset issues but managed to figure out how to take it. I also had no appetite. I noticed that I was losing a few pounds and attributed it to the estrogen blocking.

In late May 2024 I had a stomach virus and diarrhea for 3 days which was unusual. In early June I started having diarrhea a few times a week. I shared this with my oncologist and we noted more weightloss. By July 10th I was having diarrhea every other day and my oncologist took me off the Orserdu and I engaged my GI doc.

Fast forward it’s November and I’ve had multiple tests for intestinal infections and a colonoscopy, and everything is fine. I’ve lost 20 lbs since June and have diarrhea almost daily. I’m scheduled for an endoscopy next week, but I’m concerned that if it doesn’t show any issues then what is the next step.

I’ve had to cancel multiple vacations and have had to stay close to home for months now. Appreciate any thoughts or suggestions.

kbl

@cms2011 I’m sorry for what you’re going through. I’m not sure if you have lobular or ductal, but it doesn’t matter for what I will ask you to make sure. Please make sure GI doc takes biopsies, even if your stomach looks normal. Mine looked totally normal, and I had cancer. I hope you can figure out what’s going on.

sharware

Hello all….I’ve been on Orserdu 345 mg for only 6 weeks. I’m not sure if it is working. My markers CA 27.29 have gone from 194 to 269 and now 422. Does anyone have a similar experience before markers started coming down or success stories to share? Maybe it takes more time to work. I see my MO this week and will also ask him what he thinks. Thanks for any responses- good or bad. Hugs and prayers for all of us. I am Stage 4 with mets in bones.

kbl

@sharware Orserdu is known for pushing tumor markers up for months before they come down. I know that’s probably of no comfort because it can also mean progression, but it’s a known fact it can do that.

sharware

Thanks so much, kbl. I’m still worried but it makes me feel a lot better knowing this tonight. I can’t find anything in the Orserdu package insert. I’ll let everyone know each month how my markers are doing. Just wanted to say thanks again!!

gigil

I am having a similar experience. I started Orserdu in May 2024 after a blood biopsy showed I had the mutation. I couldn’t get either MO to go through the results with me but the percentage looks to be low. My tumor marker doubled the first month, and has been steadily climbing every month. I have had severe joint and muscle pain. I had a bone scan and a PET scan two months ago which showed stable disease. Today on my recheck my marker was high again and at a time when I was asking for a second reduction in dosage to help the pain. Now where do I go? I’m stumped. I asked my MO for another scan to get a picture of where I am. I am feeling disheartened tonight.

sharware

@gigil i know this journey is difficult but try to take comfort in your last known scans indicating stability. I pray my next scan is better than my last one now that I’m on this drug. If your next scan shows an uptake in SUV and it’s in the area of your pain, maybe the radiation doctor will consider hitting it with SBRT. That’s helped me in the past with bone pain. I have my pelvis and spine full of mets. Plus my skull. My next scan is Dec. 5 and I’ll post when results come back. What are your CA 27.29 markers now? I hope you are feeling better today. ♥️

gigil

sharware thanks for the positive insight. You make some good points. I have another scan on January 7. My medical team is advising me to take a break until pain subsides and then lower my dose. I have never had SBRT and I don’t know much about it. My pain is in the left pelvic area. Can they do SBRT there, so close to the bladder and colon? Is it very precise. Your Mets sound like mine. My MO does CA15-3 on me. My markers are climbing but scans are stable. My Nurse Prectitioner tried to reassure me that they see this a lot in BC, there are so many variables that can affect markers. I wonder if even inflammation from side effects could cause the climb. Last one was high 1600. Here’s hoping we both have stable scans. My labs look perfect. No elevated Alk Phos or liver enzymes. I feel good when I am not having pain.