Elacestrant (ORSERDU)
Comments
-
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.
0 -
@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.
1 -
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.
0 -
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!!
1 -
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.
0 -
@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. ♥️
1 -
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.
0 -
@gigil - yes they can give SBRT radiation to your pelvic area - my first progression was in my pubic symphysis area and I received SBRT radiation there. The radiation is very precise and won’t affect your bladder or colon. And don’t forget, the bloodwork has both live and dead markers and doesn’t know the difference. Yours could be dying off, driving up the number, which is what we hope is happening to us both. Google will explain SBRT so you will feel comfortable talking to the radiation oncologist. My labs looked good too except for the markers.
0 -
sharware. That is exactly where I am experiencing progression,, though slight in that very same pelvic bone. I had a fracture on one side, now healed before I knew it was Mets. I fell on my rear end on a metal ramp. I could hardly sit or drive for a whole summer. Now the other side seems to be causing me inner hip pain, toward the pubic area. I haven’t been able to walk without support from a walker. My shoulders have been very sore as well. I have taken a small med break to see if a lower,dose might cause less pain. I was also having muscle spasms elsewhere. I have been off for a week or so. I wonder how long I dare test this out. It does seem to be improving some each day. My doctor pretty much left it up to me. I have a PET January 7. I am not quite sure how long I feel safe to test this out before I start taking the med again. I know this is a slow growing cancer, but how slow? Yikes!
0 -
Hi everyone- here’s the news - my CA 27.29 is now up to 599 from 422 last month and 200s before that BUT PET scan on Dec. 5th says cancer in my spine is SUV 7 down from 15 SUV and my peripancreatic nodes have resolved and no activity there. So good news with no progression and some resolution but why are my markers so high? I see my oncologist this Thursday and will see what he says. I know some of you have said it’s common for markers to go up but when do they start to come down? Prayers continue…….for us all. Sharware
0 -
@gigil - I hope your scan came back with good news.
is there another thread on Orserdu? This one has little activity and I know more are on this drug than are posting. Am I in the wrong place?mods???
0 -
Hi Sharware I occasionally post on a thread I started when I moved from Ibrance/Letrozole to Orserdu at the end of March last year. I have found this med very easy and hope for a long run. Many people mention that their markers go up but they also seem to settle back down after a while. Mine didn’t do this but then again many people mention weight loss and I have put on weight. My latest scans this month were stable. Good luck.
0 -
Hi Ladies, I am new to this thread. I meet with my MO later today to have the initial discussion to start Orserdu but I have already seen the approval note from Humana and received the phone call from the office to set up the delivery. I guess my MO means business! And wow, at a cost of $26,000 a month this drug hopefully works! I am thankful I have a yearly out-of-pocket limit which I will meet immediately. I will check in once I start and see how I do.
0 -
Hi Sharware and everyone else. I had my scan in January and it showed some progression. My doctor ran a blood biopsy and while we waited for results, I continued to take the Orserdu. I was having more and more muscle and joint pain. When I ran out of meds about a week and a half ago, she told me to discontinue until we have results. I am so set for a radiology consult this coming week. She mentioned Xeloda as my next med. my report came back with four mutations. The ESR1 was the only one relevant to treatment. The others had to do with mutations that affect other things like likelihood of spread (duh) and a tendency toward cardiovascular disorders or blood cancers ( or maybe just aging). I am 75. I am wondering how much the Xeloda will help what I have going on with the ESR1. Does anyone have any experience or knowledge about that?
Spring has sprung here in Florida. We have had some cool weather. I hope the weather settles down around the country and that everyone is seeing better weather.
0 -
Hi everyone. I started Orserdu on Wednesday. It hasn't been too bad but tonight about 15 minutes after I ate and took my pill, wham…I have extreme nausea, gerd, etc. I have taken everything I can and drank a glass of mile with no reprieve. Is this normal? Every night for a couple of hours after I take my pill I have had nausea, but this is major. I appreciate any input.
0 -
@intolight Hi. I learned the hard way. Please take the pill in the middle of your meal, not after. I forgot one time and took it a half hour after I ate. I’ve never felt as on fire from my throat to my stomach, and it lasted 24 hours. Try to take it at the same meal every day, and make sure it’s your highest fat meal. I hope that helps.
0 -
@kbl Thank you. I did take it in the middle of the meal but somehow I think it still got stuck. I don't eat a lot of fat but I am trying to adjust. We were having homemade hamburgers. Maybe I should have added fries with that! Thank you for the 24 hour note too—I am still struggling this morning and an glad to hear this is "normal." How are you doing? I have been thinking of you.
1 -
@intolight I have also heard some take it with peanut butter. Maybe if you eat that, it would help.
I’m okay. I tried to hike a little today, and my body was rebelling. I got about a mile, and my body was giving out. My husband made me sit down and went and got the car. At least I wasn’t the one where the fire truck and ambulance came. Someone else did a little more than I did and needed help. We were at Amicalola Falls. A little too steep for me.
Other than that, how are you doing? Thank you for asking. 💕0 -
@kbl I am not feeling too well after last night's episode. It took about 20 hours for the pill to clear so I am just now feeling a bit better. I have a headache and stomachache and of course fatigue. But it is doable. I am thinking of skipping tonight's dose since the pill maybe just entered the stomach and I don't want to take too much at a time. I have been babying myself with bananas, rice and applesauce all day so I have kept my nutrition up. Part of my problem is I am also taking antibiotics for a UTI. I probably should have got permission to wait until the antibiotics were done to start Orserdu. I just usually don't have any problems taking medicine.
I asked how you are doing because I thought I read you were on hospice. Am I wrong? Your hike sounded fun. I know I can't do that. I can do things like dishes or dinner for about 15 minutes before having to sit down. Anything more streneous does not get done. I have been going to cancer PT for about three months now and that is helping but not with stamina as we don't push me that hard.
0 -
@intolight I’m so sorry that happened. I totally get it. It’s miserable. I only had it happen the one time. I hope it doesn’t happen again for you. I totally understand the stamina. I try to push myself, and it’s getting more hard as the days go on.
I am on hospice, you are correct. I’ve been off treatment since September 12th. Things are definitely starting to go downhill, but I am trying to do things while I still can. I think today was the last time for any kind of adventures with hikes. It’s just too much for me, and I am having issues with my legs and foot now. I am just a little different than most who wait until the last minute to go on hospice. I stopped treatment and went on hospice three months after, in December. I’m also starting not to be able to eat as much and have more nausea, which is letting me know the stomach mets are increasing. I have been very fortunate that I’ve gotten time without having to go to anymore doctor visits or having to get constant bloodwork. I felt that if I was done with treatment, hospice was the way to go. They are there for me 24/7, and if I have any symptoms whatsoever, they will get me medication to help. I’ve tried a number of antinausea meds, and nothing is really helping at this point because of the mets in my stomach.
As I progress, they will make me as comfortable as possible. I chose quality over quantity and did not want to do any chemo or combinations with chemo. I tried Enhertu twice, and I was in bed for ten days both times. I am very fortunate to still be here six months after stopping treatment.
I don’t know if you remember Best Bird. She was down to something like 70 pounds when she went on hospice. I think she made it seven months, even being that tiny.
Please keep me posted on how you’re doing.
0 -
Anyone have an allergic reaction to Orserdu?
I got a blistering rash. I went down in dose, but I am afraid I am not going to tolerate Orserdu.If you have had a reaction, please tell me more, such as what the next course of action was, if you stayed on it, and what other meds you are taking. I am curios if Zepbound changes the absorption and might actually be causing toxicity.
Thank you!0
