After almost 6 years of being stable on Ibrance and letrozole I now have some very small progression into both my hips. My initial metastatic disease was in my lungs. I also tested positive for a mutation that frequently happens. That being said I am eligible to take the brand new drug Orserdu/elacestrant. Just released this past January. It's the first new estrogen blocking medication developed in 20 years. Praying I tolerate it as well as I did the Ibrance. If anyone is on it I'd love some feedback. There is a site specifically for Orserdu and I am now a member. It seems to be well tolerated.
Good news for all of us that new treatments are becoming more available!!!!
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HopeinNJ
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I have been on Orserdu for two weeks. I was in Piqray which was difficult as it gave me diabetes and diarrhea.
I had to find a nausea medication as it upset my stomach big time. I take the anti-nausea medication about 15 minutes before the Orserdu. Orserdu is very large and cannot be cut, so I get my throat nice and wet before I take the medication. I haven’t felt so full of energy.
Tomorrow I go for my first blood draw on Orserdu. We’ll see. Hoping my numbers are stable. At this point I recommend this medication. Reenie
Thank you to your feed back. I'm waiting to get it approved as so far my Horizon Blue Cross /Blue Shield has denied it! I'm told that they always deny the first claim. Such a game....and playing it with someone's life. They are delaying my treatment. I pay 1200 a month for this insurance. I did not take the Medicare insurance for this specific reason.
I only just spotted this comment about your insurance. We have the same NJ insurance! I’m so glad to hear you got it approved in the end!! Wishing you well now going forward with this drug
Rants are completely ok…you can’t keep this stuff bottled up. So glad you finally got this sorted out and got the meds with no copay. I too had to get an expensive prescription insurance just as I was retiring…and got diagnosed ! So disgusting that they have to stress sick people with this kind of gamesmanship…but now, deep breath and do well on this new opportunity to feel better!
I am on month 5 of Orserdu and it has been easy. I had a little queasiness in the beginning but none now. Also less fatigue than on Ibrance. When the fatigue does hit it is usually resolved by a quick nap. So far it is keeping me stable.
I’m not on this yet but it’s in my drug line up and my doc is eager about it. You got a fabulous run on iBrance so that hopefully bodes well for you with this drug too! Alternatively push the iBrance a bit longer? Depends perhaps where exactly in the pelvis the Mets are but if not in an area to worry so much about the effect on movement than maybe you can stretch out even more time on iBrance. My pelvis is riddled with cancer but I move fine , I just make sure to exercise well! And keep the joints moving and glutes strong.
Mine started in the iliosacral joint of one side and pregressed to the ilium of the same side. Then in the rami, down leading off the sit bones and towards the public bone, now it’s in both ilium! I had a bit inside one socket and that started to give me a bit of bother but maybe the drug is working because that all went as fast as it came on
Hi HopeinNJ. First of all congratulations on your long run on Ibrance and Letrozole. The mutation you tested positive for had to be the ESR-1 mutation as that is what Orserdu targets. Since this drug is not at all similar to Ibrance and is a hormone blocker you would have to consider how you tolerated the Letrozole more so than the Ibrance. The biggest side effect acknowledged from the clinical trials that gave it's FDA approval was nausea so I would be ready to have anti-nausea agents on board. Good luck with your new treatment plan and I hope it gives you a good time of PFS. Take care.
Greetings! Hope that your early experiences with Orserdu are positive. FWIW, my wife was on one of the trials for Amcenestrant, a competing oral SERD to Elacestrant (Orserdu) and it was the best quality of life of any of her six regimens to date (including her first 3.5 years on Ibrance and Letrozole). She was on the trial for 13 months and I also remember other folks from this site on the trials for Elacestrant, who had similarly positive experience as far as side effects. Hoping the same for you!
She just began Eribulin, a drug that’s been around for over a decade, last month. The side effects have been pretty tough, but her first tumor marker readings were the best in the past year and a half. Following her initial treatment with Ibrance and then the oral SERD trial, she was on Xeloda, Doxil, and then one of the other newest drugs, Enhertu. The Enhertu also had some tough side effects, but it was cutting her tumor markers (which had increased to over 4000) in half with every treatment…until it stopped working after about six months. So we’ve moved on to Eribulin, which has really kicked her butt, but has continued to bring down her tumor markers. She will have her first scans on this regimen next month.
I was put on Orserdu about 2.5 to 3 months ago. No side effects at all but blood test from yesterday showed tumor markers higher than they’ve ever been. I can also tell from the skin metastasis and the breast that it’s going in the wrong direction. I’m going to jump ship and go for the chemo IV Taxol. I’m scared to do it but I need to turn this around quickly. I’m almost completely bedridden so something needs to stop this train soon. I’m hoping I’ll respond to Taxol.
Dear HbbM - - -Your situation sounds dire. I hope that you and your oncologist can turn this around quickly. Strangely, you do not mention your oncologist in the decision making. Are you going to be okay?
. I have been on Orserdu for 4 months. My 27.29 is 600. I have new cancer in my other breast. Next week I go on Taxol. My quality of life will go down. Three weeks on and one week off. Getting a port on Tuesday. I have a company and the staff are wonderful. Storesmart.com. I enjoy designing products.
Going to do 3 months then a pet scan. I like to go on vacation to celebrate our 50 th wedding anniversary. No party. A vacation once a month. Something to look forward to. We usually do a short driving trip. I hope I can continue on the treatment.
Be strong. We only have each other.
Ps Orserdu was developed in my oncologist’s lab at MSK. Memorial Sloan Kettering in NYC.
Glad you had such a nice long run on Ibrance and Letrozole. I am hoping for the same. Best of luck to you on your new treatment. I hope you will do very well on it and have minimal or no side effects. Sending hugs and prayers.
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