I just got my GUARDANT360 Test back and tested positive for the ESR1 gene mutation. I don’t meet with my oncologist for another month but he told me when I took the test that a positive on the ESR1 gene would make me a canditate for ORSERDU (Elacestrant). I’m presently on Letrozole & iBrance with mets in bones. I’m trying to do as much research as possible before meeting with him so, I’d appreciate any feedback on efficacy and side effects from any of you who have taken this drug.
Thanks so much,
Cathey
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PlutosNose
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I'm looking into this drug too as my oncologist had it on my list of options. She's currently absent at this time that I must change medications, and communication with the interim onc has been trying, so I did my own research today. It's shown to have better outcomes then EG, fulvestrant , etc.. Better still if you have the ESR1 mutation, and better still if you have had a long run (over 18 months) on a CDK4/6 like iBrance.
So it's great to be prepared with knowledge but stay on that iBrance for as long as possible!
I’m presently on my fourth bottle. I have quite a bit of fatigue and am back to napping daily. Your lipids should be checked regularly, as this can make them go up.
It’s very likely that since you have the ESR1 mutation, the Letrozole is no longer working.
Make sure to take the med with a high fat meal for absorption. Also, some people take the pill and throw up soon after. Taking Prilosec or the prescription form Omeprazole can help. Also, a lot of women recommend taking the pill in the middle of whatever meal you take it with instead of at the end.
There is a clinical trial that can combine the Orserdu with a CDK7 medication, but you can’t have already started the drug, so you may want to look that up. Otherwise, the Orserdu is usually given by itself.
Hi, I have been on it for 4 months. I have a tumor in my right shoulder area that I can feel. That tumor decreased faster in the past 4 months then it did on my previous meds that I was on for 11 months. I feel good but I also take vitamins and extra B12. I have a CT on February 5. I'll let you all know my outcome. Starting a new drug is scary. This is my 5th change. Blessings to you!
That's wonderful... Congratulations! This will only be my1st change & I can't imagine going through this 5 times. I hope your CT shows continued improvement, pls let me know how things progress.
Here's my update: after being on Orserdu-258mg for three months, my tumors on my bones were slightly smaller and the 3 tumors in my right side are a lot smaller. On Friday I will start taking the 345mg dose. I'm also getting xgeva shots every 3 months. Since I'm not having any problems, I get to see my Dr. every other month. I did not have any problems with the 258 dose so am hoping to not have any problems with the 345 dose.
Thats Great! So glad to hear you actually started with the lower dose and are now moving up. I assumed they always started with the highest dose on these drugs and worked down if the side effects were unbearable.. i had problems with the highest dose when i started to iBrance and had to go down to 75 mg. before the side effects calmed down. Im only 115 lbsl & it seems odd to be taking the same dose as someone twice my size.
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Afinitor +ESR1 mutation for the hive mind.
CT scan results - clinical study
Anybody with good results on Xeloda?
