Hello everyone,
This is really a question for our American friends.
Was wondering if anyone is on elacestrant?
how you are doing on it.
It hasn’t been approved in the uk, but I have been lucky enough to get on the trial here. I have the ESR1 mutation and apparently this is the biggest break through!
Three weeks so far and only nausea.
Best wishes,
Paulina
I have been on elacestrant for about six months. I'm doing great. At first I had nausea, but it has subsided. I always take after eating, and then I eat peanut butter crackers if my stomach starts to feel nauseas. I also had diarrhea for a few months off and on. It has also subsided. I had a Pet scan in August and everything looked good. My next scan is scheduled for January. My neutrophils are low, but not as bad as prior treatments. I will hit four years since my recurrence in a few days. ❤️ Good luck to you.
That’s amazing!
The nausea has been pretty awful. So glad to hear it has subsided.
I gained 30 pounds on letrozole and Ibrance and have already lost 15 on this!
Great to hear about neutrophils.
Amazing about 4 years!!
Thank you so much
Yes the diarrhea🤦♀️ good to know you had it for a few months.
Are you on anything else? They are giving me kisquila with it.
Only xgeva shots for bone strength. I was on Kisquali prior to starting Elacestrant and Ibrance before that.
Oh right, thanks.
I was Ibrance/letrozole for 5 years. Started fulvestrant(6weeks)then this trial came!
Doctors are so excited for this drug!
I am 2 months out. So far no problems except knocking down my rbc which I have had trouble before. They gave me 1 unit of blood. I haven't had a blood test since. I am due for 1 on December 14. In the meantime I had and still have a big bruise on my arm after my flu vaccine 3 weeks ago. Today I have a bruise on the inside of my mouth where I bit it. Blood may be off again. I am not as tired as I was before I started this drug. And doc said I looked real good. She said not being on a chemo drug was the reason.
So far the drug is treating me well and my tumor markers have dropped each month. Fingers crossed they go down in December.
I hope 🙏 the drug is approve soon for you.
Sharon
Sounds promising, I really hope it works for you. I am also in the UK and think I might have this mutation as I am no longer responding to the hormone blockers-I am currently on Paclitaxel. Do keep us posted x
Hey! Are you being treated nhs or private?
NHS
Ah.
My insurance paid for the guardant 360 test. It’s so expensive, I think around £3000. I have read that these meds are being looking at by nice in January. I’m not sure when approval will be.
That’s great to get the Guardant. I am hoping NICE will approve Elacestrant soon as it sounds so promising x
Yes! I would imagine it will be next year! I think the Uk is about 1 year behind the US in medication most of the time!x
I am currently on my second bottle of it and located in the US. It is the easiest drug I have ever taken. I had the Guardant 360 blood biopsy to determine what would work for me after ending Faslodex and Ibrance. I have not had enough testing to make any determinations although I did have a second opinion at MUSC with a specialist there and she concurred with me being on this drug. I am hoping it will be successful. Both doctors seem to be quite enthusiastic. It is very expensive although I do not have to pay anything for it. I get it through their foundation. If you are able to be a candidate for it, I hope you will have a good experience.
I started it Nov 20 and I had a bout of nausea 8 days after starting it. With a little snack, some ginger ale, it subsided. I take it with breakfast.
any ginger products help
Hi. I started on this 6 months ago. I too have some stomach upset but it’s not too bad. I take it after dinner. The one side effect to watch is cholesterol. Mine went up significantly and so I am now on a statin. I had my first set of scans in October and will have a follow up in January. This medicine deters my appetite and I have lost almost 40 pounds (20 that I gained on the Faslodex). This is notable for me because I have always had a great deal of difficulty losing weight. Good luck 😀
Question. Are people taking elacestrant ER+ and HER2- ?
Yes!
I am too but my once has not mentioned this option. I will definitely ask!!
I think it only works if you have the EsR1 mutation. You need to get tested for that first.
tumor markers rising but scans show tumors stable/ shrinking?
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