Elecestrant muskelteletal pain

[pinkbody2]

I’m on week 4 of Elecestrant and the body aches and pains are almost unbearable. Does anyone have any advice to manage this? I’m about to tell my onc I’m done.

[Cowgirl1951]

Hi Pinkbody2. With Elacestrant being a new treatment there may not be many out there on this. I am following because I carry the ESR1 mutation and this treatment is in my future. There will be someone that comes forward that manages body aches and pains. Sending hugs to you.

[pinkbody2 in reply to Cowgirl1951]

Thanks for the message. I can’t find much info on the body aches and how to manage it but didn’t think that maybe it was because it was such a new drug. My onc thinks it’s the best option for me but I feel like I’m barely living and I’m not sure how much more I can take. I’m soooo tired and living on mass quantities of ibuprofen. I guess I did so good on my last drugs (letrozole and Verzenio) that it’s hard to not be tolerating this one. I’ve heard this drug takes time but time is precious when you have stage 4 cancer.

[Nocillo in reply to pinkbody2]

Sorry you are in such pain. I hope you find a resolution quickly. Without a decent quality of life, what do we have? Time is precious and every day counts. Best of luck to you. How long were you on Verzenio and Letrozole?

[Ppppopp in reply to pinkbody2]

Hi there, do you mind me asking how you are doing on this drug?

I’ve been on it for 3 months and the aches are painful, I’m so tired, I throw up randomly and have severe nausea.

Wondering if it got any better for you?💕

[bikebabe]

Yes i'm sorry too that you have such pain. I'm beginning to get that way with letrozole crucifying my tendons. The drugs.com reports MSK pain as a very common side effect of elacastrant so I guess it's what's there to manage/tolerate it whilst your body gets used to it. I used to do tai chi - and walked 2 miles every day - all very gentle and didn't get as much pain. Also may be worth considering some of the hypnotherapy/self hypnosis techniques. Ginger cordial to reduce the inflammatory processes.... steroid injections into the worst joints. Sort of depends if you've exhausted other options for steroid treatment and have to go with it or is there a slightly better one in that stable - girardestrant?? Am sure ive seen others with similar name on trial. A bit like palbo, ribo and abemaciclib all have same end point but have very different side effects.

[AnnieAppleseed]

Turmeric/curcumin - been in continuous human use for centuries. NO interference, may help. Acupuncture as well.

[TammyCross]

Our oncologists are supposed to forewarn us of side effects and how to reduce them. I guess a few do that.

Orserdu is an aromatase inhibitor (AI), so can have the same side effects as letrozole and anastrozole. Oddly, some of us have worse reactions to some of these than others. For the joint/muscle pain caused by the AIs, there is not a lot of specific info. It is general: ibuprophen, exercise (which feels counterintuitive but helps), and acupuncture. My oncologist conducted a study of how much acupuncture helps with pain from anastrozole, yet didn't mention it to me when I was complaining. Try it. The nurse practitioner recommended getting acupuncture from an MD if possible, so it would be covered by insurance.

The Oserdu website also mentioned reducing the dose if side effects are intolerable. I think it is so new, the effectiveness of a reduced dosage probably hasn't been studied, but it is certainly worth a try before you give up. -- I mean, if you can talk your oncologist into it.

[Ppppopp]

Hi there, was wondering how you are doing on elecestrant?

I’ve been on it 2.5 months and it’s driving me a bit crazy!

I read that you had some aches and pains? Do you mind if ask how you are now?

I’m getting nausea, abdominal pain and pretty tired.

I’m praying it is better for you? 💕