Afinitor and faslodex: Has anyone been... - SHARE Metastatic ...

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Afinitor and faslodex

KarenHale profile image
11 Replies

Has anyone been on Afinitor and Fulvestrant/Faslodex I’m going to be starting in a couple weeks and I’m just wondering what the side effects are and how long it had been successful. Prior to this I have been on Ibrance and letrozole for almost 2 years and it just stopped working.

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KarenHale profile image
KarenHale
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11 Replies

I’m still on Ibrance but recently switched from letrozole to faslodex because of some increase in size of 3 lung Mets. You start out every other week with 2 shots in the butt ( one each side) for a total of three times, then once a month. People have varying experiences with the shots. I got good advice here to hold on to the arms of a chair and bend at the knee of the side of each shot. That relaxes the muscle. Make sure they warm it up. I don’t really feel the needle but it stings a little going in. Nothing I can’t handle. Then I rub the sites and walk a bit to Help it get into the circulation. I spend all day driving to get this shot, but if you are treated close to home, it doesn’t take long. I don’t notice any side effects and feel less joint pain then when I was in letrozole. Good luck!

KarenHale profile image
KarenHale in reply to

Thanks for replying I feel better😊

Bailey3266 profile image
Bailey3266 in reply to

How long s/p Ibrance regime and how are Scans results, if you don’t mind me asking. I always wonder what happens when Ibrance fails to work?

KarenHale profile image
KarenHale in reply to Bailey3266

Your tumer markers will increase. Then the scans will tell what’s going on. Good luck🙏

nstonerocks profile image
nstonerocks in reply to Bailey3266

I have been on Ibrance about 3 years. First with letrozole recently switched to Faslodex. My scans have been pretty stable except this summer 3 lung tumors grew a few mm. So switched to faslodex. I will see my doctor in December and have an idea about next scan. Usually 8 mos to a year in between scans.

Bailey3266 profile image
Bailey3266 in reply to nstonerocks

Thank you & best to you going forward.

Jennifer5249 profile image
Jennifer5249

I was switched to Afinitor and Faslodex when the Ibrance/letrozole stopped working. They took me off the Afinitor after 4 months because of lung opacities (less common side effect). Lungs cleared up after 6 weeks of steroids. Am only getting injections right now. At first the injection site felt like I had backed into the corner of the table...a bit sore for a day or so. Now after 9 months nothing, just remember to put your weight on the opposite side when getting the injection. Good luck.

Kimr2081 profile image
Kimr2081

I was on only Faslodex for 11 years and never had one side effect. Maybe a sore butt cheek once in awhile but that's it. After the cancer moved again, I was on affinitor with some other drugs in a trial and had terrible side effects but I think the doctor said the only side effect that I had that would be related to the affinitor was headaches. Everyone reacts differently I know. Wishing you the best.

hdhonda profile image
hdhonda

I am on Ibrance/letrozole which is working so far. Oncologist said that when it stopped working would do faslodex. Hannah

Snowcone16 profile image
Snowcone16

I’m on afinitor and exastamene after 4 months on Ibrance. This is my second month on afinitor. I have joint pain in my hands in morning. Not much of an appetite. Thinning hair. But that could also be from the induced menopause. I’m 47. I’ve read 11 months as an average.

Jerseygirl45 profile image
Jerseygirl45

I was just on Afinitor 10mg and Faslodex. The Afinitor stopped the pain in my arm so I was very happy. But I had some side effects, no appetite, weight loss etc. I wanted to stay on thinking it was going to work well. So they are going to lower the dose to 5 mg. Hope it works. Has anyone been on the 5 mg. Did you have side effects?

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