Experiences with

Afinitor

Hi Ladies , anyone on the forum developed rash while on exemestane and afinitor, some help needed, thank you 👌

I have had bad side effects from Afinitor. My oncologist has taken me off Afinitor and will be putting me on Xeloda. I gave a week of the 10mg still in the blister pack and two weeks of the 7.5mg in their blister packs. The 7.5 mg is the generic form of Afinitor.

Hello, I will be starting Afinitor and Aromasin this weekend. I hope those of you on this regimen can help me b sharing your experiences. I am starting on 5mg for afinitor because my MO wants to observe if there are any side effects I can’t handle.

my onc lowered my Afinitor to 7.5mg. The side effects were severe; mouth sores, muscle and joint pain, extreme change with taste buds, no appetite on 10mg. Did anyone else have to decrease the afinitor dosage? And did the side effects improve?

My dr thought it was Afinitor that I was allergic to. I started Aromasin again. 5 days later I had a rash all over and my arms and legs are swelled with Lymphodema. It’s really awful. Any suggestions for the rash or Lymphodema. I never had Lymphodema before this.

Now I take Aromasin and Afinitor. Few people seem to be on these meds. Aren’t there newer ones? Please tell me what meds you’re taking for bone and liver Mets. ER+.

Seco d, doctor thinks low 1/2 dose of Afinitor will decrease likelihood of mouth sores. Anyone with experience on this?

The tamoxifen and afinitor I was on for two months has done nothing. I had my CT scan six weeks early on Tuesday, read it on my portal on Wednesday and today met with my onco. She said the last option is Xeloda (capche.....(generic name).

Not sure if I go with a parp since I have brca 2 mutation or xeloda or afinitor plus aromasin? Do I go for a trial? Would love opinions or med combos that have worked with those of you with lobular. Thanks! ❤️ Mandy

We’re currently contemplating the following options: Exemestane This is most commonly given in conjunction with Afinitor at this stage but Affinitor showed high of a risk for pneumonitis in the trials so that’s not an option for her (she previously had a very severe case of oneuminitis and her lungs

I am now going to be put on this since it spread to my liver and her treatment of tamoxifen and afinitor did not work bc my scan last week showed it has continued to spread in my liver. She mentioned I would be taking 8 pills per day broken down into four pills twice per day.

I've recently switched to Afinitor & Letrozole. The side effects, joint & muscle pain, of Letrozole are taking a toll. Currently, I take both in the morning with just water. Would taking them both at night help? Or maybe Afinitor in the am and Letrozole in the pm? Any tips appreciated!

Afternoon Ladies, I'm on Afinitor, Letrozole & Xgeva. I'm doing really well on this combo, as far as getting rid of the cancer, but quality of life...none. I literally sleep about 20-22 hours a day. I get up, I'm up about an hour and then all I want is to go back to sleep.

She told me to stop taking the tamoxifen (20 mg. and afinitor) that I had been on for two full months. both were taken daily I was waiting for the new drug to come from the speciality pharmacy so still waiting.

She then put me on tamoxifen (20 mg.) and afinitor. I was on that for two months and it appeared from the bloodwork, she did not seem to think it was working.

Anyone else on this combo or have any experience with Afinitor?? I need some good thoughts... and encuragement! thanks----Carol

It appears the tamoxifen and afinitor may not be working for these liver tumors. It is already in my lungs and spine for a while. I have one friend that lives in FL and they had agreed (like three years ago) that they would come and clean out my apt. when that time comes.

My doctor agreed I could start on Exemestane (Aromasin) and add Everolimus (Afinitor) when I came home. So, after another fright when it looked like strikes in Reykjavik might cause cancellation, we did actually make it!

Here is what I’ve been on so far: 1) Fulvestrant and Fasoldex/Pablociclib for 15 months - stopped due to progression in the bone 2) Piqray/Alpelesib and Letrozole for 1 month - had to stop due to severe rash 3) Afinitor/Everolimus and exemestane for 8 months - stopped due to pneumonitis and progression

Overexpressed cyclin D1 and CDK4 proteins are responsible for the resistance to CDK4/6 inhibitor in breast cancer that can be reversed by PI3K/mTOR inhibitors I’ll post sometime later (long post) an update on my wife’s treatment, but unfortunately she had to stop palbociclib after 29 months and is now on Afinitor