Experiences with

Afinitor

I have tried other options before my onc is considering Enhertu such as Xeloda, Afinitor, Orserdu, Turqap and many other drugs that are available. I think you may need a second or third opinion. Before starting Truqap I consulted with 2 other oncologists.

Spoke with my onc today and she said if Verzenio fails she’s thinking about Afinitor. Said I’m running out of options and IV chemo might not be far off after that. I’ve been on Faslodex, Anastrozole, Ibrance and Verzenio is my 3rd line of treatment. No mutations.

I've been going thru a lot of treatments, I began with ibrance and faslodex, then Afinitor and aromasin, that stopped because I got pneumonitis, the dr then switched me to kisquali and letrozole. After more progression I was on Zeloda.

I wanted to know if any of you have successfully returned to hormone therapy alone and for how long (before taxol she tried fulvestrant + ibrance for three years, then afinitor + exemestane, and xeloda. Thank you!

Other treatments we are particularly interested in include cabozantinib, afinitor, and Trodelvy. We're hoping to speak to some patients who have first-hand experience with an expensive cancer treatment that turned out to be disappointing.

I am now moving on to Exemestane and Afinitor. I would so appreciate any experience that anyone has had on these 2 meds. I’m mostly interested in the side effects. I’m very nervous since my husband had to call 911 for me last week. Thank you for listening. Lori

Started oral chemo on Afinitor and exemestane shortly thereafter. Have had gamma radiation times three for liver mets and currently have three new tumors in my liver. Will have a PET scan and liver biopsy then regroup with oncologist.

Hi I am starting Afinitor on Wednesday after a mixed scan a few weeks ago after 6 months on Orserdu. It suddenly dawned on me that Afinitor is combined with estrogen therapy, likely an AI. But doesn't the ESR1 mutation cause AI resistance? In which case does that make Afinitor less effective?

So now I’m back on prednisone and next week we will discusss switching to Afinitor because it seems I’ll develop the cough when on a ciclib drug.

That said, I hear Afinitor can also be rough, and not always effective? OR am I just down a rabbit hole. Would love to hear first hand experiences from people with experience with both/either. Thanks!!

After failing to get Afinitor approved by insurance and not receiving any financial assistance from the manufacturer my oncologist has chosen to use Enhertu infusions.She says every three weeks.Also she says I have used all the types of pills available so if Enhertu fails I would need to look into trials

In seeking out a second opinion I’ve been told to inquire about Xeloda and Afinitor. Just curious if anyone has experience with these as they don’t specifically target the PIK3CA gene mutation. Thanks!

I am now comparing Xeloda with Afinitor and wondering if you all have any information to share about side effects from these medicines. Any ideas are welcome!

Now I start Tamoxifen with Afinitor 🤞🤞🤞 I am really, really hoping I'm one of those who don't get too bad a time on this regimen, yet it seems that most DO have a fairly challenging time?

Hi everyone, I start this drug today. I wonder if anyone found an optimal time of day to take it? Thanks!

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.

Started on aromatase and Afinitor 10 days ago and having trouble handling side effects— they hit me so hard and feel it’s not worth going on. The cancer has metastasized to my liver and a small area in my spine so don’t have a lot of options….does anyone in this wonderful community have advice?

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+.