Has anyone taken Afinitor (everolimus)?

Posted by jaf123 @jaf123, Nov 22, 2023

I’m wondering if anyone has been on afinitor, for how long and side affects. Recent scans showed Ibrance stopped working so my oncologist is switching me to this. It arrived today, with some pretty hairy instructions and possible side affects. Being it’s the holiday, we’re traveling and visiting family and in an emergency reaching my team will be impossible I’m thinking of holding off until Monday unless someone can tell me it was no big deal. Thanks in advance 😊

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Hi, I have been taking Afinitor for about two months. Ibrance stopped working for me as well. I am not sure how it is working. I started out taking it every other day and it is amazing but I feel like my old self. The biggest side effect is I’m always exhausted so I sleep alot. Now I tend to overdo things and I am very sore the next day so I have learned to pace myself. I take 10 mg every other day. I am stage 4 with Mets to my bones, liver, lymph nodes and traces in my lungs. The hard thing to take is the Ibrance worked really well in the beginning and shrunk all of my tumors down to almost half of what they were and then they stop working. I’m not sure how this drug is working, but I will have another scan and January and that will tell me if, things are getting better or staying the same or worse. I really don’t want to go off it if it’s at all possible because I feel so good. I don’t think waiting a few days to start is going to do anything to hurt you. You should probably call your doctor and ask the doctor , I’m hoping that you have the same experience I am having. Each of us reacts a different way to every single medicine so you can’t take what I am saying and think that it’s going to be the same for you. But I sure hope so. Enjoy your weekend. Happy Thanksgiving enjoy feeling good Maria.

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@mglinkhart

Hi, I have been taking Afinitor for about two months. Ibrance stopped working for me as well. I am not sure how it is working. I started out taking it every other day and it is amazing but I feel like my old self. The biggest side effect is I’m always exhausted so I sleep alot. Now I tend to overdo things and I am very sore the next day so I have learned to pace myself. I take 10 mg every other day. I am stage 4 with Mets to my bones, liver, lymph nodes and traces in my lungs. The hard thing to take is the Ibrance worked really well in the beginning and shrunk all of my tumors down to almost half of what they were and then they stop working. I’m not sure how this drug is working, but I will have another scan and January and that will tell me if, things are getting better or staying the same or worse. I really don’t want to go off it if it’s at all possible because I feel so good. I don’t think waiting a few days to start is going to do anything to hurt you. You should probably call your doctor and ask the doctor , I’m hoping that you have the same experience I am having. Each of us reacts a different way to every single medicine so you can’t take what I am saying and think that it’s going to be the same for you. But I sure hope so. Enjoy your weekend. Happy Thanksgiving enjoy feeling good Maria.

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I’m so grateful for your response! I had no side effects from Ibrance except for low WBC, but it seems Afinitor is more of a chemo with more potential SE and I’m really concerned about taking it. Even though we all respond differently This is really reassuring! I hope your scans show good results!🤞Enjoy Thanksgiving!

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