Connect
Allergic Reaction to Afinitor
Hello, I started on Afintor and Exemastane on January 24 after 19 months on Kisqali and Anastrozole which unfortunately stopped working. I was working through some side effects then at 3 weeks in I developed a cough and lung congestion and a rash (all listed side effects) which continued for 4 weeks. My doctor stopped the Afinitor for a week and the cough went away, but she also had me see a respiratory specialist who said I it was not caused by the Afinitor, it was likely a virus. I started back on Afinitor and almost immediately began again to have breathing issues as well as the rash which really hadn’t gone away. Again my oncologist stop the Afinitor to try to identify if that was the cause, and right away the breathing issues stopped. My question to all of you is, did anyone experience this and then get put on a Cortizone like prednisone to be able to continue on Afinitor? My oncologist feels they’re not simply side effects but perhaps an allergic reaction to the Afinitor. She’s going to speak with an allergist specialist to discuss, but I thought I’d reach out to this group to know if anyone took Afinitor and prednisone and was successful. I need to get back on treatment ASAP and hoping we find a solution other than having to go to the next step which is chemo. Appreciate any thoughts comments or information you all have. Thanks very much.
Like
Helpful
HugInterested in more discussions like this? Go to the Breast Cancer Support Group.
Connect
Hi @leeann66 thanks for reaching out to the community. I am hoping others will chime in here. But I thought I would share that I have taken prednisone with treatments to prevent some of the hardest side effects, my husband who has myeloma gets prescribed dexamethasone with a couple of his types of treatments for the same reason. None of us love steroids but it does seem to help us stay on track with our treatments when our body wants to say no. I am praying this goes well for you and you can stay on track, or they decide on a better treatment. After afinitor does the doctor have another targeted tool in the box for you?
-
Like -
Helpful -
Hug
1 ReactionThanks for your message @auntieoakley! I will share that info with my oncologist. No more targeted treatment options, after this we move to Chemo so hoping we can get the Afinitor treatment working! I will know on Monday, thanks again!
-
Like -
Helpful -
Hug
1 ReactionLet’s hope another comes down the pipeline soon.!
I wanted to check and see how you were doing? I have been thinking about you. Did your oncologist have any ideas about your treatment plan?
-
Like -
Helpful -
Hug
1 ReactionGood morning! I went back on Afinitor but then back off again. My oncologist determined that taking prednisone is only a short term solution and while it might work for a little while as soon as I stopped I would again react to the Afinitor. So, a few days ago I was started on an oral chemo, Xeloda. Hoping this is the right one for fewer side effects and longer term effectiveness! Thanks for checking in! 🙂
Hi everyone, I am on Afinitor and I developed a rash on my torso that goes from front all the way around in a circle and meets back at the other side of the rash. I’ve tried everything to keep the itch away and help heal my rash, but nothing seems to work. Anybody have any advice for me?
Thank you, Maria
Xeloda is my next step and I was wondering how you are doing on it and if it’s better than the Afinitor as far as side effects go. I have a killer rash and nothing soothes it at all so my oncologist will probably take me off the Afinitor and put me on the other meds, so I just was curious how you were doing. Take care. Hope you’re doing well.
@mglinkhart, I'm tagging a few members like @leeann66 @ja5747 @adanab @jbp, who have experience with everolimus (Afinitor) and may be able to share.
There are also members talking about everolimus (Afinitor) in the neuroendocrine tumors support group here:
- Everolimus side effects
https://connect.mayoclinic.org/discussion/everolimus-side-effects/
Maria, have you found any relief for the rash in the meantime?
Hi Colleen, thank you for doing this. No relief so far. Aveeno works for a while but only about a hour or so.
Maria