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Libtayo (cemiplimab) treatment for SCC...any comments?

Head & Neck Cancer | Last Active: Sep 29 2:22pm | Replies (23)
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@louisejewell

Had my first Libtayo infusion 3 weeks ago and it went very well. No side effects other than fatigue the first 2 days but probably from anxiety about the whole thing. My energy level has been great since then. I've made big adjustments to my life in order to do all I can including giving up my nightly wine and switching to decaf espresso. Don't miss either. Eating healthier and keeping active. Wearing sun hats with face coverings when I'm out and fully covered by pants and long sleeve shirts. Its hot and I sweat but feel its better than loads of sunscreen which I'd probably not do every 2 hrs as advised. After my second infusion next week there will be a follow up pet scan to see any results. I'm scheduled every 3 weeks thru August so far.

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Replies to "Had my first Libtayo infusion 3 weeks ago and it went very well. No side effects..."
kathyheidt | @kathyheidt | Jun 30 8:56am

Thank you and so excited to hear your reply! That sounds great and I hope I have the same outcome. I am still just trying to accept my loss of facial feeling from my maxillectomy but glad it is over. So happy for you and enjoy your summer!

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Sue, Volunteer Mentor | @sepdvm | Jul 2 8:25pm

Hello @ louisejewell. I was on Libtayo for 2 years and 4 months for metastatic SCC starting in my ear. I have been off for over a year and still no sign of cancer. My last met was in kidney and lymph nodes and all disappeared.
The tired feeling seemed to increase over time for me. The other annoying side effect was a decrease in appetite because food started to taste differently. Even off the drug for this time I still find foods that just don’t taste the same to me. It has been hard to maintain my weight. Those are pretty minor issues to deal with considering my cancer has been eliminated by this drug. I will gladly go back onto it if/when my cancer returns.
I hope your experience is positive with Libtayo. If you have any questions please let me know.

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