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

Hi Sue, I'm tagging @gaybinator is the hopes that she will return to share her husband's experience with Libtayo (cemiplimab).

@sepdvm, when will you start treatment?

I had my first infusion at Mayo on 1/8. Hopefully will get things set up to follow up with treatment at home in Ohio this week. No real side effects at this time but a fuzzy head like chemo can cause. Might be secondary to my exhaustion and stress though. My husband had a TURP the day before for a spot in his bladder. He has urothelial cell carcinoma and has had a partial bladder resection. Lots of reason to stress around our house.

Hi, my mom just started with Libtayo. What was you experience with it? There is not much info I have found online, so any input would be appreciated. Thank you.

I have just had probably my last infusion after 27 months on Libtayo. The first year and a half it was every 3 weeks then we switched to every 6 weeks. My metastatic Squamous Cell Carcinoma that had appeared in 1 kidney and associated lymph nodes started decreasing immediately and was gone after 12 months of treatment. Because of the complete response and the fact that there is not much available information on what to do after 2 years on this medication, my oncologist at Mayo has encouraged me to stop and rescan in a few months. The side effects have been very easy to live with. Sometimes I would have a bit of dizziness the day after infusion, and the tiredness/exhaustion is very real. I found that taking it very easy for 2 days right after the infusion would make the overall tired feeling better. Just listen to your body and rest. The hardest part has been a subtle change in the taste of food and my decreased appetite. A dry mouth problem complicates that for me also. I haven't been able to gain needed weight during this time, but have not lost any either. I would gladly continue treatment if needed because of a recurrence. Good luck to your mother and I hope she has an excellent response to treatment. I am glad to answer any other questions.

Thank you so much for responding. I'm glad to hear that you treatment with Libtayo was well tolerated. My mom felt awful the first night and day after infusion. She has been on Tecentriq for a year following her 4 rounds of chemotherapy. She had two nodules removed in her right lung in 2021. The surgery just spread it. Before we knew it, she went from stage 1 to stage 4. Both lungs, and liver lighting up on the PET scan. That surgery is always going to be our biggest regret. I really hope your next scans come out NED.

I'm scheduled to start Libtayo Monday for recurring SCC's in my head and neck area. So far no lymph invasion. I am very anxious/nervous about whether I can tolerate it and if it will work. I'm a very active 75 year old woman and want many more years to enjoy life. I would love to hear more Libtayo stories from users, ie. side effects and results. The counseling today warned of so many bad things they scared me a lot! I am in the best place at Mayo in Jax but its a 2 hr. drive each way so hope it goes smooth. Just finishing up 4 wks of radiation and did 4 weeks last fall in another area. The radiation is the easy part.

Hi , I just finished 3 months of chemo and libtayo for neoadjuvant therapy then had a sinus maxillectomy at Sloane Kettering. They now want me to go on libtayo for 6 months prophylactically even though the cancer is clear. My biggest reaction specifically from cem was skin rashes and itching which can be really bad at times. Not sure also if cem has cumulative side effects?

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.

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!

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.