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

Posted by Sue, Volunteer Mentor @sepdvm, Dec 16, 2020

I am looking at Cimiplimab, an immunotherapy for metastatic SCC skin cancer and wondering if any others are undergoing this treatment, side effects, success, etc.

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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?

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@colleenyoung

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?

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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.

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@sepdvm

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.

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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.

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@katierey82

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.

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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.

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@sepdvm

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.

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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.

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