1. < Melanoma & Skin Cancer
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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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kathyheidt | @kathyheidt | Sep 29, 2024
In reply to @anonymous624 "Unfortunately, after three treatments of Libtayo, my tumor on my parotid gland grew. My oncologist wants..." + (show)
@anonymous624

Unfortunately, after three treatments of Libtayo, my tumor on my parotid gland grew. My oncologist wants me to start on Cetuximab (Erbitux) and radiation. I was scheduled for surgery on October 3rd but after reviewing my recent scans the Tumor Board recommended no surgery due to perineural spread along the facial nerve branches. I am very disappointed and considering second opinions from other surgeons. Anyone have this situation?

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My understanding is that cet works I was on cet, cem and chemo prior to surgery the cet they feel helped though I had a lot of skin side effects but worth it if it stops the spread
I am at Sloane so I did not get second opinion but more information imo always helpful

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anonymous624 | @anonymous624 | Sep 29, 2024
In reply to @kathyheidt "My understanding is that cet works I was on cet, cem and chemo prior to surgery..." + (show)
@kathyheidt

My understanding is that cet works I was on cet, cem and chemo prior to surgery the cet they feel helped though I had a lot of skin side effects but worth it if it stops the spread
I am at Sloane so I did not get second opinion but more information imo always helpful

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Thank you! What type of cancer do you have?

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kathyheidt | @kathyheidt | Sep 29, 2024

I have squamous cell carcinoma in my maxillary left sinus which spread to my hard palate stage 3/4 I had a maxillectomy but had neoadjuvant therapy before surgery in May then immunotherapy after but had to stop treatments bc it caused pneumonia and inflamed bad neck arthritis

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louisejewell | @louisejewell | Nov 20, 2024

Checking in after my 8th Libtayo infusion. Wondering when I'll see some good results. I'm still showing some area of concern on my lymph node by my ear where my surgery was. Just had 2 biopsies along my cheek and my ctDNA first test result came in as positive, meaning I have cancer in cells somewhere. My PET scan last week showed no activity other than my head/neck area but I understand that the Signatera test shows cancer way before PET scans. Has anyone had anything similar to this? Would love to hear others Libtayo results.

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drpeter | @drpeter | Mar 28 9:45am
In reply to @sepdvm "Hello @ louisejewell. I was on Libtayo for 2 years and 4 months for metastatic SCC..." + (show)
@sepdvm

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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May I ask how are things now almost one year later? Are your scans still clear?

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Mentor
Sue, Volunteer Mentor | @sepdvm | Mar 28 11:14am
In reply to @drpeter "May I ask how are things now almost one year later? Are your scans still clear?" + (show)
@drpeter

May I ask how are things now almost one year later? Are your scans still clear?

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Yes, every 6 month scans are still clear with the last one in February 2025. My Mayo oncologist says I am a miracle. I hope to continue miracle status for a long, long time.

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drpeter | @drpeter | Mar 28 11:51am

That is such amazing and inspiring news CONGRATULATIONS, and may the miracle happen for a VERY VERY LONG TIME!

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drpeter | @drpeter | Mar 28 1:43pm

I was wondering. Did your oncologist give you any definitive reason why you should stop or continue your treatment after 24 months? The reason that I ask is that in Japan, surgeons assume the role of oncologists. There are actually very few oncologists in Japan (strange I know). So they lack the deep expertise of a specialist.

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