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

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

Thank you! What type of cancer do you have?

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

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.

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

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.

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

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.

Hello there - I hope I'm in the right place. My husband is due to start a course of Cemiplimab on June 12th, or at least have his first consultation. He had an operation in Octover 2024, as squamous cell carcinoma had moved from his ear (operated on in January 2023) to the parotid gland. The tumour was removed and he had thirty days of radiotherapy. Sadly the cancer is fighting back - he has an inch round wound under his ear, about half an inch in depth. It weeps constantly and smells foul. He has daily visits from nurses who change the dressings - we live in France and the care is good. He can't have any more surgery or radiotherapy, so the next step is the Cemiplimab. Even before it, he is not the man I know and love. He gets very tired, and is on sulphate of morphine tablets for pain relief. He has trouble eating and drinking. I feel helpless, and would so like to hear any positive stories about how you dealt with Cemiplimab, and whether it fought off the cancer. I am trying to stay positive, but underneath I am scared that this disease will kill him. Wishing you all well xx

I have been on Libtayo for a year. Had surgery near my ear in March 2024, followed by radiation but PETSCAN showed a mass near where the tumor was removed. Started Libtayo every 3 weeks with no side effects and 3 months ago my follow up PET showed the mass in a lymph node near this area as getting slightly larger. Even with that growing I was not experiencing the constant outbreaks of SCC bumps that I had been getting so somehow it was helping. I'm at Mayo in Jacksonville and my oncologist recommended an "off label" treatment of lymph node ablation. This was done in an hour by an ablation specialist. My neck was numbed and ethanol was injected directly into the lymph node with the idea being the ethanol would kill the cancer cells within. Its a process that is used for thyroid gland but since my cancer cells were confined in this area it made sense it would perform as well. During this time I had started a new diagnostic called Signatera which uses a sample of my original tumor and measures it through my DNA and can tell if there are any of these specific cancer cells around my system. My first test was measured by blood work at the beginning of this year...after 3 months a second test showed a lot of elevation...then the neck ablation and my recent blood work is reduced back to the first reading...present but a low number. The PET I just had showed NO sign of cancer in that lymph node so it worked! The procedure can be repeated if it returns. As to a year of immunotherapy, I have noticed a few changes in added fatigue, my thyroid to hypothyroid and I'm now on daily med for that. Otherwise, I'm doing good and realize the Libtayo may be a treatment for another year or until my numbers are completely gone. I hope your husband can get as good a result as I have.