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

Updating my Libtayo journey...had a pet scan yesterday after 3 treatments and nothing new showing. Doing my 4th infusion today and so far no negative reactions. I have plenty of energy and too good of an appetite! I'll have another scan in 3 months and continue on Libtayo for a year per my oncologist at Mayo. So thrilled with the excellent care that I receive there. Tempted to get it closer to home because its 2 hrs each way but don't want to risk lesser treatment locally. My first scan which was a local hospital was nowhere up to the quality of this recent one yesterday which shows much more detail and I also believe the interpreters are superior.

Not knowing how extensive your surgery was, I can share that most of my face has been touched by mohs and surgeons and feeling takes a year to get back. I had a giant removal on my hairline/forehead and a month of radiation and am now beginning to feel skin after more than a year. This year had a large incision, like 8" along my ear/hairline that feels weird and a month of radiation leaving a nice bald spot over and behind my ear which I'm able to hide w/hair. Using rogaine in these areas seems to help. Just give it time.

I would love to talk to your further about Libtayo. I have squamous cell cancer on my parotid gland that metastasized from a previous Mohs surgery on my eyebrow area. I have my second Libtayo infusion next Wed. My oncologist and surgeon are hoping that after 4 treatments my tumor will have shrunk so the surgery will have a better outcome. I am worried about facial paralysis if my facial nerve has to be sacrificed.

@anonymous624, how did the second Libtayo infusion go? How are you doing?

It went fine. My next one is next week. My tumor on my parotid gland doesn’t feel like it has grown but I was hoping it would be smaller after my second infusion. My surgery is scheduled for October. I wish I could connect with more people who have my same situation…squamous cell cancer metastasized to my parotid gland, that are on Libtayo immunotherapy.
If it doesn’t shrink there is a good possibility of facial nerve paralysis. I wonder how many infusions others had before seeing success before surgery.

Hi there. I am almost 72 years old and live in Australia.

I have a history of NHL which goes back to Jan 2012.

Towards the end of 2023, I was diagnosed with an SCC in a lymph gland already impacted by NHL During February -end of March 2024, I underwent 6 rounds of chemo and 35 rounds of radiotherapy which appears to have solved the neck issue.

A subsequent PETSCAN have revealed some spots in the lungs which turned out to inflammation of a non-malignant nature following a biopsy.

Another one subsequent to the above identified some spots in the pelvic area which turn out to be similar to the neck issue.

Cemplimab was the suggested approach.

I commenced this on Aug 29 and will have treatments at three weekly intervals.

So far the side effects I am experiencing have been insomnia on the first night after treatment, a headache that comes and goes plus some additional joint soreness mainly in the rear of the right jawbone vicinity near the site of the radiation scar.

These seem to be abating.

Has anyone gone on immunotherapy and got pneumonitis from it. Because of the toxicity I now need to stop treatment

@kathyheidt, I'm sorry that your treatment was interrupted and that you got pneumonitis. How are you doing now? Will treatment start again or adjusted?

They have to cancel the treatments for now.. if at way later date cancer comes back again they can revisit on risk reward basis as I will most likely get pneumonia again

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?