Immunotherapy

Hi ZOSO5cc125 and a very warm welcome to the group which I hope you'll find is both an informative and supportive place to be.

I’m Anne, one of the Community Champions here on the Online Community and, although I haven't had the same type of skin cancer as you, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

I've searched the group to see if anyone else here is having immunotherapy for SCC and found EmmyGremlin has posted in the last couple of weeks and Follyfoot a year ago. I've tagged them into this reply and hopefully they'll pop on and share their experiences with you.

While you're waiting for replies, it would be great if you could put something about your diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi sorry to hear this. We have experienced the same, almost 3 years ago my husband was told to go home and sort his affairs out he had stage 4 SCS that had spread to his lymph nodes and lungs.  He had 5 tumours and was told he could not have chemotherapy. 

he was put on immunotherapy for 2 years he had no side affects and so far in good health.  He has a scan every 3 months and so far nothing is growing so we remain hopeful and thankful for the 3 years we have had so far.

try not to worry and you can contact us any time.  

My husband was on Ceiplimab, he received treatment at Mount Vernon 

Hi! Hope you're OK. I have Squamous cell carcinoma metastisized to my lymph nodes and pelvis, following a leg ampuation. I started immunotherapy 5 weeks ago so have had only 2 rounds so far (every 3 weeks) 

Immunotherapy and effectiveness are supposed to start around 4-6 weeks so right in it I think. Side effect for me have been achy and extream tiredness. Like falling asleep during any tv programm lol a d sleeping 10 hours at night, when I have always been 6. All the pain I'm getting is from my actual tumor as immunotherapy has made Mt lymph node overreact and my residual limb is so swollen o cannot wear my Prosthetic. But other than that it's been OK. A bit of nausea too but they said that's probs stress rather than the immunotherapfeel free to contact me or reply. It's good to talk about it all. Hooe your treatment goes well! EmmyGremmy x

Thank you for getting in touch. Sorry to hear what you have been through so far glad the immunotherapy is helping. hearing your story has helped especially that the treatment has helped 

Thank you for getting in touch the symptoms don’t sound as extreme as chemotherapy I’m still waiting for my first appointment 

Do you know which treatment you will be given, it’s amazing the treatment available these days.  Sone people have side affects but the treatment still works, so don’t get disheartened either way

Yes it will be Cemiplimab infusion I’ve read the macmillan support leaflet on it every 3 weeks for upto 2 years 

Yes same as my husband, he was worried after 1st treatment so went back to the hospital and they scanned him, it was amazing that the tumours had already started to shrink!   People told him that it was a sign of it working having side affects but he didn’t have any so you can’t go by that.  

the treatment is only given for two years regardless of whether you miss one because you were on holiday or something.  My husband missed two treatments but they wouldn’t let him have them at the end of the two years.  So try not to miss them if you can help it.

Thanks for the advice I’ll try not to miss any. I let you know when I start my treatment, and how it’s going.