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I had P16+ SCC on my left tonsil 12 years ago. Underwent radiation (35 hits) and Cisplatin (7 over 7 weeks). Had been cancer free until this summer/autumn. Because of cramping in my neck, I received Botox injections every 3 months or so. During an injection session in early October I mentioned that I have had a sore throat for months. The PA doing the injection performed an endoscopy which revealed a nasty looking mass in my throat further down than the original cancer site. I am still in evaluation but am pretty sure that radiation is not in my future given the previous treatment. Options are likely some combination of surgery, chemo, or immunotherapy. I think I have a good sense of what chemo will be like but I am very interested in others' experience with immunotherapy. What activity level can one expect to maintain, what side effects were experienced? etc.

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Replies to "I had P16+ SCC on my left tonsil 12 years ago. Underwent radiation (35 hits) and..."

@jchurchill5017 Welcome to the head and neck cancer group. You have been down this road before. There have been many advances made in the last twelve years, so I am hopeful you can seek an alternate route to getting rid of the new cancer site. Sometimes we have to seek help from a cancer center or a university hospital system as our local health care team might feel safer sticking to the old tried and true what works for them. Certainly Proton radiation is a big improvement over the standard Photon. Oral and injectable drugs in the past few years are also showing great promise. At the very least, surgery is likely in your near future and that in itself is no fun either. Good luck in your search for a treatment you can live with. Many people here have had alternate experiences which have worked out well for them in most cases. so feel free to ask, perhaps by starting your own discussion, which will likely get many more eyes on your specific case. Again welcome and good healing. Thanks for joining in on the conversation here.

@jchurchill5017 I have had metastatic SCC but skin origin for 13 years. In 2020 I had mets show up in my kidney and surrounding lymph nodes. Libtayo (Cemiplimab) infusions were started and continued for over 2 years. All mets disappeared and are still gone and I have been off the drug for 2.5 years. I know skin origin differs some from mucous membrane origin SCC in its response to treatments. The main side effect I had was tiredness but it wasn't debilitating. The most irritating one was that food started to taste different so my appetite decreased. Weight loss is not helpful when battling cancer. My husband was on Keytruda for several months for bladder cancer and he had the same reaction with food tastes. He also became hypothyroid due to the drug. His tiredness did not prevent him from working.
I hope you are offered an immunotherapy and have good results as it has been easier than chemo in our experience.