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Anyone had Metastatic Squamous Cell Carcinoma?

Head & Neck Cancer | Last Active: Nov 10, 2023 | Replies (53)

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Radiation and chemotherapy. Mine started out as HPV 16 positive tumor lower tongue and right tonsil area. Could not get reduced radiation so I have been trying to get into a clinical trial or better yet you immuno therapy. However now I have a mass that has turned to t4 n3, this was after almost a year and a half of slow progression. I was trying to get into the Keytruda trial that was being offered , but my insurance is not accepted for the testing so I cannot even try to get in. I might just as well have taken the excessive radiation and chemo and dealt with the toxicity if this were to be the case. Obviously, I didn't understand how the system worked. Or should I say how it doesn't. I don't mean to sound bitter, but I am angry that I was not given either opportunity or any choices. It was, after all, my life.

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Replies to "Radiation and chemotherapy. Mine started out as HPV 16 positive tumor lower tongue and right tonsil..."

Of the two patients at the immune therapy clinic that I attend, both with tonsillar SCC, The one who did the aggressive radiation with chemo has done better than the one who tried to avoid, tried low dose radiation, etc. My SCC was ear origin, not oral, but radical surgery plus radiation with targeted therapy has controlled the initial site. Unfortunately I have had metastases, but this is being managed well at Mayo Clinic Rochester MN. Medicare is paying for my current treatment on Libtayo, a drug that works similar to Keytruda. I will also mention a complementary immune therapy I have done in the Bahamas for 10 years, Quantumimmunotherapy.net is the website. Insurance will not usually pay for that either unfortunately. It sounds like you need a doctor who fights on your behalf with the insurance company. A second opinion might be valuable at this point and it is usually covered by insurance. Try a big cancer center. Good luck with this fight. Don't give up.