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Replies to "I was 10 month out from treatment for the back of my tongue and lymph nodes...."
Head & Neck Cancer | Last Active: Jul 12 4:39pm | Replies (35)
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Replies to "I was 10 month out from treatment for the back of my tongue and lymph nodes...."
Hello @singlelady61 -- I'm sorry to hear that your cancer spread twice. Yes, we can relate. My husband was diagnosed with HPV+16 squamous cell carcinoma at the base of the tongue in November 2021. The only symptom was swollen lymph nodes on the right side of his neck. He was told "if you're going to get cancer, this is the best kind to get because it's very treatable with 90% success rate." (Seems my husband was in the 10%.) He had an 8-hour surgery in late December 2021 where they removed tissue at the base of his tongue (they removed the primary tumor), and also removed 7 lymph nodes from the right side of his neck. Once he healed from the surgery, he underwent 6 weeks of radiation therapy Feb thru March 2022. Doctors were confident they got it all and told him "this kind of cancer doesn't always respond well to chemotherapy" -- so to avoid the nasty side effects of chemo, and based on the doctor's statements, he opted not to have it. Radiation side effects were and still are nasty, mostly excessive dry mouth and difficulty swallowing, but he has adjusted as best he can. Surgical side effects included numbness on the neck and an inability to raise his right arm straight out and upward. They had to cut a vital nerve to remove the lymph nodes and that nerve controls the upward motion of the shoulder/arm. His shoulder profile is sunken and lower than his left shoulder, but at least he can still swing a golf club (treatment did not improve his slice off the tee--my attempt at humor). First and second CT scans were clear. Third CT scan in Feb. 2023 showed the cancer had spread to his lymph nodes in his chest on top of the lungs. We were devastated. Now his cancer is Stage IV because it has spread. We were told surgery and radiation is not an option at this point. His oncologist told us about a clinical trial for people with exactly his kind of cancer that had recurred/spread. It involves 2 immunotherapy drugs (Keytruda, a well-known cancer immunotherapy drug) and an experimental immunotherapy drug called Pepinemab -- not yet approved by the FDA. The clinical trial is a Phase 1b/2 study sponsored by Vaccinex, Inc. He had his first infusion treatment on April 26, 2023. He had very few side effects, but this was the first and lowest dose -- the dosage increases each time from here on out. We hope these 2 immunotherapy drugs will send his cancer into remission. The oncologist says they've seen good results in about 30% of the clinical trial patients so far. We are hoping and praying for the best, but preparing for the worst (knowing one can never really be prepared for the worst). I'll give updates here to keep everyone up-to-date. Wishing you all well.