Community Member
a month agoI had 1/3 of my tongue removed,lymph nodes on right side of neck, and cancer removed from under my tongue (stage 4b tongue cancer) in September. I completed radiation and chemo (done at the same time) in December. Recovery from radiation has been difficult and I still struggle daily. The operative side of my tongue has healed. I don't have any mouth sores, but my tongue is very painful. Just talking hurts. Water or anything in my mouth makes my tongue hurt. I rate the pain 6 out of 10. I'm wondering about nerve damage causing the pain. Has anybody experienced this? Doctors don't have any answers. I live with a feeding tube and would like to eat normally so the tube can be taken out.
Community Member
a month agoNerve pain after tongue cancer surgery and radiation can last for months and sometimes longer, varying greatly from person to person based on individual healing and the extent of treatment. Many cancer survivors in this community have shared similar experiences with persistent pain that affects speaking and eating, even after the surgical site appears healed. The combination of surgery, radiation, and chemotherapy can all contribute to nerve-related discomfort that takes time to improve. Working closely with the medical team about pain management options and connecting with others who've walked this path can provide both practical strategies and emotional support during this challenging recovery period.
Community Member
19 days agoI was given Nystatin swish 4 times a day.
Community Member
19 days agoWell I chose to not have any surgery but radiation destroyed my tongue and was told the changes could keep coming for up to a year. WRONG a year and 5 months and still changing cancer is back after 4 months of we don’t know speaking is like a stroke victim. Tongue into smooth no taste buds or feeling on one side and has shrunk in length so can nearly touch way is left of my teeth hav little taste but not such a big issue as controlling swallowing is next to impossible. So feeding tube is about it, I do try to treat myself to a small coffee once a week when I go for treatment of immunotherapy and 2 different chemo drugs. Not to forget my lower jaw marrow is dying and the infection now over 8 months is still draining from outside lower jaw this after having almost all teeth pulled so this would not happen. And the treatment has damaged my thyroid and still trying to get the right dosage as currently I have a hard time getting any exercise. But as that say don’t loose hope. This is my story and there are many that are better and also worse. Every story is different.
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