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Meet others living with Head & Neck Cancer: Introduce yourself
Head & Neck Cancer | Last Active: 2 days ago | Replies (523)Comment receiving replies
Hi. Jano here from Jacksonville, FL. Almost 2 yrs in remission. Had tumor on the back soft palette of my mouth. 35 radiation sessions and chemo. Keeping my fingers crossed. Feeding tube for 5 mos. Experiencing dry mouth, feet meuropathy and lost some taste buds. Hoping it all continues to improve. Thanks for this group!
Replies to "Hi. Jano here from Jacksonville, FL. Almost 2 yrs in remission. Had tumor on the back..."
Thanks so much.. I had cisplatin also. It is aggressive. Very annoying neuropathy. Comes and goes almost daily. Tried everything. You just get used to the annoyance. I wish you continued good health. Way to go. Petscan next week. Every 6 mos. for now. Here comes the anxiety. Happy New Year!
FYI: There is a Neuropathy group on Connect too in case you're interested. Members talk about all kinds of neuropathy, not only cancer-induced neuropathy https://connect.mayoclinic.org/group/neuropathy/
Hi @jano - I add my welcome!
Scanxiety.......we know it well. I have five plus years since original surgery, 2 years since the last lung metastasis. Good luck to you, Jano.
My original H&N squamous cell was in the external ear canal.....near the eardrum. A subtotal temporal bone resection removed most of the middle ear and closed the ear canal. Facial nerve was affected so that was transected and anastomosed during the parotidectomy and select neck dissection. 37 radiation treatments and concurrent cetuximab targeted chemotherapy. So far no recurrence at original site. Taste buds were affected but it is much better now compared to the first year, and dry mouth is an issue but not as bad as many of you. Being well hydrated makes a world of difference in my dry mouth so I drink a lot of water and have minimal caffeine.
Congrats on five years plus. Thank you for your response. My taste buds, neuropathy, runny nose, dry mouth has shown some improvement in the past year but I get anxious sometimes thinking of how it used to be as I know you do too. I'm so fortunate not to have had surgery and that the chemo and radiation did it. I wish you many more years of good health. It's amazing to read the stories on this site. Im blessed. Take good care.
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Well done on the two years remission, @jano. Sounds as if you are doing well with most taste buds operational? I have feet neuropathy too from the Cisplatin I had 20 years ago for a different cancer. It has become less annoying over the years but if I get truly exhausted my feet ache and burn still. A bellwether symptom:)