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Meet others living with Head & Neck Cancer: Introduce yourself
Welcome to the Head and Neck Cancer group.
This is a welcoming, safe place where you can meet other people who are living with head and neck cancer. Let’s learn from each other and share experiences from diagnosis through treatment and coping with symptoms and recovery challenges.
As you know, head and neck cancer is the general term for a broad group of cancers that begin in the head and neck region. This include oropharyngeal cancer, hypopharyngeal cancer, laryngeal cancer, lip and oral cavity cancer, nasopharyngeal cancer, paranasal sinus and nasal cavity cancer, salivary gland cancer, squamous cell neck cancer or ameloblastoma.
Let’s get to know one another. Why not start by introducing yourself? What type of cancer have you been diagnosed with?
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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!
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4 ReactionsWell 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:)
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!
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2 ReactionsFYI: 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!
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1 ReactionScanxiety.......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.
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2 ReactionsCongrats 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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5 ReactionsHi all,
Be sure to +Follow the Head & Neck Cancer group to get notifications about new discussions. Here's how to follow:
1. Go to the Head & Neck Cancer group https://connect.mayoclinic.org/group/head-neck-cancer/
2. Click +FOLLOW below the group description.
3. Select whether to receive an email each time a new post appears or to be notified about posts in an email digest only.
4. Click Update.
Learn more about getting the most out of Connect here: https://connect.mayoclinic.org/get-started-on-connect/
Hi Colleen,
How can I invite my sister to join the group? We are one of this rare cases where two sisters have been diagnosed with mouth cancer, different kinds though. She was diagnosed with tongue cancer 18 years ago and had surgery at Mayo in Arizona. Last year she was diagnosed with jaw bone cancer and had surgery again at Mayo. Now she suffers from excruciating pain from the nerve that is located in the jaw area. I would like to invite her to join but do not know how. She might find advise for her pain in this wonderful group.
Loli
Hi @loli, if you ask your sister to search Mayo Clinic Connect she will find the website. This link will also get her to Connect with instructions on how to get started. https://connect.mayoclinic.org/get-started-on-connect/ Then advise her to join the Head and Neck Cancer group. 🙂 Please reply if you have any more questions. I will be on all weekend and more than happy to help.
@loli, it would be wonderful to have your sister join us on Connect in the Head & Neck Cancer group. I'm sorry to hear about her pain issues. I know she would get support here.
Direct your sister to the homepage of Connect https://connect.mayoclinic.org/ and to click the JOIN button in the upper right corner.
Once she has joined, then she can follow the Head & Neck Cancer group and join the discussions.
Like Jamie said, there are step-by-step instructions here: https://connect.mayoclinic.org/get-started-on-connect/
We look forward to welcoming her.