Meet others living with Head & Neck Cancer - Come 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.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentors @adriennef and @alpaca and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

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, soft tissue sarcoma or thyroid cancer.

Let’s get to know one another. Why not start by introducing yourself? What type of cancer have you been diagnosed with?

@jano

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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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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Hi 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/

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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

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@loli

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

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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.

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@loli

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

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@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.

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Thank you! Do you know if there is a group that deals with nerve pain?

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@loli

Thank you! Do you know if there is a group that deals with nerve pain?

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Yes, @loli. You will find discussion about nerve pain in the:
Brain & Nervous System group https://connect.mayoclinic.org/group/brain-and-nerve-diseases/
Chronic Pain group https://connect.mayoclinic.org/group/pain/

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Hi I’m Steve from Kansas City Missouri. I was diagnosed with lymph node and tongue Stage 4a HPV Positive last December. I was not a surgical candidate.
My chemo and radiation ended March 6th.

I am doing well and have had clean studies so far.

I will be having my one year Scan in March

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@hoppy

Hi I’m Steve from Kansas City Missouri. I was diagnosed with lymph node and tongue Stage 4a HPV Positive last December. I was not a surgical candidate.
My chemo and radiation ended March 6th.

I am doing well and have had clean studies so far.

I will be having my one year Scan in March

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Hi Steve and welcome to Connect. We look forward to getting to know you. What treatment side effects, if any, do you deal with?

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Hi Colleen thank you for the kind welcome. I had 33 RT and 2 Cisplatin I could not do the 3rd one due to my Creatinine.

The only side effects I have is dry mouth and a little chemo fog from time to time.

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@hoppy

Hi I’m Steve from Kansas City Missouri. I was diagnosed with lymph node and tongue Stage 4a HPV Positive last December. I was not a surgical candidate.
My chemo and radiation ended March 6th.

I am doing well and have had clean studies so far.

I will be having my one year Scan in March

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Hi Steve, welcome to the group. March will be my fifth anniversary, and tomorrow I have an appointment in Baltimore for my check up. I am praying all is well. I feel really well, and like you, my only complaint is dry mouth, though my thyroid was also affected and I lost four molars to receding gums. All related to radiation. I am very positive about all this little issues: Like, less teeth to brush, you know.
What do you do for dry mouth?

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@hoppy

Hi Colleen thank you for the kind welcome. I had 33 RT and 2 Cisplatin I could not do the 3rd one due to my Creatinine.

The only side effects I have is dry mouth and a little chemo fog from time to time.

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Steve, I invite you add your thoughts to this discussion:
– Saliva and dry mouth https://connect.mayoclinic.org/discussion/saliva-and-dry-mouth/

Liked by Steve

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@hoppy

Hi Colleen thank you for the kind welcome. I had 33 RT and 2 Cisplatin I could not do the 3rd one due to my Creatinine.

The only side effects I have is dry mouth and a little chemo fog from time to time.

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Thank you so much I posted in the discussion.

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@hoppy

Hi I’m Steve from Kansas City Missouri. I was diagnosed with lymph node and tongue Stage 4a HPV Positive last December. I was not a surgical candidate.
My chemo and radiation ended March 6th.

I am doing well and have had clean studies so far.

I will be having my one year Scan in March

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Hi Steve! We are so happy to have you here. It sounds like you’ve been through a lot, and I am so glad to hear you are doing well! What a gift to celebrate your one year anniversary soon. Congratulations!

I also had cancer in my tongue and lymph nodes. I’m curious as to why you were not a candidate for surgery (if you are comfortable sharing!). Did the chemo and radiation completely eliminate any visible tumor?

Thanks for joining us here on Connect. Your story is such an encouragement!

Liked by Steve

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@hoppy

Hi I’m Steve from Kansas City Missouri. I was diagnosed with lymph node and tongue Stage 4a HPV Positive last December. I was not a surgical candidate.
My chemo and radiation ended March 6th.

I am doing well and have had clean studies so far.

I will be having my one year Scan in March

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Hi Adrienne,,
Thank you for the warm welcome. I saw two ENT’s that confirmed that with the location of the tumor on my tongue that would have to remove my tongue,Vocal Cords and I would lose my inability to swallow.

As of now 10 and one half months I am cancer free.

I’m anxious for my one year Scan.

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