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?

@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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Thank you so much for the kind welcome.

I’ve found water and spray biotine are my best friend for dry mouth.

Yes I give thanks for the email gifts I have received from my cancer such as the extended family I have obtained.

I look forward to getting to know you all.

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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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That is such fantastic news. I am so happy that the chemo and radiation were so effective!

What type of scan do you have planned at one year?

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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Jan from Jacksonville…….Hi Steve, welcome to the club. Ugh! My 18 mos petscan is tomorrow Jan 23. Wishing you the best. I had radiation and chemo for a tumor on pallette of mouth. No surgery too. Im lucky, but went thru hell as you did. Hang in and stay well.our new normal. Happy New Year.

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 there Jan thank you so much. Yes this is our new normal and fortunate to still be able to be with our loved ones. Happy New Yearsto you and your loved ones as well.

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@colleenyoung

@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace

Welcome to the new Head and Neck Cancer group on Mayo Clinic Connect. This group dedicated to conversations and connections about all types of head and neck cancers will make it easier for members to find a relevant discussion to ask their questions and share information.

If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign. Also, don’t forget to +Follow the group. Learn more about how to follow, @mention and use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

This is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of cancer or supporting someone with cancer.

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Hi, I’m Ileana and my husband was diagnosed with HPV tonsil and tongue cancer. He had surgery and should start radiation and chemo on the 29th. We’re enrolled in a trial that requires only 3 weeks of radiation and 2 chemo sessions before checking if it’s resolved. We’re crossing our fingers that this will be enough and we can continue life with minimal disruption.
Hugs and health to all!

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@colleenyoung

@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace

Welcome to the new Head and Neck Cancer group on Mayo Clinic Connect. This group dedicated to conversations and connections about all types of head and neck cancers will make it easier for members to find a relevant discussion to ask their questions and share information.

If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign. Also, don’t forget to +Follow the group. Learn more about how to follow, @mention and use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

This is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of cancer or supporting someone with cancer.

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Hi Lleana it is so good to hear he and you are on your way to healing. I heard good things about the trial he is taking from my Radiation Oncologist. Please keep us posted. Prayers.Positive Thoughts and Love Your Family’s Way.

Liked by Ileana

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@colleenyoung

@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace

Welcome to the new Head and Neck Cancer group on Mayo Clinic Connect. This group dedicated to conversations and connections about all types of head and neck cancers will make it easier for members to find a relevant discussion to ask their questions and share information.

If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign. Also, don’t forget to +Follow the group. Learn more about how to follow, @mention and use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

This is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of cancer or supporting someone with cancer.

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Hello @ileanabalcu! Welcome to Mayo Clinic Connect. 🙂 Great to have you here in this discussion.

If you don’t mind me asking, How old is your husband? Are you seeking care here at Mayo, Rochester? What questions do you have for other members that will help you, as a caretaker care for your husband? And- What questions does your husband have for the members that have “been there and done that”?

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@colleenyoung

@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace

Welcome to the new Head and Neck Cancer group on Mayo Clinic Connect. This group dedicated to conversations and connections about all types of head and neck cancers will make it easier for members to find a relevant discussion to ask their questions and share information.

If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign. Also, don’t forget to +Follow the group. Learn more about how to follow, @mention and use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

This is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of cancer or supporting someone with cancer.

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Welcome @ileanabalcu. We have a couple of caregivers in the Head & Neck Cancer group. Please meet @lisa_sj99 @sylviapf and @gaybinator.
Is radiation daily? Are you working or taking time off work during your husband’s treatment phase?

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@colleenyoung

@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace

Welcome to the new Head and Neck Cancer group on Mayo Clinic Connect. This group dedicated to conversations and connections about all types of head and neck cancers will make it easier for members to find a relevant discussion to ask their questions and share information.

If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign. Also, don’t forget to +Follow the group. Learn more about how to follow, @mention and use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

This is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of cancer or supporting someone with cancer.

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My husband is 63. He is treated in NJ at Memorial Sloan-Kettering – I hope it’s Ok to mention “competition”, if not feel free to edit.
I will post questions in another thread when i have them. Thanks for starting this group.
What i’d really like is for those of us in the trial to have our own group to share impressions.

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@colleenyoung

@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace

Welcome to the new Head and Neck Cancer group on Mayo Clinic Connect. This group dedicated to conversations and connections about all types of head and neck cancers will make it easier for members to find a relevant discussion to ask their questions and share information.

If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign. Also, don’t forget to +Follow the group. Learn more about how to follow, @mention and use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

This is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of cancer or supporting someone with cancer.

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Yes, radiation is Monday through Friday. I am lucky enough to be working for my husband so I will take half days off. On the other hand, we have a small company and having two people unable to work full time for a while is putting a strain on the company. It could be worse though. I have no idea how others are doing it!

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Hi Everyone,
My name is Bobbielynn from Sunny California. A wonderful 59 year old I ‘ve had Head and neck cancer since 2008. Thought it was a canker sore on my tongue but turned out to be cancer. Recurrence on the day of my five year anniversay I had surgery, radiotherapy, and chemotherapy both times. i have a flap sewn to the bottom of my mouth and a huge scar from the graft on my right arm. I say its a cancer awareness tattoo. I had to learn to speak and eat again however the side effects are the ones hitting me now. My speech and eating was affected but i have adjusted and actually doing well. I had to rethink how I was going to see this as a problem or an adventure (mindfulness) Its been an adventure learning to puree foods to chew hits and misses there. I found out I will be losing my teeth from the radiontherapy bummed sounds swallow but it bothers me.
Hoping healing no pain would be nice, and thinking okay going to have to practice a different smile hmm maybe an Olsen twin smirk. LOL

Anyone have any helpful tips for puree foods or experice tooth loss after treatments?

Liked by loli

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Hello, Bobbielynn. My case is similar to yours with a recurrence after 4 years and dental problems. I have a few teeth left, enough to hang a partial metal denture on. I smile for the camera every time because I don’t know how long those teeth are going to last. I have a severed facial nerve which oddly allows me to smile but gives me a very twisted resting face.
I had an ulcer on my tongue for a long time that turned out to be cancer.
Pureed foods. Hmm. I had oatmeal and yoghurt for breakfast. I eat soups with toast soaked in them. I can eat very soft food with lots of gravy.
I don’t have any pain but a very uncomfortable mouth at times. I try to keep fit.
Welcome!

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@nanab1219

Hi Everyone,
My name is Bobbielynn from Sunny California. A wonderful 59 year old I ‘ve had Head and neck cancer since 2008. Thought it was a canker sore on my tongue but turned out to be cancer. Recurrence on the day of my five year anniversay I had surgery, radiotherapy, and chemotherapy both times. i have a flap sewn to the bottom of my mouth and a huge scar from the graft on my right arm. I say its a cancer awareness tattoo. I had to learn to speak and eat again however the side effects are the ones hitting me now. My speech and eating was affected but i have adjusted and actually doing well. I had to rethink how I was going to see this as a problem or an adventure (mindfulness) Its been an adventure learning to puree foods to chew hits and misses there. I found out I will be losing my teeth from the radiontherapy bummed sounds swallow but it bothers me.
Hoping healing no pain would be nice, and thinking okay going to have to practice a different smile hmm maybe an Olsen twin smirk. LOL

Anyone have any helpful tips for puree foods or experice tooth loss after treatments?

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Hi..Jan here from Jacksonville, FL. You are a tough one. Congrats,on your great attitude. My best to you and hope each day you feel a littlle better. Chat anytime.

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To the great people in this group. Stay strong!!!!!!!

IMG_0408

Liked by Sue, Steve

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@nanab1219

Hi Everyone,
My name is Bobbielynn from Sunny California. A wonderful 59 year old I ‘ve had Head and neck cancer since 2008. Thought it was a canker sore on my tongue but turned out to be cancer. Recurrence on the day of my five year anniversay I had surgery, radiotherapy, and chemotherapy both times. i have a flap sewn to the bottom of my mouth and a huge scar from the graft on my right arm. I say its a cancer awareness tattoo. I had to learn to speak and eat again however the side effects are the ones hitting me now. My speech and eating was affected but i have adjusted and actually doing well. I had to rethink how I was going to see this as a problem or an adventure (mindfulness) Its been an adventure learning to puree foods to chew hits and misses there. I found out I will be losing my teeth from the radiontherapy bummed sounds swallow but it bothers me.
Hoping healing no pain would be nice, and thinking okay going to have to practice a different smile hmm maybe an Olsen twin smirk. LOL

Anyone have any helpful tips for puree foods or experice tooth loss after treatments?

Jump to this post

@nanab1219 Dealing with tooth loss after cancer treatments would be a great topic for a new discussion. Here’s how:

1. Go to the H&N Cancer group homepage here: https://connect.mayoclinic.org/group/head-neck-cancer/
2. Click the START A DISCUSSION button.
3. Enter a title. Something like “Coping with tooth loss after cancer treatments”
4. Write your message.
5. Click CREATE DISCUSSION

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