1. < Head & Neck Cancer
Moderator

Meet others living with Head & Neck Cancer: Introduce yourself

Posted by Colleen Young, Connect Director @colleenyoung, Nov 13, 2017

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?

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

Steve | @hoppy | Jan 21, 2018
In reply to @hoppy "Hi I’m Steve from Kansas City Missouri. I was diagnosed with lymph node and tongue Stage..." + (show)
@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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Adrienne, Alumna Mentor | @adriennef | Jan 21, 2018
In reply to @hoppy "Hi I’m Steve from Kansas City Missouri. I was diagnosed with lymph node and tongue Stage..." + (show)
@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

Jump to this post

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?

REPLY
Jano | @jano | Jan 22, 2018
In reply to @hoppy "Hi I’m Steve from Kansas City Missouri. I was diagnosed with lymph node and tongue Stage..." + (show)
@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

Jump to this post

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.

REPLY
Steve | @hoppy | Jan 22, 2018
In reply to @hoppy "Hi I’m Steve from Kansas City Missouri. I was diagnosed with lymph node and tongue Stage..." + (show)
@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

Jump to this post

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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Ileana | @ileanabalcu | Jan 22, 2018
In reply to @colleenyoung "@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace Welcome..." + (show)
@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.

Jump to this post

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!

REPLY
1 reply
Steve | @hoppy | Jan 22, 2018
In reply to @colleenyoung "@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace Welcome..." + (show)
@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.

Jump to this post

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.

REPLY
Jamie Olson | @jamienolson | Jan 22, 2018
In reply to @colleenyoung "@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace Welcome..." + (show)
@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.

Jump to this post

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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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 22, 2018
In reply to @colleenyoung "@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace Welcome..." + (show)
@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.

Jump to this post

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?

REPLY
Ileana | @ileanabalcu | Jan 22, 2018
In reply to @colleenyoung "@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace Welcome..." + (show)
@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.

Jump to this post

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.

REPLY
Ileana | @ileanabalcu | Jan 22, 2018
In reply to @colleenyoung "@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace Welcome..." + (show)
@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.

Jump to this post

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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