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.

loli | @loli | Jan 16, 2018

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

Colleen Young, Connect Director | @colleenyoung | Jan 17, 2018

In reply to @loli "Thank you! Do you know if there is a group that deals with nerve pain?" + (show)

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/

Steve | @hoppy | Jan 21, 2018

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

Colleen Young, Connect Director | @colleenyoung | 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)

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

Steve | @hoppy | Jan 21, 2018

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.

loli | @loli | 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)

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?

Colleen Young, Connect Director | @colleenyoung | Jan 21, 2018

In reply to @hoppy "Hi Colleen thank you for the kind welcome. I had 33 RT and 2 Cisplatin I..." + (show)

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

Steve | @hoppy | Jan 21, 2018

In reply to @hoppy "Hi Colleen thank you for the kind welcome. I had 33 RT and 2 Cisplatin I..." + (show)

Thank you so much I posted in the discussion.

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)

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!

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)

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.