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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.

woodturner | @woodturner | Apr 29, 2023

Hello. My husband is just finishing 33 radiation treatments to his neck for squamous cell carcinoma. The lip cancer he had a year ago spread to his lymph nodes in his neck. He developed 2 large tumours (lymph nodes) on his neck which were removed through modified radical neck dissection surgery in February 2023. His entire neck including down to his collar bones and half of his cheeks has become very red and sore. I wanted to share what has worked for reducing the redness and also the dry mouth symptom. I apply a very liberal amount of cetephil moisturizing cream 4 times a day. I apply a soaked saline pack 2 times a day. He rinses with a water pik after any food he eats along with brushing his teeth with Biotene toothpaste, fluoride enhanced. He rinses his mouth regularly with a solution of baking powder and water. He drinks organic green and ginger tea and nettle tea throughout the day which reduces the phlegm in his throat. Overall he has managed very well through his treatments, fatigue being the biggest issue. He is looking forward finishing the radiation on May 3 and to recovering over the several weeks.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 29, 2023
In reply to @traceydoc "Hi Colleen on my good days(which are many) I do exactly what you. Suggested. On my..." + (show)
@traceydoc

Hi Colleen on my good days(which are many) I do exactly what you. Suggested. On my dark days I cannot help but fret over how my granddaughter will navigate her teenage years without me as she lives with me. (She has just turned 13) until you have been told this type of news no one can imagine what it is like especially in the wee dark nights when your thought go into overdrive.

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Tracey, oh I can imagine that you want to be there to help your granddaughter navigate the rocky road of the teenage years.

You may appreciate these related discussions:
- Family dynamics challenging when a parent has cancer: Want to connect https://connect.mayoclinic.org/discussion/group-focused-on-families-and-parent-with-cancer/
- Ashamed: I think about (and plan for) dying. Do you? https://connect.mayoclinic.org/discussion/ashamed/
- Talking Frankly about Living with Advanced Cancer https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/

Live your good days. When those dark clouds appear, you know you have a supportive community of people who understand. You can talk about the tough stuff here.

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anonymous24 | @traceydoc | Apr 30, 2023
In reply to @colleenyoung "Hi @traceydoc, that is rough news to receive. I remember when my dad was given 6..." + (show)
@colleenyoung

Hi @traceydoc, that is rough news to receive. I remember when my dad was given 6 months. He was with us for 13 months (13 was always his luck number). Your team can only give an estimate based on the predicted progression of disease and your current health status, but it is not an exact number.

What you do know is that time is limited. With that precious time, how might you focus on "what" "who" and "how" rather than "when"?

- How do you want the next months, weeks and days to unfold?
- Who do you want to spend time with?
- What is most important to you?

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I cannot help but think if the lymph nodes in my neck were removed it would not have spread to my lungs. A lot of people are surprised that it was not removed.

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Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Apr 30, 2023
In reply to @woodturner "Hello. My husband is just finishing 33 radiation treatments to his neck for squamous cell carcinoma...." + (show)
@woodturner

Hello. My husband is just finishing 33 radiation treatments to his neck for squamous cell carcinoma. The lip cancer he had a year ago spread to his lymph nodes in his neck. He developed 2 large tumours (lymph nodes) on his neck which were removed through modified radical neck dissection surgery in February 2023. His entire neck including down to his collar bones and half of his cheeks has become very red and sore. I wanted to share what has worked for reducing the redness and also the dry mouth symptom. I apply a very liberal amount of cetephil moisturizing cream 4 times a day. I apply a soaked saline pack 2 times a day. He rinses with a water pik after any food he eats along with brushing his teeth with Biotene toothpaste, fluoride enhanced. He rinses his mouth regularly with a solution of baking powder and water. He drinks organic green and ginger tea and nettle tea throughout the day which reduces the phlegm in his throat. Overall he has managed very well through his treatments, fatigue being the biggest issue. He is looking forward finishing the radiation on May 3 and to recovering over the several weeks.

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It sounds like you are an excellent caregiver doing what you can. This is a battle handled much easier with the help of someone especially someone who loves you.
Just an FYI, after his radiation treatments are done, he probably will continue to go downhill for about two weeks. The recovery is slow with often two steps forward and one step back for quite some time. He may get discouraged. He may ask to be left alone. He may object to your help. Trust me, he needs you and he will appreciate all you have done.
If you have questions down the road could you please just ask? I or someone in this group will be happy to try to answer your concerns.

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woodturner | @woodturner | Apr 30, 2023

Thank you for your reply. I know the worst is still ahead. I will continue to be by his side.

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rubagaddal | @rubagaddal | May 1, 2023
In reply to @hrhwilliam "The cyst on the mandible can sometimes heal over time. As I understand it has only..." + (show)
@hrhwilliam

The cyst on the mandible can sometimes heal over time. As I understand it has only been less than a year out of radiotherapy treatment. The mandible can be injured from the radiation and in some cases die (osteoradionecrosis) however this awful side effect from treatment can also be repaired if it comes to that. An oral surgeon should be able to make a determination however time will give you an indication of either improvement or not.
As for the lung nodules, don’t lose too much sleep over this as often as not these prove to be nothing even after a lung biopsy, which is rather like a bad day at the amusement park. Can you let me know how your repeat CT turns out?
Also if your jaw issues progress, could you keep me updated as well?
Just to remind you, your post cancer recovery often takes two or more years and beyond for some effects to work themselves out.

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Thank You so much Mr. William Olsen.
I am really grateful for the help I received from members of this wonderful platform.
I wish you all the best.
I found your words and advice really heartening.
Concerning the Jaw issue, it is not progressing, although I feel some discomfort within the site, that is worsened by the food particles that went beneath my tongue.
I will keep you updated with the result of the CT scan when I repeat it.
Thank you.

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cheyenne | @cheyenne | May 2, 2023

My name is Cheyenne and I am a 72 year old male diagnosed with stage 2 tongue cancer on December 23, 2000. (My Christmas present that year. LOL). I have undergone 3 surgeries and 35 radiation sessions and wonder why nothing seems to work. Otherwise I am remarkedly healthy (for my age...how I dislike that caveat)

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smittyfromcuse | @smittyfromcuse | May 3, 2023
In reply to @cheyenne "My name is Cheyenne and I am a 72 year old male diagnosed with stage 2..." + (show)
@cheyenne

My name is Cheyenne and I am a 72 year old male diagnosed with stage 2 tongue cancer on December 23, 2000. (My Christmas present that year. LOL). I have undergone 3 surgeries and 35 radiation sessions and wonder why nothing seems to work. Otherwise I am remarkedly healthy (for my age...how I dislike that caveat)

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Hello Cheyenne. When you say nothing is working do you mean it has recurred? If the original cancer was 23 years ago did it recently come back?

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shielashepperd | @shielashepperd | May 3, 2023
In reply to @bruce2023 "Squamous cell carcinoma with metastatic bone cancer. Head and neck clear after radiation and chemo combination...." + (show)
@bruce2023

Squamous cell carcinoma with metastatic bone cancer. Head and neck clear after radiation and chemo combination. Bone lesions on hip and spine. First round of radiation and Keytruda do not appear to be working.

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I am sorry to hear about both the metastasis and the immunotherapy not working. Did your metastasis happen after the H & N treatment? How long were you cleared before finding this?
I'm hoping your metastasis is very small. Please keep us posted.

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ntodd | @ntodd | May 4, 2023
In reply to @traceydoc "I was diagnosed with tonsil cancer which had spread to my lymph node in my neck...." + (show)
@traceydoc

I was diagnosed with tonsil cancer which had spread to my lymph node in my neck. This cancer has now spread to my lungs despite six weeks of radiotherapy and chemotherapy. I have been given a terminal diagnosis now of twelve months. Has anyone lived beyond this

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I am not fully conversant with your condition, but feel there is always hope. Have you spoken to your doctor about removal of the lung? People can survive with only one Lung. If the Tonsil cancer has not reoccurred, then it is just possible that removal my be an option.

As for your dark thoughts, well we all have them, it would seem that they can't be removed just like a cancer can. I was told a few days ago that my cancer has probably returned via the lymph nodes. Mine could not be removed but showed great signs after my rounds of radiation and chemo. Your concerns with your granddaughter's future are real but time may allow you to put things in place so you can feel a bit more comfortable. Kids can cope, it will be hard for her no doubt, but talk with her and let her know your feelings about her future, see what she has on her mind.

I hope you get some good news and are able to sort the problems so you can set your mind on the immediate problem.

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