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?

@mary76

I have been diagnosed with recurrent oropharynx cancer, with a poor prognosis. I am wondering if anyone else has experienced this and what treatment they have went with and how they are doing at this point

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Hello @mary76 I have had recurrent tongue cancer which is a bit different and was treatable with more surgery and some radiotherapy. A fellow New Zealand patient has had good results from stereotactic radiotherapy to the lesions on her lungs and Keytruda, the immunotherapy drug. I have heard that 20% of patients with metastatic head and neck or oropharangeal cancer respond well to these immunotherapy drugs. I'm not an expert and don't know your situation it seems there are options out there.
I'm really sorry to hear this has happened to you. It is gut-wrenching, I know. You are doing the right thing by reaching out and asking questions. I found I needed counselling when the cancer came back. It helped a lot.

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@alpaca

Hello @mary76 I have had recurrent tongue cancer which is a bit different and was treatable with more surgery and some radiotherapy. A fellow New Zealand patient has had good results from stereotactic radiotherapy to the lesions on her lungs and Keytruda, the immunotherapy drug. I have heard that 20% of patients with metastatic head and neck or oropharangeal cancer respond well to these immunotherapy drugs. I'm not an expert and don't know your situation it seems there are options out there.
I'm really sorry to hear this has happened to you. It is gut-wrenching, I know. You are doing the right thing by reaching out and asking questions. I found I needed counselling when the cancer came back. It helped a lot.

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Hi Alpaca,
This is Loli; I know I have not communicated in a long time. I do not remember if I shared in here, that my sister, who had tongue cancer 18 years ago, came back with jaw cancer and six months later, it had jumped to her cheekbone and the tumor was inoperable. For this reason, she had chemo and radiation. She finished her treatment 16 months ago at the Mayo clinic in Scottsdale. She checks at Mayo every three months. The problem is, that her tongue has not healed completely. She still has a burning feeling that prevents her from eating. She has tried hemp and cbd oils and all types of pain medications with no avail. If she wants to eat, she has to use solicaine (I know I am misspelling it) directly on her tongue, but the discomfort is continuos.
If you or anybody in the chat has had this problem and has found confort, please share it . She is desperate.
Greetings, and I pray everyone is doing well.

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@loli

Hi Alpaca,
This is Loli; I know I have not communicated in a long time. I do not remember if I shared in here, that my sister, who had tongue cancer 18 years ago, came back with jaw cancer and six months later, it had jumped to her cheekbone and the tumor was inoperable. For this reason, she had chemo and radiation. She finished her treatment 16 months ago at the Mayo clinic in Scottsdale. She checks at Mayo every three months. The problem is, that her tongue has not healed completely. She still has a burning feeling that prevents her from eating. She has tried hemp and cbd oils and all types of pain medications with no avail. If she wants to eat, she has to use solicaine (I know I am misspelling it) directly on her tongue, but the discomfort is continuos.
If you or anybody in the chat has had this problem and has found confort, please share it . She is desperate.
Greetings, and I pray everyone is doing well.

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Hi @loli I was wondering how your sister is doing? Such a tough row to hoe for her.

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Thank you for your interest! She is doing well health wise; but the discomfort in her mouth is continuos. But she is alive and that's what matters.
Cancer is running rampant all around us. I lost my brother in law in May to colon cancer. My dearest friend's 16 year old granddaughter has been diagnosed with an inoperable brain tumor. And last week I learnt that a sister in law, 65 and the most health oriented woman I know, has terminal cancer that has spread to her lung and lymphatic system, with a tumor in her groin. It is overwhelming!
On the other hand, my mother is 101 and goes out to the mall to walk everyday and my mother in law is 99 and her hearing is perfect so you can carry a perfect conversation with her. So, I count my blessings and try to keep positive and enjoy everyday while I try to help others.
Yours was a simple question, and I emptied my heart in answering. Thank you, it was cathartic.
Loli

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@mary76

I have been diagnosed with recurrent oropharynx cancer, with a poor prognosis. I am wondering if anyone else has experienced this and what treatment they have went with and how they are doing at this point

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I’d love to get an update from new and regular members. How are you doing?

@mary76, what treatment options are being offered to you for recurrent oropharynx cancer? How are you doing emotionally?
@alpaca how are things down under in New Zealand?
@loli How is your sister? Did you see the discussions in the Skin Health group about burning mouth syndrome? I wonder if members there may be able to offer some tips. Let me know if you want direct links to those discussions.
@karenjf did you find relief for the burning?
@mybadthryroid how was surgery? How are you doing now?

I suppose it would be silly for me to mention everyone member of the group. I just want to let you know that I’m sitting here on a Saturday morning and thinking of you. Pull up a chair and let’s chat.

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Thanks for thinking of us, Colleen. I'm still heavily involved in head and neck cancer support in New Zealand. In fact my Facebook group admins and I are in the process of forming a charitable trust to run alongside the group to help people cover some of the overwhelming little expenses involved in getting to treatments: petrol, taxis, Uber etc. Work in progress. I'm still battling with the consequences of treatment, mainly in the dental area. Dry mouth and eating difficulties are my specialities.

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My name is Kristi. I was diagnosed with adenoid cystic carcinoma in my salivary gland in 2001. So far I have been very lucky and have not had any reoccurrence. I did 16 treatments at the University of Washington of neutron beam radiation. I feel very blessed at where I am today. Every night I say a prayer for my health, happiness, and safety. If I can help with anything let me know.

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@kkelly1023

My name is Kristi. I was diagnosed with adenoid cystic carcinoma in my salivary gland in 2001. So far I have been very lucky and have not had any reoccurrence. I did 16 treatments at the University of Washington of neutron beam radiation. I feel very blessed at where I am today. Every night I say a prayer for my health, happiness, and safety. If I can help with anything let me know.

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Thank you kindly Kristi. Best wishes to you for continued health
…………..and enough strength to get through the holiday season!!

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@kkelly1023

My name is Kristi. I was diagnosed with adenoid cystic carcinoma in my salivary gland in 2001. So far I have been very lucky and have not had any reoccurrence. I did 16 treatments at the University of Washington of neutron beam radiation. I feel very blessed at where I am today. Every night I say a prayer for my health, happiness, and safety. If I can help with anything let me know.

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@kkelly1023 Kristi- yes, sometimes all you can do is pray.

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🙏

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@jshdma

@kkelly1023 Kristi- yes, sometimes all you can do is pray.

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Amen.

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@colleenyoung

I’d love to get an update from new and regular members. How are you doing?

@mary76, what treatment options are being offered to you for recurrent oropharynx cancer? How are you doing emotionally?
@alpaca how are things down under in New Zealand?
@loli How is your sister? Did you see the discussions in the Skin Health group about burning mouth syndrome? I wonder if members there may be able to offer some tips. Let me know if you want direct links to those discussions.
@karenjf did you find relief for the burning?
@mybadthryroid how was surgery? How are you doing now?

I suppose it would be silly for me to mention everyone member of the group. I just want to let you know that I’m sitting here on a Saturday morning and thinking of you. Pull up a chair and let’s chat.

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Colleen, Thank you for bringing us together again. I am happy to hear from Maureen. We share so much! My problems are with my gums receding due to radiation, so from time to time, I loose a molar. Well, one less molar to brush. Somehow, I have been producing more saliva and my mouth is not so dry. I have done nothing different, so I do not have any new recommendation. Same as Maureen, I have started a group through my church, to drive people to their appointments. It makes me happy to be able to help others. My sister just came back from Mayo in Scottsdale. She had a positive checkup and flew back to Mexico last week. My sister in law, decided to go through her third Chemo treatment. It is very difficult for the family because, even though they are aware that she is terminal, some days they are optimistic, and then, there are the bad days. Should she just let be confortable, or should she fight? Very though, and all I can do, is pray for wisdom. Thank you for listening, and Happy Thanksgiving; I am thankful for this chat.

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@kkelly1023

My name is Kristi. I was diagnosed with adenoid cystic carcinoma in my salivary gland in 2001. So far I have been very lucky and have not had any reoccurrence. I did 16 treatments at the University of Washington of neutron beam radiation. I feel very blessed at where I am today. Every night I say a prayer for my health, happiness, and safety. If I can help with anything let me know.

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Hi Kristi. I too was diagnosed with ACC. Mine was in 2007. Unfortunately I had my first recourence in 2013 and pretty much have been battling lung Mets, liver Mets and more cancer in the neck and to distant lymph nodes as well ever since. I'll be headed back to Mayo in about 3 weeks for updated scans. I am pretty sure I'll need some sort of treatment in 2020 but I always remain optimistic about the future and like you have a deep sense of spirituality. Prayer is everyday and it has certainly helped me through the rough spots and I will pray that you never have a recourence.

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@kkelly1023

My name is Kristi. I was diagnosed with adenoid cystic carcinoma in my salivary gland in 2001. So far I have been very lucky and have not had any reoccurrence. I did 16 treatments at the University of Washington of neutron beam radiation. I feel very blessed at where I am today. Every night I say a prayer for my health, happiness, and safety. If I can help with anything let me know.

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This is very impressive, @kkelly1023. I know a number of people with this rare form of HNC and yes some are doing very well after the initial round of treatment. Others are struggling and have had a multitude of treatments. I'm not a religious person but I live in hope and gratitude to be alive and reasonably functional! I would love to see better treatment pathways for ACC because it's a hard cancer to nip in the bud permanently.

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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 Colleen: Do you know people who have lost hearing due to radiation treatment for head and neck cancers?

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