Meet others living with Head & Neck Cancer: Introduce yourself

Thank you. It's good to be able to express my fear. I will see the surgeon on July 9th to schedule surgery. That's all I know for now. I do know I have a very good surgeon so that makes me feel better.

A good surgeon, a date in the near future ... This is great news. I wish you well.

Hi all,
I'd like to invite you to join us today, Friday, August 2 at 9 a.m. CT for a video Q&A with Dr. Eric Moore, head and neck surgeon, and Dr. Daniel Ma, radiation oncology, about the rising tide of HPV associated head and neck cancers. See more information and signup here:
https://connect.mayoclinic.org/webinar/video-qa-about-hpv-associated-head-and-neck-cancer/
Dr. Moore and Dr. Ma will answer questions during the broadcast.
Post your question before and during the broadcast. You can participate in the Video Q&A on Connect by returning to https://connect.mayoclinic.org/webinar/video-qa-about-hpv-associated-head-and-neck-cancer/
The video will be shown at the top of the page.

Recurrent oropharynx cancer

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

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.

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.

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

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

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.