Meet others living with Head & Neck Cancer: Introduce yourself

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.

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.

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

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

🙏

Amen.

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.

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.

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.

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