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Meet others living with Head & Neck Cancer: 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.
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?
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It sounds as if you are on a good path to recovery. The mask is daunting but after a few goes it becomes bearable. I like to think of it as a curative element to keep our heads in place for the treatment.
I know a few people who have been radiated in the nasal area. They seemed to have the same side effects as me: inflamed mouth, burnt neck skin but from what I have heard proton therapy is a lot better: more effective and safer. The treatment is really worth it to stamp out any remaining cancer cells - a good insurance policy.
I've had two cancers too but not so young - by age 60. Seem to be okay now and I hoping for the same outcome for you. @squirrelsnanna
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1 ReactionHello @squirrelsnanna,
Have you seen the "Visiting Mayo Clinic" group on Connect? https://connect.mayoclinic.org/group/traveling-to-mayo-clinic-minnesota/
I'd sincerely encourage you to go through some of the conversations taking place, join in and ask questions, or start a new discussion there. For instance, you might wish to read this discussion:
– What are your accommodation recommendations when coming to Mayo? https://connect.mayoclinic.org/discussion/what-are-your-accommodation-recommendations-when-coming-to-mayo/
Mayo Clinic Concierge service can also assist you with questions related to lodging, transportation, local businesses and attractions. You can find out get many more details here:
https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services
Hi squirrelsnanna,
How lucky you are you will have proton radiation. Five years ago, there were only three places in the USA, and they were using proton only in children and very hard to reach places in the body.
I know about the mask, but only think that it is so they do not radiate your eye rather than your nose! Radiation is only a few minutes, so I would close my eyes and think of beautiful things, or pray. It went fast.
I stayed at the cancer society lodge in Baltimore. It was a great experience. We were about 40 patients and 40 companions. We called radiation "the tanning both". People went in the evenings and brought dinner, some of them survivors. We joked and laughed and shared. The lodge had been a hotel in the past, so it was confortable. We shared a kitchen. A space in a fridge. Mrs. Brown( the manager) was like a sergeant, and kept us on a leash. We made friends that we keep in contact with and it is so nice when you hear their voices and they are still alive! Do not be afraid; all of this will pass. Even my mouth is not so dry as of lately.
It will be difficult. The burning of the mouth is the toughest, because they do not want you to loose weight. Keep your mouth very clean. They will give you a mixture of pink stuff to swish your mouth. Use it. Follow their directions to the t. They are great at mayo. I was not treated there, but my sister was, just recently. In Scottsdale. First class. I spent three weeks with her in April.
I would be very interested to hear about your experience with proton.
Good luck! Loli
Sounded almost like fun, Loli. I was driven in each day by volunteer drivers from the Cancer Society or by friends and family. Funnily enough, it was quite a social time.
My name is Jim. I was diagnosed with metasticized renal cell carcinoma in 2013. It had been controlled until June of this year when new activity appeared in my lungs. My oncologist switched me from sutent to Opdivo. At about that time, a pain developed in my throat near where my tonsils are located, so my oncologist prescribed an antibiotic. That did not reduce the pain, so he prescribed another course of the same antibiotic. After two months on the Opdivo, I underwent a C/T scan that showed more activity in my lungs. The decision by, my oncologist, was to switch me to Cabometyx. I decided to get a second opinion from Oregon Health and Sciences University. While there, I saw a head and neck surgeon who took a sample tissue of the area in my throat that was giving me problems. It was sent for a biopsy that showed it to be squamous cell carcinoma. It has grown to develop a very obvious hole in the soft palate. I am scheduled to have a P.E.T. scan done this Tuesday to see if other areas have developed to decide on future treatment.
My name is Benjamin Hartman. I was diagnosed with adenoid cystic carcinoma in 2012 in my rt parotid gland. I'd been clear for the past 6 years, but 4 weeks ago I learned that the ACC had spread to my lungs. Had surgery this past Thursday and will then undergo targeted radiation.
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1 ReactionSo sorry to hear of your recurrence. Good news that it was surgically removed, and is the radiation to that area of the lung? Were you able to have a VATS procedure or was it an open thoracotomy? I had SCC in my ear canal and have had two lung mets removed, 18 months and 3 years after my initial surgery. Both were removed surgically via VATS at Mayo but no radiation afterward. The second one was an extension of the first, so I wonder if your radiation will help to clear the area. What kind of side effects are expected from radiation? Good luck with your recovery.
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1 ReactionI have had Errosive Lichen Planus for about 35 years. I have it vaginally, and orally for 35 years. I have from time to time had very painful lesions. I have been tracked by oral Specialists with steroids and autoimmune drugs. I have been pain free for a couple of years and resist any oral steroids like Prenison because it makes me sick internally.
I one was prescribed medicine used to suppress the immune systems of organ transplant patients. I had a very severe reaction and had to take the aid car to the ER.
I am currently having very painful lesions. And cannot find any physician who knows how to treat my symptoms.
Tried to make a Mayo Clinic appointment but no one there was interested in talking to me. Others I have seen in AZ do not have knowledge about my disease including the dentist.
Any advice! Thanks Mary
I see a specialized Dentist in Orange Park (FL) for treatment of Lichen Planus. I use a Nystatin/Dexamethasone solution rinse 3x daily.
My name is Paul. I was diagnosed with cancer inside my right cheek in June of 2016. I underwent a flap surgery followed by 33 radiation treatments (in addition to a clinical trial with Cetuximab, which I wasn't able to complete). I thought everything was fine until a recurrence the next year. I had another flap surgery (which was much more extensive than the first) but no other treatment. Then in 2018 it came back yet again, this time on the outside of my cheek. I wasn't given much hope, really, but I persuaded the medical team to try immunotherapy. It didn't work at all. So this past fall I started on chemotherapy, once every three weeks (carboplatin). My quality of life isn't too bad, really, as I can still eat on my own and other than the huge wound (which seems to be healing) and the chemotherapy side effects, I'm pretty well off. But the medical team keeps reminding me that this chemotherapy will not cure the disease, but will slow it down, at best. That isn't what I want to hear, as I'm only 52 years old and otherwise in excellent health. I'd be interested in hearing from other folks similarly situated. Of particular interest is the recent development at the Mayo Clinic of treatment with the measles virus, which I understand is headed for clinical trial with squamous cell carcinoma patients.