Meet others living with Head & Neck Cancer: Introduce yourself

Mickey, I am 2 years out of treatment. I can say, I am absolutely stronger physically and spiritually than pre cancer. I know how you are feeling with all the what ifs and how to’s your mind throws at you. Take it a day at a time, follow your doctor’s and nurses instruction. Pray to the God that loves you, and let your friends and family help you.
You will get through this .

Today my husband begins radiation/chemo treatments for parotid gland cancer that had spread to a few lymph nodes in his neck as well as his auricular nerve and skeletal muscle. He tells me he has a wooden ear! (we survive stressful times with humor). Mayo and Cleveland Clinic have been unable to identify the type of cancer but we know it's high grade and very aggressive. From first symptom to surgery was 6-1/2 weeks and so much damage had been done. Mayo has done an extensive genetic panel on this thing, and we are looking forward to talking with someone who can explain them. So he has the cancer with no name but today begins treatment to kick it's butt!

Hi @bankit3, I thought I would check in. The emotional rollercoaster is a pretty normal - and understandable - reaction to hearing about a cancer diagnosis. Have you had your PET scan? How are you doing?

@michgirv, are they referring to your husband's cancer as Cancer of Unknown Primary? How is he doing on treatment? Is he getting chemo and radiation simultaneously? How are YOU doing?

They think the parotid gland is the primary site. His PET scan was clear otherwise. Yes, he is getting chemo and radiation simultaneously and doing really well. It's only been a week so we're waiting for the hammer to drop so to speak. It is stage 4 which made my heart drop. I'm a retired RN and I worked hospice. My husband worked in the lab (retired from there) that got the specimen initially. They knew cancer but further staining confused the issue more. They sent it to Cleveland Clinic and 4 weeks later it came back unspecified type. After surgery Mayo, Jax worked on it and sent it to Rochester and they came to the same conclusion. They ran a sarcoma panel on it which we'll be discussing at the next oncologist appointment. In the report there was a possibility of a familial syndrome and we're scheduled with a genomic specialist in April. We have 3 children, two had melanoma and the other squamous cell of the lip. We also have 4 grandchildren and want to know if this is a concern. As for me, doing ok but I have a severe autoimmune disease (had rheumatoid arthritis as a child) that has affected my peripheral nervous system, blood vessels and now the autonomic system is involved. I also have pulmonary arterial hypertension from autoimmune problems. Asking me how I'm doing is a loaded question! LOL. Trying to stay upright long enough to care for my husband as he has been doing for me. Right now, he's doing better than me! I apologize for the lengthy response and thank you for asking. Life is a mess but taking it one step at a time.

Hi, I join here for my husband to learn from the group
My husband at 71 was diagnosed with Hpv oropharynx cancer in October 2022, treatment radiation and chemo since surgery is not advisable due to not enough margin. December 2022 finished 6 chemo and 32 out of 35 radiation incomplete due to hospitalization cause by toxicity. He is a petite guy 5’2 now weigh 100lbs.
After 2 years now, he still have bitter sour taste in everything he eat and drink, with cardboard texture. Now he said it’s getting harder to eat because of the taste. He is very picky, no meat (except fish), no veggie, no fruit, no protein drink either.
Consulted with nutritionist, try a lot of option, nothing seems motivate him. He is also on antidepressants medication.
I’m very concern now he is declining eat less and less. Anyone heard any study for this side affects that might get better after 2 years.
Thank you for reading.
EBautista

Hi @ebautista2025 The taste and eating issues are quite common. My wife, although she still tries, allows my to eat what I enjoy rather than what is likely healthier for me. My loss of saliva has changed what I can eat or am comfortable eating such as some meats, rice, and breads.
I am your husband’s age and was treated over twenty years ago. I could eat pie every day but I try to eat less pleasurable foods for my health. Maybe ask him what he would enjoy eating and provide that for a while.

Replying to ebautista.
I am 72 years old. Heading into week 7 of external beam radiation and chemotherapy for thyroid cancer that is also on my trachea. I am post complete thyroidectomy.
I have been on a total liquid diet for the last 4 weeks. I use Kate Farms. I buy it online. It tastes good. See if husband will try one each day to supplement his diet.
Take care.

@ebautista2025 , I suffered that as well and depended on a feeding tube for nearly a year. I was unable to swallow food and liquid was difficult as well.
When I made the decision to get the tube removed I was forced to eat or starve. I ate oatmeal for all of my meals for nearly a year. I finally was able to start getting other foods down but they had no flavor. It took nearly another year before I could taste anything. I was prescribed Marinol(not sure of the spelling) to boost my hunger. I had a nutritionist that rode my butt daily about eating and keeping my weight rising. I went from a solid 235 to 140 pounds and she wanted me to reach the 160-170 range. I’m 8 1/2 years out and maintaining 165-170 but eating is still very difficult!
Hope this helps,
MOJO

Hi everyone,
I am a 50 yo female (Arizona) who has lived with oral cancer for 21 years. I never smoked nor used chewing tobacco and it is not HPV related. I have had 22 surgeries and in addition have done topical chemo, chemo shots and immunotherapy. I have had a partial glossectomy, lost 6 teeth and am finally accepting (20 years later!!) that I am chronically ill. I am a Mayo patient and have been for the past 10 years. My care team is wonderful. I am incredibly fortunate to have a caring family and a great support system of friends. I am generally a positive person and try not to pity myself. I always say that everyone has their own thing that they have to deal with and this is just mine and that it could always be worse. I am on here because I have really been struggling lately with the loneliness that accompanies chronic illness and nobody understanding what you are truly going through. It will be nice to find others who potentially feel the same way.