Husband diagnosed with tonsil cancer: looking for tips and support

Boost with 360 calories (rich chocolate) has all the nutrients you need. According to my surgeon and radiation oncologist, it’s basically the same as what is used in a feeding tube, only it tastes better. Count calories and make sure he drinks enough of them to maintain his weight. I drank 5 a day for a while until I could eat other foods to give me more calories. Don’t get discouraged. It’s important that you have a positive mindset to help with healing. You will get better.

Keep focused on the prize - beating cancer!

Good luck to you both. I mentor (listen and answer non- medical questions)folks here and there. Let me know if you or he or both want to talk.

Right now we’re waiting, don’t start treatment until January 10, the soonest my husband could get in, I hope it doesn’t get worse in the mean time. I hope it won’t be too hard on him.
Thanks

My 77 year old husband was diagnosed with throat cancer a year ago in March. It’s been a hell of a year. It won’t be easy and he will need you to stay healthy and strong. I too recommend the feeding tube. My husband is still using it as he cannot eat anything yet that is not mostly liquid. His daily diet has been four Kate Farm formulas which is covered by our ins. I also suggest an IV pole and gravity bags. If there is home health care as part of your clinic they will help. He has recently had his esophagus stretched but will need to have it done again as he has scar tissue in his throat that impedes swallowing. Slowly but surely he hopes to begin eating real food again. I wish you all the best in the coming year and my husband no longer has cancer and that’s the good news.

I had the same diagnosis at age 71. Healthy as a horse and them WHAM! That was ten months ago. I had two surgeries , followed by chemo and radiation. I did struggle to eat but high calorie Boost helped me maintain a healthy weight. I found that I could tolerate it better if I froze it and pretended it was ice cream! I am still struggling other dry mouth and not a great appetite but I am past the worst of it. Good luck to you.

It’s all this waiting, who knows if it’s getting worse. It starts January 10. Then over Xmas we both got Covid so didn’t go anywhere, just cold like symptoms. He’s trying to eat all he can right now. Thanks

What will help his throat until treatment time , we know his tonsil is getting worse, and breathing is harder. He has three more days until treatments.

For me, I used a variety of variety of over the counter products such as a lozenges (Biotene) , gums and sprays (Oasis) to create saliva. For sores in mouth, the doctors told me to use a mixture of a quart of water, a teaspoon of salt and 3/4 teaspoon of baking soda. I would gargle and swish this many times per day. I also used a prescription drug called gabapentin, which helped me tremendously. I also occasionally used a prescription of lidocaine prior to eating.

The best answer lies with your care team. Send the care team, via the portal, a question. I always tried to be as brief, friendly and specific as possible. These people really help and know many things to try.

I was diagnosed with the same cancer on my right tonsil in May. I was told that surgery was an option but that 80% of patients with this type of cancer opted for radiation and/or chemo without the surgery. There was a possibility that the surgery alone could clear the cancer obviating the need for chemotherapy or radiation. I decided to try the surgery but the scheduled date was nearly two months out. I called Mayo as an alternative to the suggested surgeon and fortunately was given an appointment within three weeks. The cancer began to grow rapidly so by the time I saw the surgeon, he ordered another MRI to ascertain whether surgery was still advisable. He said the surgery would be disruptive and potentially injurious to my throat given how large the tumor had grown. I would still have to undergo the same course of radiation and chemotherapy even if I chose surgery.
I chose to not have the surgery.
I live 2.5 hours drive from Mayo so when their radiation oncologist called me (the very next day after the consultation where I opted out of surgery) I asked why I should travel to Phoenix rather than having the treatment where I live. When he explained the benefits of proton radiation therapy over photon (X-ray) radiation, I immediately decided to be treated at Mayo. I have never made a better decision. Mayo is so far superior to any healthcare I have received in the last 20 years. The entire process of treatment seems to have been planned with the welfare of the patient as the priority. From the check-in desk to the care teams, every person my wife and I encountered was compassionate and supportive. The waiting rooms for radiation and chemotherapy are specifically designated for those particular patients. We found such comfort and support talking to other patients and their partners while awaiting treatment. We made a number of friends during the 7 weeks we were there.
I was enrolled in the DART study which is an investigation into the efficacy of reduced amount of treatment for HPV-related cancer, you may want to inquire about this if treated at Mayo. An amazing array of treatment support including a Speech-Language Pathologist, Audiologist, Social Worker, and Gastroenterology team advised us on every aspect and potential aspect of treatment. The care teams at Radiation Oncology and Medical Oncology (chemotherapy) were excellent.
I had 35 radiation treatments, one every weekday and 7 chemo infusions, once a week over the 7 week period. I am cancer free as per a PET scan and NavDx blood test in December. As some commented earlier, I followed ALL of the recommendations the various experts provided. I highly recommend Mayo for treatment. They have some accommodations right on their campus that may assist you if finances are an issue. We rented a nearby condo on AirBnB and came home on weekends. Best of health to you and your husband.

Such a helpful and descriptive post, @marksur. I'm sure this helps @cris2 and many others.

Mark, how often to you go to Mayo Clinic for followups now?