Meet others living with Head & Neck Cancer: Introduce yourself

@mtborz I am sorry to hear about your husband's suffering and yours as well. I had nasopharyngeal carcinoma and I had also the feeding tube for almost 4 months. I think you need to make sure his mouth and throat have optimal hygiene. Maybe he is having difficulties because of an fungal infection or so. So alcohol free mouth wash with biotin are necessary. The PEG tube allows the patient to take shakes like Ensure. But if he still can swallow why the tube? It is important that he keeps swallowing liquids and soft food if he can because the muscles need to be trained to do their job. A speech therapist should be able to help him make some exercises that can help him swallow. He can do a barium swallow to check what's going on. I used to prepare a mouth at home and take it at least 8 times per day. 1 liter of water+ 1 big spoon of sodium carbonates+ 3 spoons of salt. I used to eat soups rich in protein and antioxidants, drink carrot and tomato juice, etc. Bit by bit he will be able to eat normally with one inconvenient which is mouth and throat dryness. So he needs to drink a lot of water.

Thank you very much for your input. Is interesting how no one has mentioned the need to keep your swallowing muscles trained by using them. This makes so much sense! He was just given a new prescription for dry mouth. If this doesn’t work, I’ll try your home remedy. Again, thank you very much.

You sound very onto it. In my answer I was torn between not wanting him to lose weight and knowing the swallowing as a routine thing is so important to keep the muscles working. I'm really sorry he has to go through this and hope someone can put their finger on the problem.

@mtborz

You need to talk with your doctor about getting a feeding tube for your husband. When I was diagnosed with stage IV oral cancer the doctors told me I should consider doing a feeding tube. They told me if I’m unable to consume enough calories and protein I would lose weight. The thought of it was not pleasant but it saved my life. I still lost 15 pounds but it would’ve been a lot more had I not done the feeding tube. The doctors did the calculations and determined based on my current weight of 168 pounds I would need at least 75 grams of protein to maintain my weight. I would suggest in the interim you keep a daily diary of how many calories and how much protein your husband is consuming each meal/day this will help the doctors to determine if he’s getting enough protein and calories. Protein is very important to help maintain weight, it’s not just the calories. For me, I had good health insurance and the doctors ordered a peg food called Jevity. This was shipped to my house and the insurance covered all of it, but it has to be ordered by the doctor after he has a peg tube inserted. I would receive 3 to 4 cases a week. And yes, the dietician and speech therapist should also be working with you and your husband. Toungue exercises with a spoon are very important. I did not do as much as I should’ve but I later realized that was a big mistake. As they once told me, what you don’t use such as the tongue muscles you will loose. As for the neasua, there are meds to help with that, Reglan is very good on calming the stomach. I would also suggest trying Lactaid free milk products. Milk can be tough on the stomach as we get older. One last thing, most people think of saliva as keeping the mouth moist. If you research it you will see saliva has enzymes that break down the food we eat. Without those enzymes we would be just chomping all day and not be able to swallow. The radiation did a number on my saliva, it was all but gone. Dry mouth is very common with you have radiation to the head/neck area. I still have dry mouth today but it’s not as bad. I no longer have to hug a water bottle everywhere I go. When I get dry I use lozenges. I realize the reply is long but I’m just trying to give you as much information as I can to help deal with a difficult time for you and your husband. I only wish there was a group like this for me when I had to go through this. Unfortunately I was on my own. But I’m still here and now able to help others, be well my friend and good luck with your husband. It’s a battle, but it will get better, I promise you.

Thank you so much! You have been very encouraging, dealing with all the issues around this cancer is overwhelming. We have a dietitian but a speech therapist hasn’t been recommended. My husband’s doctors have discussed the feeding tube but believe is not necessary at this time. I have tried different protein powders to add to the shakes. Is there any one in particular you recommend? The dry mouth is a big issue. He just got a new prescription - Pilocarpine. We’ll try for a while and see what happens. In the meantime, he’ll keep the old routine of lots of liquids. I will check on the Reglan. His current prescription for nausea is Ondasetron. Again, thank you so much!

I had stage 4 adenoid cystic carcinoma in 2001. I ate oatmeal and drank Boost drinks for 1.5 months. My dry mouth still affects me. My doctors had me using Biotene products to help with that. I had another cancer patient tell me that Sprite helped them. Because of my dry mouth I am having a lot of dental issues. I am having all my teeth pulled on the top in the next month. I will be getting dentures. If I could give anyone advice with head and neck cancer, get your teeth pulled first. I have been battling teeth issues since day one. I also did neutron beam radiation at the U of Washington. Good luck to you. If I can help with anything let me know. Thanks

Sorry to hear of your dental issues. I was diagnosed with Adenoid Cystic Carcinoma in 2007 and have suffered from dental issues as well. Most all of my teeth are broken and I need them pulled and need dentures as well. My cancer has metastasized to my lungs and liver and lymph nodes and I am trying to deal with that as well. I want to get the dental work done but struggle with the decision. I don't know if I have one year or 5 years to live. Will it be worth it? Not sure....

There are many protein drinks to choose from but you should try to find one that has a limited amount of sugar. As you may know, sugar can promote tooth decay. Some use Boost, however it has 20 grams of sugar, that’s 5 teaspoons of sugar per serving. In the past I have used Whey Protein Isolate powder it has 32 grams of protein and 3 grams of sugar per serving. When I’m in a hurry I have a Glucerna shake, less sugar than most. Pilocarpine is good for dry mouth however be sure to read the side effects. I don’t usually take it at night because it gave me night sweats, but it seemed to help during the day. Just a personal choice. I have dealt with dry mouth from radiation to the head & neck area for 10 plus years now. I’m sure I have tried them all. Biotein for me was okay, just does not give me long term relief. The best product for me is Thera Breath Lozenges. Each lozenger is individually wrapped making it convenient to keep some in my pocket when I don’t want to hug a water bottle. The other product that’s good is XyliMelts. I did not hear about this until about two years ago. You can find it on-line easier than at most stores. As to my teeth, I’ve been lucky so far, lots of dental work but only lost one tooth, so far... I was told to have my teeth cleaned 4 times a year, I do it every 4 months. Best wishes, I hope this can help.

@dakotapat and @kkelly1023 I'd appreciate it if you would talk more about your experience with dental issues in this discussion:
- Teeth and Head & Neck Cancer https://connect.mayoclinic.org/discussion/teeth-1/

There are several related discussions where members may wish to post their experience and knowledge or to ask questions.
- Saliva and dry mouth https://connect.mayoclinic.org/discussion/saliva-and-dry-mouth/
- Anyone Caring For Someone who Uses A Feeding Tube? https://connect.mayoclinic.org/discussion/anyone-caring-for-a-feeding-tube-patient/
- Nutrition and Cancer: Getting protein in my diet https://connect.mayoclinic.org/discussion/nutrition/
- Soft Food Suggestions https://connect.mayoclinic.org/discussion/soft-food-suggestions/

I hope you are continuing to do well. I have had metastatic squamous cell carcinoma for 8.5 years. Multiple surgeries , radiation, and Erbitux have controlled it up to now. Looking at a PDL-1 checkpoint inhibitor. I am wondering how that went for you?