Hello all. Very glad to find this group for your wisdom and encouragement. My brother is 54. Been smoking since he was 12. Had a sore throat for 2 years, but no healthcare and didn't make an effort to get himself to dr. Finally did and he has a mass on left side of throat. Stage 3 SCC of Supraglottis. We are on radiation #26 or 35ish. Last week after his 2nd of 3 chemo/Cisplatin infusions just couldn't get his strength back and mouth sores really took over. Monday he had his first hydration via IV (not including when he has chemo), as he was a bit low and just not feeling well. Had ran a fever of 99 and 100 all weekend. Tim lives in a very rural part of Missouri and the hospital he is getting treatment from is 105 miles one way. He also has Anxiety, so his desire to be at a hospital is less than most. He said he is "overwhelmed" by all of this right now, but determined to beat it! Today his urine output is poor and also very dark orangish brown in color. This is a new side effect. Tomorrow he is going to tell the nurses/drs. Had I known this detail I would have insisted the nurses check it out, but due to his anxiety, he will withhold info like this. So, back to my original reason to post. Mouth sores, severe tongue and throat pain. I am trying to gather all ways to overcome. He is using magic mouthwash, a steroid swish and spit, liquid oxy, salt and baking soda rinse and he has been drinking a minimum of 100 oz of water or more each day. Thus far he hasn't lost weight, but it seems this afternoon he hit a wall with eating. Tuna salad is one of the easiest foods for him right now. He uses quite a bit of mayo and boiled eggs with tuna. Drinking half and half as well as heavy cream. He has blood sugar issues, but drs told him not to worry, but he is use to not eating much sugar. I've tried to get him to drink a milkshake, but he thinks too thick and cold seems to really hurt. Room temp is best for him. My brother and I were estranged for approx 20 years and just since our mom died August of 2016 have we become close again. I am so sad and afraid. All tips, suggestions and encouragement are truly appreciated. Karen, Tim's sister.

If he's actually eating real food, he's way ahead of the game! Lots of us are on feeding tubes at that point. Good for him! Has he got enough painkillers? I didn't even know what they weren't offering me till I broke down crying one day before a rads appointment ... they were saying "Wow, and most patients break down before this!" as if I had been trying to break some kind of pain record, when really I just didn't know I had options! And guys generally don't go for the 'break down in tears' thing. The urine thing sounds like dehydration, maybe? I don't know much about that, but I know they put charts up at camp for the boys in the summer so they can tell when they are dehydrated, which sounds funny but apparently is helpful for them. The darker, the less hydrated, I gather.

Let him know that hitting a wall is normal. Annoying and miserable, but normal. It stays bad for a few weeks after rads are over, and then it slowly starts to get better. He may need painkillers and anxiety meds to get through this part, if he hasn't got them already. And it's okay to ask for them. Ask for special nutritional formulas and prescriptions to get them, if he needs ... they can get pricey and sometimes insurance will cover it.

((hugs)) Sounds like you are being a good caregiver ... hang in there!

I was taught to check the color of the urine for dehydration the time when John became dizzy and passed out while he was having his weekly check-in session with his RO. It never even occurred to me that he could be dehydrated. Like Kristen mentioned above, the darker it is, the more dehydrated the person is. It will help your brother to get IV fluids at the hospital, before/after his treatment. He will find himself re-energized on the same day. I am a bit concerned about the temperature he’s running. The temperature can be an indication of an infection. I was told never to give John Tylenol as it will mask the infection by suppressing the temperature. I should think the doctors need to be informed and should have the temperature investigated.

At our hospital, there is a nurse on call on the phone after hours. Patients/caregivers can call at night or on the weekend about any problems. I did that a couple of times — especially the time when John developed deep-veined thrombosis. The nurse told me to take him to ermegency ASAP. I was really reassured by the service as I felt I wasn’t alone. If your brother lives so far away, maybe you can check if there’s a similar set-up at his hospital.

Does Tim have a feeding tube? If he does, he should be using it now. It is too hard to have to struggle to swallow on top of all the pain and mouth sores from radiation. He really needs to have adequate nutrition and hydration.

I’m sorry your brother has such a long haul to treatments! Is it possible that he has somone to drive him? Otherwise, he is doing very well in treatment #26! If eating becomes too difficult, they can input a nasal tube, as recovery can take just as long as treatment was. They put in a nasal tube vs a gastric tube when eating is impaired for less than 6 weeks, and surgery for a peg tube at this point, may not be optimal.

His medication is pretty standard. Again, if he’s driving to and from treatment himself, the oxycodone, if taken close to his travel, is not desirable, as he can hurt himself or others, besides being illegal.

Eating can become difficult over time. He may want to eat “easy to swallow foods.” There’s a list somewhere here or can we can supply. Most supplement their eating or rely totally on a liquid protein drink that has all the needed nourishment. I had a peg tube, which I didn’t use until about week 3, but after that I used canned protein the center recommended.

I have diabetes, and during chemo, my glucose would go sky high, too high even to be measured by my portable glucose monitor (over 600). At one treatment, I had several, I was hospitalized for 3 days, two were on the weekend, due to dehydration, high blood sugar, which I was sort of glad so I could recover. I had to make-up the day at the end of treatment.

Good luck

Welcome to OCF! We're here to help both you and your brother with info and support.

Im sorry to bombard you with questions but this helps to better understand the situation your brother is in. Are you staying with your brother? If not, is he by himself? Does he drive himself to treatments? How do you know he is really drinking 100 oz a day of water? Thats ALOT!!!

My biggest concern with everything you wrote is his dark urine and not going to the bathroom often. Running a fever is also a sign of an infection. If he truly is drinking 100 oz a day of water then his urine would not be dark or lesser quantity. He also would not need the extra hydration. Chemo can affect the kidneys. When patients are in the end stages of rads, it becomes very difficult for them to keep up with their intake. Their ability to swallow, sense of taste, pain, nausea, mouth sores and general overwhelming fatigue all seem to come together to make the patient one miserable person who feels horrible. This plays a huge role in their daily intake decreasing which in turn starts a vicious cycle of not feeling well enough to eat and drink then by not keeping up with their intake other complications like dehydration and malnutrition start making the patient feel even worse. I suspect your brother is starting to have all the nasty side effects I mentioned which in turn makes him avoid eating and drinking. Its so difficult eating when everything tastes like cardboard, is difficult to swallow, hurts the painful mouth sores and takes so much effort it wears the patient out just by chewing. If he doesnt already have a feeding tube, now is the time many patients start going downhill and end up getting a temporary nasal feeding tube. This is something to discuss with his treatment team, ASAP. Every single thing you mentioned needs to be relayed to his medical team. If his urine is dark, less output and he's running a fever he may need hospitalization to pull him out of this downward spiral. Sounds to me like he has a UTI (direct result of not taking in enough fluids) with dehydration and possible malnutrition. One positive thing is he has not lost any weight. Once the weight loss starts it quickly becomes a big problem as patients also are losing muscle tone too.

I ended up hospitalized several times for dehydration and malnutrition. Those 2 things together will make a patient feel absolutely horrible! I was so sick towards the end of my rad treatments from dehydration and malnutrition I couldnt even walk into the hospital, my 17 year old son practically carried me to the car and put me in a wheelchair to get me into the doctors office. The receptionist took one look at me and sent me right to the back to avoid scaring other patients in the waiting room. My doc walked into the room and saw the state I was in and admitted me before she even talked to me or even checked my vitals. A UTI can very quickly become a serious issue when its paired up with dehydration and malnutrition. I do not want to cause you any worries, Im just telling you what happened to me as a result of being too worn out to set up my feedings and sleeping all day. I did not have a caregiver, my teenage children had no idea what to do when I started going downhill. If my son hadnt got me to the hospital (45 minutes away) I probably wouldnt be here.

Drug stores carry UTI test strips so patients can test their urine themselves and know instantly if they are having a problem with not getting enough water. They usually arent right on the shelf and you will need to ask the pharmacist. Usually patients who are at #26 of their rads are having problems swallowing and with painful mouth sores. If your brother has trouble drinking water due to it being so thin, he can pick up some Thick It at any drug store, maybe even at some grocery stores. This will make liquids slightly thicker so its easier to swallow. Talk with his doc about this. He may need a barium swallow test to ensure what he swallows is not going into his lungs. As mentioned earlier, your brother may need a temporary nasal feeding tube if he isnt able to eat and drink enough on a daily basis. Insurance will cover prescription feeding formulas only when the patient has a feeding tube, over the counter nutritional drinks normally arent covered.

Rads is cumulative and continues working even after rads ends. It gets progressively more difficult as time goes on. Your brother is almost at the worst part of it where most patients are beginning to realize just how bad treatments are and they start to really struggle. The worse they feel, the less they take in and the less they take in means the worse they will feel. To get as far as your brother got without losing any weight is excellent!!! Most patients dont do as well, losing significant amounts of weight. Losing weight rapidly is a sure sign the patient is having a rough time. I cant stress enough how important it is to focus on what is within your brothers control... his intake. Dont be surprised if your brother is not being completely honest about his intake. Im normally a very honest person but when I was at some of the lowest points, I would fib about my intake so nobody bugged me about it. I wasnt up to having big in depth conversations when feeling so bad. Every single day during rads and until he hits the first year post rads mark, your brother needs to take in at the very least 2500 calories and 48-64 oz of water. The better patients do with their intake, the easier it will be. If he can push himself to do more and get 3000 or 3500 calories daily that is even better. This is something I always nag about. I hate seeing anyone going down the wrong path and having a hard time when they can turn things around just by taking a few extra bites or sips. I completely understand just how difficult rads is on most patients.

I hope your brothers medical team are able to help him out from this downward cycle. Keep us posted. When one struggles we all struggle. Best wishes with everything!!!


PS...Heres something that may help, our list of easy to eat foods. These have a smoother texture and are mild without alot of spices that can burn a patients sensitive mouth.

List of Easy to Eat Foods