Hi. All. Let me introduce myself. My name is Catherine and my older brother (40) was diagnosed with stage 3 oral cancer last fall. He opted to try chemo/radiation therapy before surgery as his oncologist suggested. He has been through it all in the last 6 months, and is now in the final week of radiation. He was supposed to do both chemo/rad together for these last 8 weeks but his blood work has been coming back with low platelets so they haven't done chemo in 3 weeks (just radiation). He was told in the beginning because of his young age and general health they were going to come at his as hard as they can and give him as much as his body could take to eradicate the cancer from his system. It is working, his lymph nodes aren't swollen anymore and the tumor has shrunk and not visable anymore (it was the size of golf ball). All of his doctors are optimistic that he wont need surgery and this seems to be working for him. Now here he is at the end of this and he is so sick he can barley get out of bed. He is using his PEG tube for nutrition but has still lost a ton of weight. He is a shadow of his former self. Do any of you have any experience with this and any suggestions of what I can do to help him? He told me he feels like he is waiting to die the pain is so bad. Just not sure how much more he could take. I think this is normal (they did tell him that they would take him to the "brink of death" and then bring him back.) Just looking for some support. Thanks - I appreciate you reading this.

Welcome to OCF!

The biggest thing in how well your brother will do with his treatments is how good he is with his intake of nutrition and hydration. Without keeping up with these two things, he will struggle, maybe even end up hospitalized for malnutrition and dehydration. I cant stress how important this is!!!! Ive advised hundreds of patients to pay close attention to their intake and many times the patients who cant take in 48 oz of water and 2500 calories every single day end up in the hospital.

If his daily water intake isnt 48 oz then ask for his doctors to write a prescription for hydration. He MUST get this every single day, not think he can skimp one day and play catch up the next day. Catch up never happens and he will have a rough time due to being dehydrated.

As far as calories go, he must get a minimum of 2500 calories every single day. If he is losing weight and he is taking in 2500 calories, then he will need more to keep him sustained. I know it sounds like too much but its not. Right now his body is burning up calories like crazy and he is also trying to heal which further burns up calories. Since you say he lost a ton of weight then to me it sounds like if he made a change and took in 3500 calories every single day he would turn himself around ery quickly.

Poor guy probably feels horrible right now. But if he will listen and follow what I explained then he will very soon be feeling much better. Even if he would get hydrated at the hospital a couple times per week, he would feel much better. I always felt like a new person walking out after getting hydrated. I was in the same situation like your brother, I really thought at one point I was dying but I was malnourished and dehydrated.

Its all in the nutrition and hydration. He could be feeling better later today if he got hydrated and enough calories in. If he doesnt already have a pump for his PEG tube then ask for a prescription for one. It can run while he sleeps and help him to take in enough.

Please feel free to ask questions and we will help you get him thru this.

Good luck!!!!

Hi, Cally
you are a good sister! Re: the doctor's statement - "(they did tell him that they would take him to the "brink of death" and then bring him back.) - I cannot imagine why they decided to phrase it in exactly that way. Our doctor's phrase - 'the limits of human endurance' was at least not as melodramtic.
As Christine points out, nutrition and hydration make a huge difference - if he is dehydrated it will make everything feel worse. Has he discussed his symptoms with his RO or ENT - or the oncology nurse? If they don't know what is going on, they won't know to help. Perhaps you will be able to advocate for him.
Maria

Thank you Chrstine and maria. I will pass on the info and hope he listens. I know he is trying to keep up with his food and hydration, but the severe nausea seems to always be there. I am getting sick of saying things like " your almost there" and "keep fighting" so I can imagine how he feels. He can't talk right now due to an infection in his mouth. I just wish I could actually do something for him. Can't wait to have this nightmare overwith and have my big strong brother back. This board has provided me with endless information and really has been a god send. Thank you again.

Does your brother have a caregiver who is with him all the time? At some point the caregiver needs to get tough with the patient and tell them "this is how it is" speech and proceed to push the patient to do what they need to. I know when I was at my lowest point, I desperately needed someone to take charge. If your brother isnt one to listen then he will most likely not follow your directions with ways to help him turn this around. Someone must intervene and tell him how serious his situation is, he must get proper nutrition and hydration immediately. If I were in your shoes, I would tell him either you listen and take in more water and nutrition immediately today or you will talk to his nurses and doctor.

Im concerned that your brother is feeling so bad. To me, it sounds like he needs to get hydrated and a big boost to his caloric intake. If he is in pain then his pain meds need to be looked at and adjusted. Many have used the fentanyl patch. A good starter dose would be 50mg, it takes 24 hours to kick in. Its easy to use but the directions must be followed to the letter. Never cut, tear, bend or fold the patch and no long hot showers or baths. Do you go with your brother to his doctor appointments? If not maybe he would let you go and bring these things up to his doctor. If you do have access to his doctor, I would suggest calling and letting them know how badly your brother is doing right now. Ask for hydration in the chemo lab, it will make a big difference.

Im sorry if I sound harsh but Im very concerned about your brothers health. Right now is the hard part but it will get even harder very soon. The first 2 or 3 weeks after finishing treatments the radiation continues to work and will continue to make him feel awful. If he doesnt turn this around immediately he probably will end up hospitalized. I know as it happened to me but I didnt have a caregiver to take care of me. I suffered greatly and I hate to see anyone else who struggles. I hope your brother isnt too stubborn to accept your help.

Good luck.

Do him and yourself a favor. Get some good protein powder (not one with "antioxidants" as I am sure there are some out there - antioxidants work against radiation). Just a straight up protein powder natural flavored since it's going down a tube and add it to his liquid nutrition. Make sure it is well mixed with NO lumps. It may make the formula a bit thicker just add some water to thin it out a bit. This will add more protein for healing and more calories. If you do this to each of his "Meals" then it should slow his weight loss. (choose a protein powder that has maximum calories and protein for minimum amount added. Some of them say 22 gms of protein etc... but if you read carefully it requires you to add two scoops. The one I use has I think 25 gms in one scoop. This will help with the lumpiness and thickness.


For his mouth there should be magic mouthwash prescribed to help with the pain if he is trying to drink or swallow (he should still try to do this as the swallowing reflex could be lost if he doesn't continue to use these muscles). Some formulas are drinkable this will allow a short term relief from the pain. This is only if he is drinking or eating something or having a moment of extreme pain as you can't use it all the time (this mouthwash is a topical medication with a short life span and will numb the area short term). Other pain meds can be asked for and prescribed for long term systemic relief of pain. Do not allow him to be in pain ask him to push his dr. for more medication as what he has isn't helping. Pain is a natural enemy to healing as it puts stress on an already stressed body. (this goes for lack of proper nutrition.)

Finally to help with hydration most hospitals suggest a baking soda, salt and water mixture to swish and spit. My hospital also recommended FLATTENED club soda (the fizz burns like a bugger!!) this is the same formula as the other but this you can drink, so it gives you hydration, and healing and since you can swallow it it helps your throat.

best of luck in these last few weeks.

PS it is worse the first few weeks after radiation finishes. as radiation is cumulative... sucks but forewarned is forearmed.

take care.

What you can do to help your brother is speak up for him. Set up his formula for the PEG tube. When I was at my worst, I would skip feedings as it took too much energy to set it up. I would stay in bed and sleep instead of drinking and swallowing. Help him by keeping track of his medications. When a patient is that sick, they need someone to take charge and take care of them as they are unable to do it for themself.

PS... Try to encourage him to swallow sips of water several times per day.

Does your brother have access to a dietitian where he is being treated? If he is taking in enough formula and hydration, his weight should at least stabilize. Maybe he needs more formula or one with a higher protein content. A dietitian will be able to point him in the right direction.

No doubt about it, the last 2 weeks of rad and the next 2 post, SUCK! However, minutes turn to hour which turn to days. Getting to, and through the next feeding is the only game. Don't worry about anything else.

Sometimes we need a bitch. No skipping feeding, No skipping rads. Drink your water. Get his but in the car we are going to to the center. Get hydration if needed, its short term but instant releif.

I could not talk for three weeks, lost 25 lbs. I looked like death. 10 weeks later back at work. Life is getting better every week.

WOW! You guys are amazing. Thank you all for taking the time to respond. Your comments are helpful and as most of you must know, its always a comfort to know your not the only family in the world dealing with this. He is living with my parents right now and they are both his primary caregivers. I live 20 miles away and stop in several times a week to see him and am in constant contact with the whole family. I shared some of this with my parents who agree that they must get tougher. He went today for bloodwork and they gave him a few bags of saline to hydrate him. And you were all right, he felt much much better. What is this "magic mouthwash" I have read about and someone mentioned here? I asked and my bro hasn't heard of it. He is on the morphine patch for the pain right now. Not working great but making it bearable for him. thanks again!!!!

Callygirl - The Magic Mouthwash is a prescription and the ingredients may vary but it is very effective in numbing the sores inside the mouth long enough to be able to drink or swallow. Ask the doctor about this. My son used it and it was very effective. . . altho' after a while when it quit working, there was an over-the-counter type that the pharmacist recommended that also worked and later he went back to the Magic Mouthwash prescription. Always make sure the doctors know everything that goes in your brother's body (and comes out, too). I might be helpful to make up a spreadsheet with all his meds, how often and how much so that he knows when they are due. Having the doctors' names and numbers on the sheet makes it more convenient to call when needed. Whoever goes to the appointments with your brother can take along the spreadsheet to make it easier to answer the doctor's questions. My son lost a lot of weight too, about 20 lbs but it could be more because towards the end of Tx he was very secretive about how much weight he was losing. You have gotten such good suggestions above. . . maybe you could print these out and leave them with your parents and your brother to look at when you are not able to be there. It's so great that your brother has you and your parents to help him through this tough time. You are a great caregiver and I'm sure your parents appreciate all that you do!

Hi, CallyGirl!

You are a good sister. Your brother is a fortunate man to have you advocating for him. The best thing you could have done to help him was to come to theses forums. So many of us have "been there, done that".

I was hospitalized 5 times throughout my treatment. A few of them were actually after my treatment ended! Not all of them were for dehydration/malnutrition, but one of them was and they took care of those things all the other times I was in there. I just turned 39 years old a week ago. I was 37 and pregnant the first time I had cancer, but I didn't need the dreaded rads/chemo. I wasn't so lucky the second time. I knew what I was in for and I don't know if that helped or not.

You've got a lot of great advice here. I just want to add one more thing. When I was in the hospital, I was given a palliative care consult. Now, I know that sounds scary...like end of life care, but that's not all they do. They specialize in pain management. It was the best thing that they could have done for me. I tried all of the fentanyl patches and oxycodone and I was still not getting my pain managed properly. It was at that point that I felt so badly, I asked to be admitted to the hospital. Now, they put me on a medication plan that I never thought I would be on. I thought the drugs they gave me were only for heroine addicts in recovery, but in fact, these drugs are widely used in pain management for cancer patients. I am now in the tapering phase and I am doing fine.

It sounds like your bro needs to be hospitalized for many reasons to get him through. If he is admitted, ask if they have a palliative care team (or pain management team) that can consult with him and put him on a treatment plan that works for him. It may take a little tweaking, but I'm confident that with the nutrition, hydration, and proper pain management, he will tolerate the treatment much better.

Best of luck. He will make it through with good care.

xoxo,
Kerri

Hi CallyGirl,
When Mike was finishing treatment I was home full time with him. Your brother may benefit from being admitted to hospital in order to be able to focus on resting and fighting his cancer Pain control is of the utmost importance. We had homecare nurses coming in almost every day for hydration. (thank you canadian healthcare :)) Even as an outpatient, your brother should be able to consult with the pain management team and they will work with him to get it under control. Constant pain is very draining and this is no time to "tough it out". Good luck with everything
Take care
Josee