I could really use some advice. My husband is being treated for tonsil cancer with radiation and cisplatin. Chemo was two weeks ago, and he has just completed his second week of radiation. During this time, he has maybe had two days that he consumed even close to a normal amount of calories. He does not want a peg, but he sure seems headed that way. Yesterday, he had a Carnation instant breakfast, half a can of soup, and maybe two bites of other food. He's had some nausea, but mostly just a full feeling or else everything tastes like goopy sand. I've been trying to fix every kind of food he mentions he might like, but he takes two bites and can't eat anymore. He just gets mad if I try to encourage him, but I'm so afraid he's going to end up in the hospital or impair his recovery. Does anyone have any advice on how I can stimulate his appetite or how I can encourage him to eat without making him mad? What has worked for you?

I am sorry he is having problems already. Food and water are not optional here. Its required. Eating will become much more difficult. As a caregiver its your job to do your best to gel calories and water in him. 2500 cals and 48 oz of water is safe zone, more is better. At two weeks, taste is all but gone. He will get over it as we all have. Have lots of Ensure, Boost around and keep pushing it on him. He must swallow as long as you can into treatment. Try diferent techniques, begging, pleading, yelling what ever it takes. As for the peg. Fully discuss this with the RO now. It takes a week or so to get. Have every thing in place incase he needs it. Most of us do.

Good luck and keep us posted. More will chime in and offer suggestions.

Should entertain PEG although that is not so simple at this point. Hockey Dad gave you some great advice and to reiterate calories and hydration are not optional. I am sure Christine will respond and she is very passionate about this subject. Ditto on Ensure or Boost.

If he becomes to dry they may postpone Radiation. I am sure he wants this to be over as soon as it can be. Maybe this can be a little motivation to drink and eat.

Like Hockeydad mentioned you have to do whatever it takes. And please don't take this in the wrong way. But have you tried balling your eyes out the next time he starts to push food that you lovingly prepared for his good health.

When I got to the point where it was painful and no taste. I did have my sence of smell and I would smell my food for a little while. And while eating I tried breathing in while food was in my mouth.(I could do this but it might not be possible for him) This would give me the illusion of slight taste. And taking pain meds about 20 minutes before din. din. made it easier to eat.

Best of luck lotsacats.....Shawn U.

This SO brings back memories of my son and what a difficult time he had with eating and drinking. It is really important to get the right amount of calories and water. If he gets dehydrated that could get really serious. My son had the same experience as Shawn's above, He found he could the sensation of taste by smelling the food. He didn't want the PEG either and there's a lot of information on both sides of the issue if you do a search in the search box upper left. Maybe if you print out the Peg info from posters comments, and let your husband see them, he feel more in control of whether he wants to consider a PEG or tough it out with getting the proper nutrition and hydration. After pleading with my son and doing everything I could to try different foods and only having him get angry with me, I finally followed the advice of someone who told me to "Put my nurse from hell hat on". So I got my courage up and in my most threatening voice I told him that if he didn't start eating right away, I would call my daughter (a policy officer with a gun) to come over and we would both get him into the car and take him to the hospital for a peg and some tube feeding! And that's what did it for him! He's been a cancer-free survivor for 7+ years! Does your husband use the Magic Mouthwash that dulls the mouth pain for a little bit so he can get some food down? That did help my son and a lot of people here. Sometimes you have to try a lot of things before you find something that works. Reactions to what works can change from day to day.

It's mult-factor at this point, with the pain, swelling, lack of saliva, lack of taste, mucocitis, swallowing ability, thrush and other bacterial, viral infections, lack of appetite, energy, and psychological, etc, so it's not one thing that is going to solve all the problems to make one want to or able to eat, plus it takes time. If you try to deal with each one, then maybe eating will improve.

As far as increasing appetite there are presciption meds, and OTC products you can ask the doctor about, foods, like marinol, megace, corticosteroids, steroids, caffeine, wine, sugar, fat, oils, sugar and oil are in most snacks, so you don't stop eating them. Even seeing food can increase appetite, and watching those cooking shows may do it, looking at cooking magazines. Smelling food, but sometimes some may have learned smell aversions from treatment. Some go to a buffet to sample foods to see what is tolerable, tasteful or not instead of eating time and money cooking what one may not eat. There are many other things involved.

Good luck.

As a caregiver there are limits as to what we can do. Kevin got mad at me too and there were days that he would not eat, but he did realize that he was beginning to lose weight like crazy so he worked on finding things that worked. He got a peg, but hated it and, after trying it a couple times, refused.
If your husband doesn't get the mandatory intake, he will most likely end up in the hospital and that may be what it takes for him to come to his senses. They are grown men...we can only do so much for them. Dragging their butts to the hospital is one!
Good luck,
Kathy

Welcome to OCF! Please check your messages as I have sent you a private message (PM). Its important that you add a signature so we can help you easier. Full instructions are included in the link on the PM I sent. As a caregiver you have a difficult job. Please dont forget to take some time for yourself too. This can be especially important as the treatments go on and it becomes more difficult.

As an adult, your husband must help to assume some responsibility for his care. I suggest you print out a bunch of the responses and show them to him. If he is the type that wont bother reading them then you can "accidentally" leave them lying somewhere you know he will find them and pick it up to read. Make sure its someplace where he will be able to read the posts in private so he wont feel like you are telling him what to do. This has worked quite well for many of the 'stubborn' ones.

Every single day your husband needs to take in a minimum of 2500 calories and 48 oz of water. If he chooses to cut corners and skimp eventually it will catch up to him. He may think he knows best and can do what he wants with his nutrition but he is WRONG! This is a sure way to get a fast track admittance into the hospital for malnutrition and/or dehydration. Im sorry to be so blunt but this is something that cant be fooled around with. Ive spent many a night hospitalized because I was too lazy to set up my feeding pump, I would just stay in bad and sleep. Ive seen many stubborn patients come thru here with their caregiver working so hard to help them but the patient fights them every step of the way. I hope you are not in that situation and your husband will realize its his life that is on the line and he must begin to step up and work at what he can control which is his intake.

Some caregivers line up all the water bottle the patient needs to drink per day on the counter. That works with ensure or boost too. This helps the patient to keep track of their intake and they can see progress as the day goes by to get rid of all the bottles before its bedtime.

Hope tomorrow is a better day

Best wishes!!!

Many, many thanks for the great suggestions; I'm going to try as many as I need to keep him moving toward recovery and to keep him from having to go to the hospital. Something will work on him eventually. At least he is very good at staying hydrated.

He absolutely hates the Ensure and Boost, but I'll try to get him to try it again now that his taste has further diminished.

Thanks Again!

Hi, lotsacats

There are a couple of problems with the bottled drinks - the flavor and the consistency: they are emulsified so that they do not separate on the shelf, and have the appropriate consistency of latex paint.

The solution my husband and I worked out was that he would force do one of the high protein drinks at work (I would call and remind him to do so), but I would make him a breakfast and dinner shake. As he lost the taste sensations it wasn't a case of making things taste good, it was a question of making them less dreadful. We did this with a combination of a packet of Carnation Instant Breakfast, milk (I rotated cow's milk, soy and almond just for the variety), protein powder. Other ingredients were whey powder, ice cream fruit (peaches were the mildest for him), baby oatmeal and rice cereal. And Benefiber!!! Even though nausea is your husband's major issue now, the question is still finding the most tolerable nutrition, timing, location to eat, etc.

The above was not perfectly balanced nutritionally (talk to a dietician if you are able), but it did get him through therapy without drama.

A couple of other tips:

Constipation (caused by change of diet, pain meds) doesn't do a thing for your appetite, so make sure that is attended to.

As the radiation caused more pain, my husband would drink his shake standing up at the sink as it was easier for him to swallow. I wonder if this would help with the nausea, too?

Be careful with any cooking odors. If he is having nausea issues, cooking up a big pot of corned beef and cabbage may not be the best plan. This may or may not bother him, but a friend did mention this was something to watch out for.

Best of luck to you both,
Maria

PS: My husband still has a breakfast shake with milk, whey power, fruit and cooked oatmeal. When he does one with apples, he adds cinnamon and cloves. Really tasty.

Hi Lotsa

Alex had the same issues. He declined to eat until he was 105 lbs (he is 6'1") was hospitalised to be fed with a pump over a 10 hour period everyday through a PEG.

Alex, too, complained of "feeling full" after 3 spoonsful or gulps of formula. If I pushed him, and he had the 4th, he threw up. This led me to doing a little research to try and figure out what was going on.

This is what I learned:
1. chemotherapy (and radiation) causes mucositis. Whilst radiation causes it wherever the beams were aimed, the effects of chemo goes all the way through the gastro-intestinal tract. This means that your husbands feeling full and consequent failure to eat is not a wilful thing so hassling him about it probably won't work. Trying to find a way round is your best shot. For Alex, it was pump feeding overnight for months and then 2 mouthfuls of Ensure Plus every half hour or so. Painfully slow, extremely annoying but we found no other way. Hopefully your husband can try the slow sips method and not have to resort to the pump.

2. A shift in thinking needs to happen so that you and your husband stop thinking about food as a fun thing to do and start thinking about it as a part of treatment. Just like a nasty antibiotic that makes one feel ill, a smart person will keep taking it because they know it is making them better - even if it doesn't feel like it at the time.

3. Trying to stimulate appetite based on things he likes (or used to like) is mostly a waste of time as by the time he eats it, his appetite is likely to have gone, the food tastes wrong, that feeling of fullness will sabotage his best intentions or all of the preceding. Try finding things that are easy and quick to prepare, and can be made in small batches or will last all day.

Alex eventually got used to Ensure Plus - the turning point was when he started treating it as "treatment" not food. However, it took him months to get to this place. In the interim, he was made to feel like a failure by me, his doctors and our well meaning friends. Try to protect your husband from this sort of criticism - it is not productive. Approach the issue as a problem solving exercise but make sure he is aware that if the problem cannot be solved, PEG is the next option, and possibly hospitalisation. He doesn't need to be told this over and over (as I did with Alex and which is my greatest regret)as your husband will know this and repeating it will not solve the problem or cause him to try harder.

Assuming he is well aware of the consequences, he is not being wilful, he just can't.

Having said all that, he DOES need to be encouraged to push himself right to the limit as this WILL give him an easier time of his treatment.

good luck - this was the hardest part of Alex's journey and it should not be underestimated.

Karen - beautifully said.

Ditto

I read several of your responses to my husband Sunday night, and it must have got him thinking, because Monday he ate better and started talking to me more about different things he thought he could tolerate. We saw the RO yesterday, and he said that everything is on track so far. My husband has lost some weight, but not as much as I feared. We're going to try a protein powder since he absolutely refuses to drink Boost or Ensure, even the "slow sips" way, but said he might be willing to try that method with something less disgusting. If anyone has tried a whey or protein powder that mixes up into something more palatable, I'd love to hear what brand. The health food isle at the grocery store set my head to spinning! Thanks, everyone for your support and kind words.

You can buy unflavored whey protein powder in many grocery stores and pharmacies. It is easily added and will dissolve in any liquid. How about making a milkshake and adding it to that?


Chocolate peanut butter milk shake recipe
(I dont measure so everything below is an approximate amount)

3 or 4 cups chocolate ice cream (regular not low fat)
2 cups of whole milk
2 tablespoons of peanut butter (smooth)
1 scoop whey protein powder
1 scoop carnation instant breakfast powder
2 tablespoons chocolate syrup

Blend this for a couple minutes until it is very smooth and creamy. Top with whipped cream. Each shake has about 2000 calories.


I suggest not to disclose how many calories are in the shake to your husband. That way he will continue to try to take in more every day. If you can get him to drink just one shake per day thats half the battle right there. Try to encourage him to eat healthy with everything else.

Here is a list of easy to eat foods that should make it a little easier for him.

Easy to Eat Foods List

When I was in Tx we had Carnation Instant Breakfast VHC which is now called Boost VHC. It has 560 cals in that 8oz can so I only had to swallow 5 to 6 a day which makes a huge difference. Anyway I would alternate every hour swallowing a can of the VHC and a can of water all throughout the day. I would stand over the bathroom sink and close my eyes and chug the can down as fast as possible and then wait a few minutes to make sure I wasn't going to get sick. As my Tx side effects got worse I would pinch my mouth shut to prevent me from easily tossing my cookies. Point is I thought it was better for me to swallow it fast vs slowly.

Tell him to FORGET about the taste thing and worry about saving his butt!

Hi, Lotsacats

Sounds like you are both making progress. My husband finds the Now brand whey protein power in natural vanilla flavor to his liking. Interestingly, he found the imitation flavors to be the least palatable.

There is a big difference in how people respond to the therapies - some patients find chocolate good, but my husband found it vile early on. So, you will have to experiment.

Best wishes to you both.

Maria

I use us warrior, chocolate it's a complete protein.. add some fruit or even peanut butter...

During my Tx I didn't loose my sweet taste and in fact it was probably amplified but I couldn't stand chocolate as it became extremely bitter to me. Post Tx and even today my sweet taste is acute. I even taste sweetness in black Cuban coffee and chocolate became normal tasting soon after Tx.

Christine the shake is great. I am doing 1 a day to get my weight back. Shakes were my savior during and post but I needed this recipe early on. Hopefully others try.

So glad you like it, James! While I was recovering from rads, I would drink 2 or 3 a day plus eating and doing the peg tube overnight feedings. One day I totaled up my intake and was shocked to see 7000+ calories a few days a week. Even with that gigantic amount of calories, I never gained an ounce until a few years later.

Great suggestion on the choco protein shake.
I bought one of those high powered blenders (OC folks can get discounts, check the websites), and wanted hubby to start with the GREEN shakes (full of Kale, etc..) but found that the chocolate/banana shakes were a great starter. I still make them once in a while, cuz now after several months and 'experiments' he can down a green shake! I've added fresh ginger for nausea, raisins or dried plums for iron (like the kale &/or spinach isn't enough). See my other posts for other nummie ingredients!

LOVE a power shake... seriously starts my day every day... YUM! hopefully things continue to progress well. hugs

Sending hugs. It is not an easy place to be in as caregiver with the nutrition. I too was at wits end with my husband, but his probs came much later. We finally had a fdg tube inserted the last week of his treatment after loosing over 50 pounds! In the beginning , I would have him come grocery shopping with me to pick out things he believed he would tolerate.he was making up his own smoothies for awhile adding various things, peanut butter or various fruit. Allow him variety and lots of choices. There is a good listing on this site for soft foods which is helpful too,and a good pantry filler...as far as nausea, talk to MD and tell him nausea not well managed. If one drug doesn't work, another will. Rx Zofran was a life saver, great drug for nausea. It's been a couple weeks since your post , how are you
Both doing? Stay on site, great place for support!

Thanks for the hugs! He still is having a great deal of trouble eating (by that I mean drinking nutritional drinks). His gag reflex is going crazy and thick mucus grosses him out constantly. He's lost 30 pounds since the start of this. However, today is his last day of rads. We know he won't improve right away, but at least there's a light at the end of the tunnel. I am pleased with his willingness to keep trying new things, even though we have had little success. On a good day of experimenting, he'll actually take in a few more calories than on days when he just tries to gag down some Boost, even if most of the experiments end up down the sink.

You are absolutely right with the word experiment. My cupboard is full of mine. We made hydration number one high calorie high protein shake number two and then whatever appealed to me. Fortunately I had a PEG to maintain base nutrition. The experimentation will continue for awhile so be patient.

Congrats on finally getting thru the rad treatments. Its not easy at all and the road to recovery will be a very long and sometimes frustrating time. The most helpful thing you can do is continue to push the high calories and hydration with attempting to maintain the 2500 calories and 48 oz of water every single day for at least the next year. His body has been thru the war and needs lots of fuel to rebuild itself.

High protein whey powder (unflavored) is an excellent additive to drinks. It dissolves easily and doesnt alter the taste. Add it to a shake or smoothie. Make sure to check with your husbands doc first as from what Paul mentioned a while back his protein can impact the kidney function in some way.

Here is the list of easy to easy foods. Try to make a goal of having your husband try say 2 or 3 new foods a week. Be prepared for the first 3 or 4 weeks for everything to taste like burnt, salty cardboard charcoal. Gradually that will change and one day out of the blue your husband will be able to taste something and that will be his new favorite food.

Hang in there, this horrible ordeal is almost over. You did good!

Easy to Eat Foods List

That's a great milestone to finish the rads BUT dig down deep now. The next few weeks can be VERY MUCH WORSE that anything you guys have experienced up to this point so just be prepared. Seriously if he doesn't have a PEG please consider getting the nasal tube because the way it sounds he will definitely need one or the other at least for 2 to 3 weeks.

Hi, I agree with David, the next few weeks will be tough too. Radiation carries on working. I found the nasal tube was an enormous help and wish Martin had not resisted so long. I could make sure he had the correct amount of nutrition. He just needed to keep drinking. We were also given a nebuluser to help with the dryness and mucus. I also sneaked it maple syrup in everything in an attempt to hide the taste. Our dietician said to us the best way to keep his weight up was dairy, so ice cream, yogurt, creme caramel were present at every meal. Good luck and well done for getting through the treatment.

Its a long slow road to recovery from here. What he's going through is completely normal. It will be frustrating for you, you will probably feel like its your fault but its not. I don't know what weight he was to start with, but its a very common misconception "I can afford to lose a few pounds" and pick it up later. It doesn't work that way.

It is a real struggle mentally when you feel full and everything tastes bad and it hurts to swallow, you have no saliva and gag at everything. But you have to find a way.

Experiment with everything. All calories are good calories right now. Experiment with meal timings. Smaller more frequent snacks. Have a food diary, thats important when experimenting, its easy to lose track and end up eating much less than you thought.

Doing the groceries with you can be a blessing or a curse. It can be really depressing to see the range of food and feel you can't eat any of it. I had a few cries in supermarket aisles. On the other hand visual stimulation can give him ideas for new experiments. Try not to nag him, listen to him and work with him to do what he needs to do. Best of luck and keep up the good work, you've done great to get here.