Caregiver-question about husband 8 weeks post radiation for tongue cancer
My husband is 8 weeks post radiation after having 37 treatments and 5 chemo treatments for a tumor on his tongue. He seems to be in more pain now than weeks ago. He is on a Fent. patch, gabapentin, and 30 ml of oxy every 4 hours. He has lost 65 pounds and currently does not have a feeding tube. He is very nauseated and seems to feel it is due to the oxy. His medication was changed today and he will be substitutuing dilaudid for the oxy. Has anyone had any experience with this?
He can only eat milkshakes, and I've gotten very good at making hight calorie shakes due to the Boost HC and the Benecalorie (both items I have gotten from suggestions on this site, so thank you so much!). The dr. seems like it is not "ok" to get a peg tube AFTER the treatments ended. I am so worried that he is getting too thin. He is 6'2'' and weighs 187 right now. Mostly skin and bones...
If he loses any more weight, should I insist on a peg tube? He is only drinking the shakes and can't seem to find anything else he can eat.
Thank you. I have learned so much from reading all of the entries. God Bless all of you going through treatment as well as the caregivers.
Comments
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Hey the tube!
I too was constantly begging my hisband
to eat. Now he's getting 3000 calories a day plus whatever he eats or drinks and we try to get another 1000 in him Orally. He tries to eat but is severely limited due to trismus. We hope to have that fixed soon.
Get the tube. As soon as possible. Simple procedure and he can use it until he can eat again. It literally saved my husband's life I believe.
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no PEG now, he can do it without (I think)
rsp,
If you can slip another 1,000 calories as noted by gs, it couldn’t hurt. I lived on mostly smoothies for 7 months and quite happily I must say. I was sampling everything, but the bad taste and mouth feel had me all messed up. It did go away and to watch me eat today you would never guess there was a problem.
Matt
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How much weight did you lose?CivilMatt said:no PEG now, he can do it without (I think)
rsp,
If you can slip another 1,000 calories as noted by gs, it couldn’t hurt. I lived on mostly smoothies for 7 months and quite happily I must say. I was sampling everything, but the bad taste and mouth feel had me all messed up. It did go away and to watch me eat today you would never guess there was a problem.
Matt
matt,
Thanks for the reply. It is nice to know someone else who lived on smoothies for a long while after treatment. I was wondering how much weight you lost? That is my concern about my husband. He is 65 lbs. down and seems to have lost a lot of muscle. It is all I can do to get one milkshake in him per day. When I make it, he can only drink 1/3 of it and then he puts it away until lunch, then tries to finish in the evening...
Also, he seems in just as much pain (or even more) than he was in earlier in the treatment. (It has been 8 weeks since he finished radiation...) Is this normal?
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Procedurersp said:peg tube
Thank you for your comment. Did you husband get his feeding tube before or after his procedure?
My husband's cancer was discovered in surgery. So he had surgery, then treatment. He got peg 3 months post treatment.
He is having another surgery in April to hopefully release his trismus since he can't open his mouth more than 7mm. This was caused by radiation and his initial surgery.
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Sounds familiarrsp said:How much weight did you lose?
matt,
Thanks for the reply. It is nice to know someone else who lived on smoothies for a long while after treatment. I was wondering how much weight you lost? That is my concern about my husband. He is 65 lbs. down and seems to have lost a lot of muscle. It is all I can do to get one milkshake in him per day. When I make it, he can only drink 1/3 of it and then he puts it away until lunch, then tries to finish in the evening...
Also, he seems in just as much pain (or even more) than he was in earlier in the treatment. (It has been 8 weeks since he finished radiation...) Is this normal?
This sounds so much like my husband's experience. Once he got the tube things got better rapidly. Pain went away, he got stronger.
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Thanks!georgiasurfer said:Sounds familiar
This sounds so much like my husband's experience. Once he got the tube things got better rapidly. Pain went away, he got stronger.
Thank you so much for your posts about the peg tube. My husband is so against getting one. I made him read your earlier post about your husband getting a tube after his treatment was over. He didn't say anything, but I know his wheels are turning. He is so tired and lacks energy, and I believe a tube would help him as it has your husband.
Does your husband still eat as well as use the feeding tube? Was it a long process to get it inserted? Did he have to go to the hospital to have it done?
Thanks so much!
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Peg Tube
I have been a caretaker to a dear friend with H&N cancer. She had a PEG tube inserted some time after treatment. It was literally a life saver. Also most meds can be given through the PEG which makes things so much easier. It sounds very daunting and, in fact, when I came home from the hospital with her I was actually terrified during the first few feedings. But it is so easy and allows one to gain weight, muscle mass and strength to a degree you would not think possible. It will also take the stress off both your husband and yourself to get calories into him. He can keep should keep swallowing as much as he can. He can also when ready eat anything he wants with the PEG. It is a very personal decision but for my friend it made all the difference.
I wish your husband all the best.
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Thanks!PACE said:Peg Tube
I have been a caretaker to a dear friend with H&N cancer. She had a PEG tube inserted some time after treatment. It was literally a life saver. Also most meds can be given through the PEG which makes things so much easier. It sounds very daunting and, in fact, when I came home from the hospital with her I was actually terrified during the first few feedings. But it is so easy and allows one to gain weight, muscle mass and strength to a degree you would not think possible. It will also take the stress off both your husband and yourself to get calories into him. He can keep should keep swallowing as much as he can. He can also when ready eat anything he wants with the PEG. It is a very personal decision but for my friend it made all the difference.
I wish your husband all the best.
Thank you so much for your comments. I am working on my husband to try and convince him he needs a peg tube. I am convinced that it would do him a world of good.
Your friend is so lucky to have you!
Thanks again!
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PEG maybe, maybe notrsp said:How much weight did you lose?
matt,
Thanks for the reply. It is nice to know someone else who lived on smoothies for a long while after treatment. I was wondering how much weight you lost? That is my concern about my husband. He is 65 lbs. down and seems to have lost a lot of muscle. It is all I can do to get one milkshake in him per day. When I make it, he can only drink 1/3 of it and then he puts it away until lunch, then tries to finish in the evening...
Also, he seems in just as much pain (or even more) than he was in earlier in the treatment. (It has been 8 weeks since he finished radiation...) Is this normal?
rsp,
I lost about 45 lbs. and did have 2 PEGs, one very bad and one very good. I had it popped at two weeks post and never looked back. I never had a hard time with smoothies, in fact, I loved them. I never had bad pain, but did have extreme mouth, throat and tongue discomfort (and went through 6 bottles of magic mouth wash).
If he is not having difficulty drinking the calories and instead is just feed up with them, then I think he needs to take a hard look at what is bothering him. There are times when a PEG is the answer, but at 8 weeks post he should be moving in a positive direction. Make sure the doctor knows of all his issues and evaluates his situation carefully.
Matt
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ThanksCivilMatt said:PEG maybe, maybe not
rsp,
I lost about 45 lbs. and did have 2 PEGs, one very bad and one very good. I had it popped at two weeks post and never looked back. I never had a hard time with smoothies, in fact, I loved them. I never had bad pain, but did have extreme mouth, throat and tongue discomfort (and went through 6 bottles of magic mouth wash).
If he is not having difficulty drinking the calories and instead is just feed up with them, then I think he needs to take a hard look at what is bothering him. There are times when a PEG is the answer, but at 8 weeks post he should be moving in a positive direction. Make sure the doctor knows of all his issues and evaluates his situation carefully.
Matt
I really appreciate the insite. You are right... at 8 weeks post radiation, my husband should be moving in a positive direction. I guess that is why I am so concerned. He is not scheduled to see the dr. until March 30th when he has his PET scan. I will see how next week goes, and I may need to make him an appointment to go and see the dr. before that.
Thanks again!
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Peg and eating
Yes he can still eat by mouth. His problem now is with mouth openin. He still drinks some calories and eats soft foods but he can gobat his own pace and still get his calories with the PEG. That's the beauty of the tube. You don't have to use it. My husband was trying to get by on shakes too and he just couldn't do it. He had zero appetite and said he wouldn't eat at all if I didn't remind him. Which then became an issue of him resenting me begging him to eat and get the calories. EVERYTHING changed once he got the peg.
It is an overnight hospital stay at least for us to get the tube. Make sure he is prescribed enough calories with the tube formula. My husband is 6'3". I think his metabolism was in overdrive. He was loosing weight like crazy with a 2000 calorie daily diet. Now he has about 2800 with tube formula and another 1000 orally in some form.
Good luck. I hope he'll get one. My husband says almost daily he wishes he'd done it sooner. It's not a permanent thing but I believe it saved him. It also took major stress off of me.
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Get the PEG Tube
Whenever I tell folks my story, I tell them my biggest regret was not getting the PEG tube sooner. I made it through 28/33 treatments until I finally got so dehydrated and so weak, I had to finish my treatments as an inpatient. I went from 165-135. But now that your husband is post treatment, I'd still get the PEG. As someone said, I took all my meds via the tube. And we got a gravity pole, so I would hang a bag on the pole while I tried to eat a shake, scrambled eggs, soup, or whatever. But I knew I was able to get calories through the tube. Get the tube-it will help get your husband the calories he needs to recover.
Best of luck.
Bugsy
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Thanks!bugsyboy said:Get the PEG Tube
Whenever I tell folks my story, I tell them my biggest regret was not getting the PEG tube sooner. I made it through 28/33 treatments until I finally got so dehydrated and so weak, I had to finish my treatments as an inpatient. I went from 165-135. But now that your husband is post treatment, I'd still get the PEG. As someone said, I took all my meds via the tube. And we got a gravity pole, so I would hang a bag on the pole while I tried to eat a shake, scrambled eggs, soup, or whatever. But I knew I was able to get calories through the tube. Get the tube-it will help get your husband the calories he needs to recover.
Best of luck.
Bugsy
I really appreciate your comment about getting the peg tube. I will be having my husband read your comment in hopes that it will help convince him that he needs the tube. I will let you know if he gets one!
Thanks again, and best of luck in your recovery!
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I'm convinced!georgiasurfer said:Peg and eating
Yes he can still eat by mouth. His problem now is with mouth openin. He still drinks some calories and eats soft foods but he can gobat his own pace and still get his calories with the PEG. That's the beauty of the tube. You don't have to use it. My husband was trying to get by on shakes too and he just couldn't do it. He had zero appetite and said he wouldn't eat at all if I didn't remind him. Which then became an issue of him resenting me begging him to eat and get the calories. EVERYTHING changed once he got the peg.
It is an overnight hospital stay at least for us to get the tube. Make sure he is prescribed enough calories with the tube formula. My husband is 6'3". I think his metabolism was in overdrive. He was loosing weight like crazy with a 2000 calorie daily diet. Now he has about 2800 with tube formula and another 1000 orally in some form.
Good luck. I hope he'll get one. My husband says almost daily he wishes he'd done it sooner. It's not a permanent thing but I believe it saved him. It also took major stress off of me.
Thanks so much for sharing! I will definately be having my husband read your latest post. He got in one shake today (1,200 calories...) and was so tired all day and really "out of it". He didn't wake up until 11:00 today and slept off and on all day. At 8:30 he said he was going to bed... I am sure this has something to do with his lack of nutrition...
I will keep you updated! Thanks again for taking the time to share your journey with me. It has been very helpful.
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Here is a collection of weight gain recipes and ideas I have collected. Take care, God Bless Russ
The 2 times I had substantial treatment for cancer I had a feeding tube and both times when it was finished it took a while to gain the weight back. I think now I am pushing to be a bit overweight but I found through my experience it is good to have a little reserve. To gain weight, for now, don't worry about any certain I recommend eating food that has a substantial amount of calories and or fat also. Like bacon and eggs, or sausage and eggs and or pancakes, waffles, etc. with lots of butter and syrup. Cheeses are good to add also such as cheese topping on a bowl of chili. Also after my last bout out of the hospital, I had lost a good bit of weight also and had a bit of trouble putting it back on so I purchased Boost VHC (Very High Calorie) and was drinking one in the morning with breakfast including trying to eat at least 3 meals a day of some size. This boost is 530 calories per 8 ounces serving and you can drink more than one a day till your weight picks up. This is a quick easy drink to pack in 530 calories. Usually, the Boost VHC is mostly available online unless you can find it locally mostly regular boost is in the stores. Here is a link showing the product made by Nestle https://www.nestlenutritionstore.com/boost-very-high-calorie.html I bought it by the case on eBay but you can buy it online in many places like Walmart online etc.
Also eat a bunch of snacks like candy, cupcakes, peanut butter crackers, etc. you can fit one in anytime your sittin around. Also, nuts like peanuts, cashews, almonds, etc. have a lot of calories and are even good for ya.
Also here is a weight gain recipe that 2 ladies shared that I found a long time ago related to cancer and gaining weight afterward--
Deb,
So sorry I’ve taken so long to get that receipe for your dad! I checked with our nurses and here it is:
1 box (3.4oz) of instant pudding
3/4 cup half & half cream
1/2 cup of water
1 cup of carnation evaporated milk (use canned not powdered etc.)
Mix together in a bowl then mix with a mixer for one minute until it begins to thicken. This receipe makes 4 servings. We use it to help individual’s we serve who are under weight to assist in gaining weight. As you can see…it is very rich and full of calories etc. Let us know how your dad is doing!
Karen
These Recipes and Tips Are From Debbiel0 on CSN H&N Section
And here is another communication shared recently with me by a lady on this forum concerning weight gain after cancer treatment and I am sure she would be glad if I would share it--
- Coffee cream ( 18%) 1 cup 480 calories
- Coconut milk 1/3 cup 150 calories
- Greek style yogurt 1 cup 270 cal
- 2 tbsp Ground Flax seed 100 cal
- 3 tbsp Hemp Hearts 170 cal
- 1 tsp nut butter 100 cal
- 1 tsp honey 100 cal
- banana 80 cal.
I would mix all of the above into a shake for my husband. It makes about 3 - 3 1/2 cups and 1300 calories.. he would sip on it all day. Then we would make him soft eggs or oatmeal to top off the calories for the day. Jello or pudding and ice cream are also another easy foods to slide down.
Using coffee cream when making soups, or sauces, cooking oatmeal in it, using it for puddings. Is an easy way to boost calorie intake. The Hemp Hearts and ground Flax can be expensive. If you have access to Costco, they are reasonably priced there. ( at least in canada that is the way it is)
Use honey as much as you can in tea or coffee, or just in warm water.
I think the best advice I got from our nutritionist was to think outside the box and add cream or greek yogurt to what ever you can think of. Throw in a couple of tbsps of flax or hemp seeds to soups, your boost, hot cereal cooked in heavy cream. Mashed potatoes with heavy cream and lots of gooey gravy is always good too.
Hope some of these ideas help. Another well balanced change from boost is Soylent. I cant remember the calorie count, but it is a very good meal replacement.
I know I am kind of rambling... but hope some of these ideas help, or at least give you a variety. It is hard to get excited for a meal that is same as the last one!
Split pea soup and baked beans with honey are great for calories..
The flaxseed and hemo hearts dont change the taste all that much..just a way to sneak another 100 calories in. I had never ventured into that type of food either. My daughter in law is super healthy, and introduced me ( young ones, ya know!)
Almond butter or cashew butter is just another alternative to peanut butter. Change up the taste a bit.
I have a long list if food allergies, no dairy, no cheese, no chocolate, so finding calories was really tough for me. Example, geek yogurt can be up to 270 cal, my non dairy yogurt is 60 calories. So, when my husband was going thru his treatment it was actually fun for me to keep finding new things to make for him. Cheese is another good source of calories, melt it and add it to soup, potatoes.
Take care Russ. Maybe sit down and try to enjoy a slice of pumpkin pie with whipped cream!
Also Here Are A Few More Postings For Weight Gain From The Forum
Flyinhigh says:
High calorie
I use a powdered mix from GNC called 1340. If you followed their mixing instructions and used 4 large scoops with water and you supposedly get 1340 calories. I mix it half or third strength with 12 oz. of milk and figure I get 500-600 calories, plus a lot of protein. You can try this and if you don't like it or can't tolerate it GNC will take it back and refund your money. It comes in vanilla, chocolate or strawberry(my favorite).
Grandmax4 says:
calorie
I used a drink called Scandishake, bought it through Amazon. It's really good, can't remember the calorie and protein, I made it with crushed ice and milk in a blender, delicious
Drivingdaisy says:
Drinks
Only drank Orgain, organic and small amount of natural sugar. Decided no more chemicals in My body. I just poured it in My feeding tube. I still drink it but the plant based. Became lactose intolerant. Good stuff. I'm more of a naturalists but to each their own. Going on 4 yrs NED, so did something right.
Suzj says:
if you want to mix it up..
If you get the urge to mix it up, go with a high Protein Boost, mixed with a carnation instant breakfast, and a few scoops of Ice Cream - that'll up your calories
Vitamix Recipe
Here's my radiologists recipe. You can change the flavors by finding a substitute for peanut butter , using a different fruit or a flavored yogurt. These are mixed by my better half in a vitamix machine.
1 cup ice cream
1 cup greek (or any full fat) yogurt
Pack of Carnation instant breakfast
1/3 cup peanut butter
1 banana
Milk to thin to the right consistancy
Benecalorie
ByeByeCancer says:
Benecalorie
I wanted to comment on what I used for my husband when he was going through all of this (6 years ago). He had a tough time swallowing food but he, like your husband, wanted to try and keep eating on his own. So, I found a product called Benecalorie on Amazon. It is a 1.5 oz container of liquid that has 330 calories and 7 grams of protein. I would buy the 24-pack and add them to his smoothies, Boost drinks, and there was a time or two when he just drank the benecalorie by itself in one swallow. "Easy" calories in one gulp.
Here is a link to the Benecalorie on Amazon. https://amzn.to/3PC75Y6
~Sandra
In Closing:
I too and most folks on here had trouble swallowing and getting some foods down but it will come just be patient but for now eat what goes down easiest with a high calorie count. You may have to add liquid as you eat whatever you prefer. Try donuts and coffee. Eat in small bites and be patient. With my 2 cancers and 2 radiations to this day, I am thankful I can still eat but it is just a slower process. but in your case, it will probably come back completely. get with your speech therapist and do your swallowing exercises. I assume you have had contact with a speech therapist on this journey because most of us have it is standard procedure in this Head & Neck cancer game. if not contact your doc and get one assigned to you.
Lastly I highly recommend that you Do Not have your PEG removed until you can have a stable weight or have some slight gain in weight going on but it is your choice. I know after my first cancer they would not remove my PEG tube until I could maintain a stable weight for 2 weeks.
Be patient and Eat, Eat, Eat.
I hope some of this rambling helps you in some way-Wishing You The Best-Take Care-God Bless-Russ
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