One week post treatment update
My husband is almost one week post treatment. It has definitely been a tough week and he has spent the most part of it on the sofa. He had 35 radiation treatments and 6 Cetuximab. He was scheduled for 7, but his doctor canceled his last chemo because his neck is in awful condition. He got 2 liters of fluid last Monday instead of the chemo & then went back for 2 more liters on Wednesday. He is also scheduled to see his doctor & get more fluids on Tuesday. I am concerned that he is not getting enough nutrition for his body to heal (no peg; 35 pound weight loss) because he drinks only one Ensure a day (2 on a very good day). His neck looks like he has 3rd degree burns (currently using silvadene). He complains of nausea & pain inside his mouth. How soon should we see improvement? Is this level of suffering normal? He rarely complains and it is difficult to watch him suffer. If there is something I can do to help, please give me suggestions. I appreciate this site and all the information that has guided us this far!
SSC BOT stageIV HPV+ no surgery on tumor on the right side of his neck
Comments
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Sounds very much like me at
Sounds very much like me at one week post. In my experience it does get better from here on out. My wife fed me lots of home made chicken soup with an egg mixed in. We also added in benecals so a cup of soup broth was 400 calories. Don't strain off the fat from the chicken. Much, much better than store bought. I also resisted milk because I thought it would coat. I eventually learned it wasn't the milk but the corn syrup in the ensure that was coating. Now milk is my main beverage.
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Thank you
AnotherSurvivor, Thanks so much! I needed to hear that! Do you recall how soon you felt like having chicken broth? My husband has had so much nausea that he is not remotely interested in food. I'm hopeful that once we get through the 3 weeks post treatment we will begin to see improvements.
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Oh no! Sorry to hear aboutchristine2080 said:Thank you
AnotherSurvivor, Thanks so much! I needed to hear that! Do you recall how soon you felt like having chicken broth? My husband has had so much nausea that he is not remotely interested in food. I'm hopeful that once we get through the 3 weeks post treatment we will begin to see improvements.
Oh no! Sorry to hear about your husband's pain, etc. This has got to be the world' most brutal treatment! On the upside, at least he is finished with the treatment portion. His body will start to heal soon! Does he have Zofran for the nausea? If not, I highly highly recommend him getting some. It is a prescription. Instant relief for Brad (and myself when I was pregnant years ago). Brad felt the worst on the days where he ate the least. Calories are so important. Any chance you could (sneakily...maybe?) mix a benecalorie into the Ensure drink? That would add another 330 calories? I swear that stuff and the added calories from it (I added at least 2..sometimes 3 of those a day) got Brad through this.
Hang in there!
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Hi Christine, I finishedchristine2080 said:Benecalorie
ByeByeCancer, I really want to try Benecalorie, but there is no sneaking anything past my husband. Does it have a taste or add a chalky texture? We see one of his doctors on Tuesday so I will request Zofran. We're on his second refill of Prochlorperazine & it doesn't seem to be doing the trick. I agree with you that not eating seems to make everything worse- recovery & ability to heal.
Hi Christine, I finished treatment 2 weeks ago. It's brutal and I felt much like your husband. My throat is just really healing now and I have been able to cut back the narcotics this week. He is lucky if he can swallow soup. I just started being able to swallow again this week, started c water, now Ensure. Taste is coming back. Energy is a bit better, too. Fluids are so important as many have posted. Keep giving your husband good supportive care!
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The benecalorie seems to add
The benecalorie seems to add a tiny bit of a sweet taste? It isn't chalky. I think it could mix up pretty well in an Ensure. I did that for Brad using a shaker cup. I wish I could add a video to this and I'd show you what it looks like. Oh, I found a Youtube video of someone using Benecalorie in a smoothie. She is long-winded lol, but shows the benecalorie around 4:15 in her video. Kind of gives you an idea of what its like.
https://youtu.be/S_jSSBg-Z8o I know everyone is different and will have different successes with different things, but this was (and still is) a lifesaver for us.
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I found..
That the radiation nurse (Rad Onc assistant) was the best for the neck. I went to her in tears, because I woke up with bad bad sores, that were weeping, and had dried all crusty in my hair, and attached to my nightdress. She took me back to a treatment room and cleaned my neck with a medical cleanser (so soft and soothing) spread Miaderm (made for radiated skin) acoss the burns with tongue depressers, then applied a padded dressing cut to wierd and wonderful shapes, because lets face it, our burns are wierd shapes.. topped off with a tubular dressing. That was done every night for 2 weeks, and after you couldnt tell that I had any burns at all.
I also didnt eat much. Ensure is disgusting to me. Boost strawberry much better. I found my sense of smell much multiplied, so I could smell every chemical. Chocolate smells gross - Vanilla.. I tried the carnation instant breakfast add, with boost and ice cream. It was ok, but way too much to drink as my stomache felt like it had shrunk to the size of a grape. Now 6 months post treatment, it feels thesize of a small orange - on a good day.
I know you all love your other half so much, and hate what they are going thru, - but its not one size fits all, just ask what he fancies.. getting him a small bowl of full fat ice cream is caloeies - just remember, read the labels, no citrus, no ascorbic or acetic acid as preservative, It HURTS!
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could be the worst week
Christine,
Normal he is, better he will be.
Neck burn for me was my absolute worst pain, but the Silver Sulfadiazine Cream did the trick.
While I did have a PEG, I still drank one meal a day and was mainly on smoothies at 2 weeks post when I had the PEG popped. I never argued with the fact I had to consume (somehow) 3k calories a day, or at least try. While I was drinking doctored up smoothies, I was always trying everything.
I had myself jazzed up to drink lots of water and eat or drink as many calories that I could each day. I lost 45 lbs. and did not get back to truly normal eating for 7 months. Being hydrated and nourished will pay huge dividends.
It is a head game perpetrated on us by our own minds. He could get better fast, and return to normal, but it is likely it will take a little longer.
Drinking one Ensure a day is not sufficient. The mere fact that he is drinking only one is equivalent to complaining. He needs to stay actively involved to get over these hurdles. It will get better soon.
Best of luck.
Matt
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I'm two months out of
I'm two months out of treatment and can't agree more with those who keep pushing for your husband to eat and drink more.
My doctors could tell on sight if I had been eating/drinking. As much as I hated it, the more nourishment I took in, the better I always felt. One day of not eating properly could make me sick for two days following.
I used an anti-nausea cream on my wrists and it really did the trick - never got sick once.
I went with the Boost Very High Calorie. It only comes in vanilla (which doesn't taste very good), but it's 530 calories in only 8 ounces! I could literally 'eat' a meal in just 8 swallows.
I would do that 3-4 times a day and then drink Premiere Proteins in between. They have fewer calories, more protein and come in really good flavors (like banana and caramel the best).0 -
Benecalorie
ByeByeCancer, I really want to try Benecalorie, but there is no sneaking anything past my husband. Does it have a taste or add a chalky texture? We see one of his doctors on Tuesday so I will request Zofran. We're on his second refill of Prochlorperazine & it doesn't seem to be doing the trick. I agree with you that not eating seems to make everything worse- recovery & ability to heal.
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CurlynCurlyn said:Hi Christine, I finished
Hi Christine, I finished treatment 2 weeks ago. It's brutal and I felt much like your husband. My throat is just really healing now and I have been able to cut back the narcotics this week. He is lucky if he can swallow soup. I just started being able to swallow again this week, started c water, now Ensure. Taste is coming back. Energy is a bit better, too. Fluids are so important as many have posted. Keep giving your husband good supportive care!
Thank you! My main concern is that I'm not doing something I could be doing to ease his pain. He is able to swallow and as far as I can tell, his daily intake is one chocolate Ensure, 2-3 cups of water, 1/2 - 1 cup of aloe Vera juice and his nausea pills. He has chosen not to take narcotics for his pain. I know he's trying to do this without a food peg if possible. I have scheduled weekly visits with his doctor and weekly/biweekly fluid infusions.
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Benecalorie reviewsByeByeCancer said:The benecalorie seems to add
The benecalorie seems to add a tiny bit of a sweet taste? It isn't chalky. I think it could mix up pretty well in an Ensure. I did that for Brad using a shaker cup. I wish I could add a video to this and I'd show you what it looks like. Oh, I found a Youtube video of someone using Benecalorie in a smoothie. She is long-winded lol, but shows the benecalorie around 4:15 in her video. Kind of gives you an idea of what its like.
https://youtu.be/S_jSSBg-Z8o I know everyone is different and will have different successes with different things, but this was (and still is) a lifesaver for us.
ByeByeCancer, thank you! After I posted my question to you I went to Amazon to order Benecalorie, but went to the reviews first and remembered why I haven't ordered it yet. There are great reviews, but also bad reviews saying it is gritty in texture and chalky. I have not been able to slide anything past the hubs in a drink. Texture seems to bother him more now than it ever did. I would love to order it and try it, but early on during treatment he requested a smoothie with an awful combination of things and I complied against my better judgement. It was nasty and turned him against smoothies and anything added in. I guess I feel like he wouldn't give Benecalorie half a chance and I feel like the mother of a child who refuses to eat broccoli. He would know if I slipped it into his Ensure because the seal would be broken.
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Suzy, thank you! My husbandSuzJ said:I found..
That the radiation nurse (Rad Onc assistant) was the best for the neck. I went to her in tears, because I woke up with bad bad sores, that were weeping, and had dried all crusty in my hair, and attached to my nightdress. She took me back to a treatment room and cleaned my neck with a medical cleanser (so soft and soothing) spread Miaderm (made for radiated skin) acoss the burns with tongue depressers, then applied a padded dressing cut to wierd and wonderful shapes, because lets face it, our burns are wierd shapes.. topped off with a tubular dressing. That was done every night for 2 weeks, and after you couldnt tell that I had any burns at all.
I also didnt eat much. Ensure is disgusting to me. Boost strawberry much better. I found my sense of smell much multiplied, so I could smell every chemical. Chocolate smells gross - Vanilla.. I tried the carnation instant breakfast add, with boost and ice cream. It was ok, but way too much to drink as my stomache felt like it had shrunk to the size of a grape. Now 6 months post treatment, it feels thesize of a small orange - on a good day.
I know you all love your other half so much, and hate what they are going thru, - but its not one size fits all, just ask what he fancies.. getting him a small bowl of full fat ice cream is caloeies - just remember, read the labels, no citrus, no ascorbic or acetic acid as preservative, It HURTS!
Suzy, thank you! My husband says everything is repulsive to him- especially when I try to suggest foods to him. The last thing he actually ate was almost two weeks ago. I was craving cauliflower and had roasted a small head of it in the oven for dinner. I ate almost the entire thing, leaving very little. He saw the leftovers in the kitchen when he went in and ate it. He said he would eat that again if I didn't roast it as much because he thought it tasted a little bitter. He ate maybe 2 tablespoons of that. Too bad it doesn't pack the caloric punch he needs. He refuses ice cream, milk- there is nothing he fancies now, even the cauliflower. I'm at a loss for giving him the nutrition his body needs.
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Matt, I couldn't agree withCivilMatt said:could be the worst week
Christine,
Normal he is, better he will be.
Neck burn for me was my absolute worst pain, but the Silver Sulfadiazine Cream did the trick.
While I did have a PEG, I still drank one meal a day and was mainly on smoothies at 2 weeks post when I had the PEG popped. I never argued with the fact I had to consume (somehow) 3k calories a day, or at least try. While I was drinking doctored up smoothies, I was always trying everything.
I had myself jazzed up to drink lots of water and eat or drink as many calories that I could each day. I lost 45 lbs. and did not get back to truly normal eating for 7 months. Being hydrated and nourished will pay huge dividends.
It is a head game perpetrated on us by our own minds. He could get better fast, and return to normal, but it is likely it will take a little longer.
Drinking one Ensure a day is not sufficient. The mere fact that he is drinking only one is equivalent to complaining. He needs to stay actively involved to get over these hurdles. It will get better soon.
Best of luck.
Matt
Matt, I couldn't agree with you more. The silver sulfadiazine cream seems to be helping when he allows me to put it on (pretty much every other day). He says he doesn't help with the pain though.
I feel like he could be putting more effort into getting those Ensures down, but just can't battle him every day over food. We see the doctor on Tuesday (I set this up last week) and I'm fairly certain this will be the food peg decision day. He says he's not opposed to it although I think he is. I think he thinks he's fine without it, drinking only one Ensure a day. It's difficult to watch an intelligent man make such bad decisions about his health after all he's been through. It is a mind game- drinking those nasty Ensures or whatever it takes to get the calories his body needs. If he can't do that, there is another way to get those calories in and we will soon see what he chooses. Is it normal recovery to drink one Ensure a day and sleep all day? I don't want to give him a hard time if this is maximum effort and normal behavior.
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I'm a little over a week from
I'm a little over a week from my last treatment and the scopolamine patch did wonders for my nausea but don't need it now as my appetite is great. Mouth and throat are still pretty sore but getting down 2 liquid hopes and 3-4 ensures a day with pretty much no trouble. Weight has stabilised but barely gaining any and until I do, they probably won't agree to take the feeding tube out.
I guess I got lucky as far as the outside of my neck is concerned. The skin looks normal but the muscle tissue and around my jaw line is indented so I'm sure that will never come back.
I think the hardest thing is going to be weaning off the pain meds after being on them for so long.
I wish everybody in this boat continuing sucess of getting thru this difficult period until we feel like we are normal again and can eat!
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Eating issues
My husband sounds very like yours. Foods and medications I thought made sense were of no value to him. He would not eat. The texture, the smell, and the taste, he wanted nothing to do with it, even though he knew in his brain he needed to eat and drink to survive. He continued to struggle with nausea for awhile as well. His healthcare team was great. They really monitored his weight loss and eating habits. His recovery took awhile. He was laid out in bed for 7 weeks post treatment. He lost 40 pounds. I would say 25 of those pounds probably needed to go anyway. He needed the feeding tube, and during the worst of it, he ended up on TPN, intravenous nutrition. He would not have survived without the TPN. He was weaned off the TPN once he reached 2000 calories using the feeding tube. He is 19 weeks post treatment and still using the feeding tube. He only eats about one small meal a day and that probably has about 200 calories. Taste is starting to come back for him.
What your husband is going through is normal. Hopefully, his eating journey will be more successful than ours. I am waiting on our first order of Benecalorie. I, too, am hoping that he will take more calories by mouth, so he can wean off the feeding tube. I am not sure if he will like the taste and texture, but I thought I would give it a try.
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Food Issues
The food aversions your husband describes are real. It is beyond frustrating as the caregiver. This does not happen to everyone but he is not just being difficult. I have learned more about all the factors that go into appetite and satiety than I ever wanted to know. I want to encourage you that seven months post-treatment my husband can and wants to eat most things. Some meats and dry carbohydrates can be a challenge and he still eats a lot less than he used to eat but he enjoys many foods again. I am thrilled to be able to stop counting all his calories every day because he is maintaining his weight. He is down over 40lbs. since treatment began and honestly I can't see him ever gaining weight again as he has lost a lot of muscle mass. I am just thrilled that he can maintain and that he is monitoring that now instread of me. There can be serious issues if nutrition and hydration are not maintained during treatment. You just need to be sure that the treatment team has an accurate picture of his intake. My husband absolutely hated the PEG in the beginning but he came to tell people that he grew to see it as his friend and not his enemy. In retrospect he says, he would not have made it through treament without it. Everyone responds to treatment differently and he may or may not end up needing a PEG. If he does, my husband lived on the VHC Boost from Amazon. It kept him alive. I want to prepare you though that even with a PEG the food aversions and other side effects of treatment made meeting the intake goals for my husband still a challenge. As a caregiver, the way your husband is responding is really close to how things went here. Hang in there. I can only tell you that for my husband, although it was a very bumpy ride but he made it through and he is doing better than I ever hoped he would. No, things are not the same for him but life is really good.
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SoonerMom, Thanks! Thingssoonermom said:Food Issues
The food aversions your husband describes are real. It is beyond frustrating as the caregiver. This does not happen to everyone but he is not just being difficult. I have learned more about all the factors that go into appetite and satiety than I ever wanted to know. I want to encourage you that seven months post-treatment my husband can and wants to eat most things. Some meats and dry carbohydrates can be a challenge and he still eats a lot less than he used to eat but he enjoys many foods again. I am thrilled to be able to stop counting all his calories every day because he is maintaining his weight. He is down over 40lbs. since treatment began and honestly I can't see him ever gaining weight again as he has lost a lot of muscle mass. I am just thrilled that he can maintain and that he is monitoring that now instread of me. There can be serious issues if nutrition and hydration are not maintained during treatment. You just need to be sure that the treatment team has an accurate picture of his intake. My husband absolutely hated the PEG in the beginning but he came to tell people that he grew to see it as his friend and not his enemy. In retrospect he says, he would not have made it through treament without it. Everyone responds to treatment differently and he may or may not end up needing a PEG. If he does, my husband lived on the VHC Boost from Amazon. It kept him alive. I want to prepare you though that even with a PEG the food aversions and other side effects of treatment made meeting the intake goals for my husband still a challenge. As a caregiver, the way your husband is responding is really close to how things went here. Hang in there. I can only tell you that for my husband, although it was a very bumpy ride but he made it through and he is doing better than I ever hoped he would. No, things are not the same for him but life is really good.
SoonerMom, Thanks! Things have definitely improved around here! I appreciate all of the encouragement and suggestions I have gotten here. I got a prescription for Zofran today for the nausea although his nausea has not been so bad lately. On Sunday he suddenly started drinking 2 Ensures a day & promises me to work up to 3 or 4. I really think his nausea was keeping him from getting proper nutrition. He’s drinking at least 1 liter of water daily. One sure sign that he’s feeling better is that he’s more interested in food. He’s planning the foods he wants to eat once he can taste anything!
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what exsactly do you mean notsoonermom said:Food Issues
The food aversions your husband describes are real. It is beyond frustrating as the caregiver. This does not happen to everyone but he is not just being difficult. I have learned more about all the factors that go into appetite and satiety than I ever wanted to know. I want to encourage you that seven months post-treatment my husband can and wants to eat most things. Some meats and dry carbohydrates can be a challenge and he still eats a lot less than he used to eat but he enjoys many foods again. I am thrilled to be able to stop counting all his calories every day because he is maintaining his weight. He is down over 40lbs. since treatment began and honestly I can't see him ever gaining weight again as he has lost a lot of muscle mass. I am just thrilled that he can maintain and that he is monitoring that now instread of me. There can be serious issues if nutrition and hydration are not maintained during treatment. You just need to be sure that the treatment team has an accurate picture of his intake. My husband absolutely hated the PEG in the beginning but he came to tell people that he grew to see it as his friend and not his enemy. In retrospect he says, he would not have made it through treament without it. Everyone responds to treatment differently and he may or may not end up needing a PEG. If he does, my husband lived on the VHC Boost from Amazon. It kept him alive. I want to prepare you though that even with a PEG the food aversions and other side effects of treatment made meeting the intake goals for my husband still a challenge. As a caregiver, the way your husband is responding is really close to how things went here. Hang in there. I can only tell you that for my husband, although it was a very bumpy ride but he made it through and he is doing better than I ever hoped he would. No, things are not the same for him but life is really good.
what exsactly do you mean not the same. i am 3 wks out.when was he able to eat? have not had food down my throat in 2 months. i am worried....
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