Caregiver-question about husband 8 weeks post radiation for tongue cancer

rsp

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.

georgiasurfer

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. 

rsp

peg tube

Thank you for your comment.  Did you husband get his feeding tube before or after his procedure?

CivilMatt

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

rsp

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

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?

georgiasurfer

rsp said:

peg tube

Thank you for your comment.  Did you husband get his feeding tube before or after his procedure?

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. 

georgiasurfer

rsp 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?

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. 

rsp

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. 

Thanks!

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!

PACE

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. 

rsp

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. 

Thanks!

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!

CivilMatt

rsp 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?

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

rsp

CivilMatt 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

Thanks

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!

georgiasurfer

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. 

bugsyboy

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

rsp

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

Thanks!

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!

rsp

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. 

I'm convinced!

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.