Post tx not eating/PEG

Loves2read

Today is 7 days post treatment for my DH. His last treatment was 2/16. At his checkup on 2/20, he was down 4.5 lbs. Over the weekend, he has not been using his PEG. I think over the last 8 days or so he might have had total 12 cans of isosource. The most in one  day has been 3. Each one is 375 cal. Home health came today to set him up with 1 liter fluids each day this week. I am still concerned about nutrition.  He started at 201 and the nutritionist said to get 6 in a day. He's down to <176.

At what point does it become clear to doctors/nurses that he is not getting enough through his PEG by doing it himself? 

lornal

nutrition

When I went through my treatment, I did not have a PEG, nor did I eat or drink. Most days I had to go to the infusion center just for fluids.

I didn't start improving until I visited my new General Practicioner.  One word to me, and I started crying.  I was so "depressed" that I didn't know I was depressed.  Once I started on medication I started improving and started eating and drinking and healing.

I don't know if that comes into play or not, but worth talking to the doctor about.  I had lost 90 pounds in 3-4 months.

Lorna 2007 & 2014

phrannie51

In reality....

a 25 lb weight loss at the end of treatment is pretty darn good!  There are people on  here who have lost 3 or 4 times that....I lost 17 or 18, which was not too bad, either (I started treatment at 97 lbs)....If it's trouble swallowing that is keeping him from taking in more of the drinks....Boost VHC packs 530 calories in an 8 oz carton....three of those in a day would pack in nearly 1600 calories rather than 1100.  If he's using a tube, then remembering that for now eating isn't for pleasure, it's for survival....we don't live to eat, we eat to live....it's a job rather than something something fun.

The not eating is worrisome, expecially for caretakers...for us who are actually going through the treatment...getting something in everyday is a miracle . 

p

Loves2read

lornal said:

nutrition

When I went through my treatment, I did not have a PEG, nor did I eat or drink. Most days I had to go to the infusion center just for fluids.

I didn't start improving until I visited my new General Practicioner.  One word to me, and I started crying.  I was so "depressed" that I didn't know I was depressed.  Once I started on medication I started improving and started eating and drinking and healing.

I don't know if that comes into play or not, but worth talking to the doctor about.  I had lost 90 pounds in 3-4 months.

Lorna 2007 & 2014

The thought has crossed my

The thought has crossed my mind. I think it is early yet, but I will remember your advice to talk with the doctor at our next follow up in a week or two. Thanks!

Loves2read

phrannie51 said:

In reality....

a 25 lb weight loss at the end of treatment is pretty darn good!  There are people on  here who have lost 3 or 4 times that....I lost 17 or 18, which was not too bad, either (I started treatment at 97 lbs)....If it's trouble swallowing that is keeping him from taking in more of the drinks....Boost VHC packs 530 calories in an 8 oz carton....three of those in a day would pack in nearly 1600 calories rather than 1100.  If he's using a tube, then remembering that for now eating isn't for pleasure, it's for survival....we don't live to eat, we eat to live....it's a job rather than something something fun.

The not eating is worrisome, expecially for caretakers...for us who are actually going through the treatment...getting something in everyday is a miracle . 

p

Phrannie, thanks for the

Phrannie, thanks for the reminder that even a little bit is an accomplishment. It is hard to understand from my perspective. when the nurse was here today he told her he would get about 5 cans in a day. So I wonder if he really doesn't know How little he's getting? 

Ladylacy

Tube Feedings

I found that if I set out the number of cans my husband is using per day than it is easier for both of us to keep up with what he is taking.  I put the cans out on the kitchen table each morning.  Now my husband's story is different than yours.  My husband is on hospice and loosing his battle and only takes in 3 cans a day of Nutren 1.5 and has lost too much weight. (He is 6'4" and only weighs, well the last time he would weigh 115 lbs) But there is nothing we can do about it.  Too much intake and he stays sick to his stomach all day and has to take another medication for that.

Our hospice nurses keeping asking him about depression and wanting to put him on more medication.  He is on Ativan for anxiety.  So I would definitely talk to the doctor about depression and now rather than later.  Men generally won't admit they are depressed.   Radiation is a treatment that keeps on giving and giving and giving.  For us it was worse and we didn't know until they did surgery that the radiation had closed off the back of his throat making eating impossible.

Wishing you both peace and comfort and take care of yourself too.  Caregiving is hard and stressful.

Sharon

hwt

Ladylacy said:

Tube Feedings

I found that if I set out the number of cans my husband is using per day than it is easier for both of us to keep up with what he is taking.  I put the cans out on the kitchen table each morning.  Now my husband's story is different than yours.  My husband is on hospice and loosing his battle and only takes in 3 cans a day of Nutren 1.5 and has lost too much weight. (He is 6'4" and only weighs, well the last time he would weigh 115 lbs) But there is nothing we can do about it.  Too much intake and he stays sick to his stomach all day and has to take another medication for that.

Our hospice nurses keeping asking him about depression and wanting to put him on more medication.  He is on Ativan for anxiety.  So I would definitely talk to the doctor about depression and now rather than later.  Men generally won't admit they are depressed.   Radiation is a treatment that keeps on giving and giving and giving.  For us it was worse and we didn't know until they did surgery that the radiation had closed off the back of his throat making eating impossible.

Wishing you both peace and comfort and take care of yourself too.  Caregiving is hard and stressful.

Sharon

Weight loss

I do Ensure Plus which is 350 cal a can. With 5 cans I maintain and can gain with 6 cans.

Hondo

Ladylacy said:

Tube Feedings

I found that if I set out the number of cans my husband is using per day than it is easier for both of us to keep up with what he is taking.  I put the cans out on the kitchen table each morning.  Now my husband's story is different than yours.  My husband is on hospice and loosing his battle and only takes in 3 cans a day of Nutren 1.5 and has lost too much weight. (He is 6'4" and only weighs, well the last time he would weigh 115 lbs) But there is nothing we can do about it.  Too much intake and he stays sick to his stomach all day and has to take another medication for that.

Our hospice nurses keeping asking him about depression and wanting to put him on more medication.  He is on Ativan for anxiety.  So I would definitely talk to the doctor about depression and now rather than later.  Men generally won't admit they are depressed.   Radiation is a treatment that keeps on giving and giving and giving.  For us it was worse and we didn't know until they did surgery that the radiation had closed off the back of his throat making eating impossible.

Wishing you both peace and comfort and take care of yourself too.  Caregiving is hard and stressful.

Sharon

230 to 142

 

I too went from 230lbs down to 142lbs and it has been that way for the last 3 years. While going through treatment none of my doctors said anything about a PEG tube or were they concerned about my weight, not sure why. It was a very rough ride back then just wish I knew about CSN back then.

 

    

Tim Hondo

robswife87

He is feeling his worst right now

This is probably the worst he has felt during this whole time. They are not hungry, not thirsty, they hurt and just want to curl up. He will probably be this way about another week. You have to take charge and just hook him up to the food. Slow flow. If it takes an hour for a can so be it.

I told my husband before any treatment started that we would fight over the things that needed to be done. And we did. I had to be forceful with him for his own good. He now thanks me for being there to take care of business he couldn't or wasn't willing to do.

This will pass. Fight him for his own good. He would do the same if roles were reversed. He will thank you in about 3 months. LOL

Sandy

Sailor123

Hi Lovestoread:
I wasn't

Hi Lovestoread:

I wasn't clear about whether he was not using the tube because he just doesn't want to, or because putting food in it is making him sick.  I found the tube to be an amazing aid as I didn't feel like eating or drinking anything but always got excellent nutrition through the tube.  I blended up all sorts of vegetables and fruits and put them in it.  I would pay close attention to this as it is so much harder to recover when you get really weak and lose a lot of muscle mass.  

I hope he gets better soon.

Shirley

Loves2read

Sailor123 said:

Hi Lovestoread:
I wasn't

Hi Lovestoread:

I wasn't clear about whether he was not using the tube because he just doesn't want to, or because putting food in it is making him sick.  I found the tube to be an amazing aid as I didn't feel like eating or drinking anything but always got excellent nutrition through the tube.  I blended up all sorts of vegetables and fruits and put them in it.  I would pay close attention to this as it is so much harder to recover when you get really weak and lose a lot of muscle mass.  

I hope he gets better soon.

Shirley

Back to work

So I wrote the original post on Monday this week, and he got IV fluids through his power port Monday afternoon With the home health nurse. He had 2 cans of food late in the day Monday, and reported a pain/fatigue level of 7 even with the new 75mcg fentanyl patch. I think the pain/fatigue keeps him from being more consistent with the tube feelings.

Yesterday, he was dressed, and out of the house at 8am to go to his office to get some work done in preparation for a half-hour meeting today. Well, he was gone till 11:30pm. (Desk job- shares office space with only a few people). I wasn't able to give him fluids as directed since he got home so late. Nor do I think he did more than 2-3 cans again.  he has not said whether the tube feelings make him feel sick to his stomach. He won't answer my questions about that. its like getting a teen to clean a bedroom...  I am most worried about his long term recovery knowing that his loss of muscle will affect him in other ways if he's not intentional about getting healthy. 

Thankfully he has a ride (2 hrs away) to his meeting today. I am wavering between emotions of gratefulness that he is willing to work and support us, and incredulousness that he doesn't fall flat on his face! It's a roller coaster! We are only 10 days out from last radiation.

-Elizabeth 

 

Loves2read

robswife87 said:

He is feeling his worst right now

This is probably the worst he has felt during this whole time. They are not hungry, not thirsty, they hurt and just want to curl up. He will probably be this way about another week. You have to take charge and just hook him up to the food. Slow flow. If it takes an hour for a can so be it.

I told my husband before any treatment started that we would fight over the things that needed to be done. And we did. I had to be forceful with him for his own good. He now thanks me for being there to take care of business he couldn't or wasn't willing to do.

This will pass. Fight him for his own good. He would do the same if roles were reversed. He will thank you in about 3 months. LOL

Sandy

Yes- it probably is the worst

Yes- it probably is the worst he's felt, but if he's not home for me to help and encourage him to do the feedings, then there is not much else I can do. It's frustrating! He thanks me- but that doesn't make it any easier to help.  I keep in mind your reminder that things will/should be much different in a few months. Thanks for your response and advice!

phrannie51

Loves2read said:

Back to work

So I wrote the original post on Monday this week, and he got IV fluids through his power port Monday afternoon With the home health nurse. He had 2 cans of food late in the day Monday, and reported a pain/fatigue level of 7 even with the new 75mcg fentanyl patch. I think the pain/fatigue keeps him from being more consistent with the tube feelings.

Yesterday, he was dressed, and out of the house at 8am to go to his office to get some work done in preparation for a half-hour meeting today. Well, he was gone till 11:30pm. (Desk job- shares office space with only a few people). I wasn't able to give him fluids as directed since he got home so late. Nor do I think he did more than 2-3 cans again.  he has not said whether the tube feelings make him feel sick to his stomach. He won't answer my questions about that. its like getting a teen to clean a bedroom...  I am most worried about his long term recovery knowing that his loss of muscle will affect him in other ways if he's not intentional about getting healthy. 

Thankfully he has a ride (2 hrs away) to his meeting today. I am wavering between emotions of gratefulness that he is willing to work and support us, and incredulousness that he doesn't fall flat on his face! It's a roller coaster! We are only 10 days out from last radiation.

-Elizabeth 

 

No matter how much he's taking in

nutritionally.....he HAS to keep the fluid up....lots of water, or milk even (two birds with one stone ).....the absolute WORST I ever felt during treatment was being dehydrated and not realizing that was what was making me feel so so awful.  I felt everything crappy, but thirsty....once they infused me....I came to life like a dried out plant in the kitchen...LOL.  Water, water, water....no matter what.

p

wmc

Keep taking in fluids

He has to keep hydrated.......... Water, chicken broth, milkshakes, anything ever popsicles. Needs food too but do not get dehydrated. 

Bill