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CherylP Offline OP
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I need advice on helping my husband gain some weight on the feeding tube. He is 6 feet tall and been on the tube for 1 year and still at 130 lbs. Normal weight was 180. It has been a rough year. If I had it to do over we would not have gone this route. He was aspirating so much when eating we were advised to get the tube. Had 1 dilation then but no one stressed how important the exercises were to its success. After getting the tube he went downhill. It pretty much made him constantly sick and weak. I had to take a permanent leave from my job to give him constant care. In April we traveled to North Carolina from PA to see a doctor there doing new procedures with the scar tissue. He ended up in ICU at Wake Forest with sepsis and aspiration pneumonia again. I almost lost him that time and yes I am angry that no one told us you get more aspiration pneumonia with the tube. He got the TREAD treatment and changed his tube to a mic-key button. (The mic-key button is definitely the way to go!!! No tube hanging and I can change it myself) Found his stricture is all near the voice box. He actually puts slits in the scar tissue and injects with steroids. Went back 1 month later and got another dilation. Doctor was very happy with his progress and wanted him to eat soft foods. Was supposed to go back in September for another but got an abscessed tooth and found he was in danger of losing his jaw. Had 30 HBO dives and all his teeth out. I really thought this was the miracle we were praying for and he could get some semblance of a normal life back. He is on Boost - was giving 9 cans a day back in April and he did gain then up to 145. But after he was in ICU he was down to 127 lbs. Just switched to 7 per day - 4 Boost plus and 3 regular (2040 cal per day). He's too full and bloated. All he has to do is bend over and it comes up. But he doesn't do enough to get hungry. He gets up, puts boost and meds in, goes back to bed and watches TV on his wedge, repeat. This is his whole life. He won't leave the house, won't drive, won't answer his phone when friends or family call and this is just not him. He was a go-getter and a fighter who never stopped. He never let the cancer get him down. He was a avid outdoorsman and hunter. He says he can't do anything until he gains some weight and gets more energy. I can't make him understand the more he lays around the less energy he will have. He's afraid he will get sick from someone. And with it cold out he doesn't do his daily walk. Sorry for venting but I am very frustrated. He just turned 60. He says he is sick and miserable every day. It has been 6 months since he has had pneumonia which is great and 5 months since he has had any infections. His blood pressure is now normal without meds and his oxygen is 97. He should feel great. I just don't understand why he is miserable all the time. Back to my original question, is there anything I can give him that will help with weight gain (and energy) without all the volume. I have talked with the nutritionists but they just say boost and that it takes time. Well it has been 1 year. And I don't think the drip one is an option because then he would never get out of bed. We did try Nutren 1.5 a few months ago but it just made his stomach burn so switched back to boost. And he had a kidney transplant in 1989 so he only has one. I have to watch his protein intake because of that. Any suggestions would be appreciated. I know a lot of you have been down this road too and I really admire your positive attitudes and willingness to help others.


Wife Of Ted age 59
Non-smoker,
dx 07/2007 cancer in tonsil cavity
40 rad tx Last rad 9/28/07
8 chemo weekly - Erbitux & Alimta
dx 03/2008 native kidney tumor cancer
03/2008 kidney removed,
11/2013 Esophageal Dilation
12/2013 Aspiration Pneumonia
01/2014 Aspiration Pneumonia
01/2014 - G Tube - Nothing more by mouth
05/2014 - Aspiration Pneumonia & Sepsis
05/2014 & 06/2014 - Esophageal Dilation
06/2014 - Aspiration Pneumonia
08/2014 - 30 HBO Dives
10/2014 - All teeth extracted
Joined: Oct 2012
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Hi CherylP, has your husband discussed his digestive problems with his doctor? My husband was prescribed Prevacid to help control the stomach acid. I have just had a discussion with our MO about John's lack of appetite and she said it had to do with the chemo that he was receiving. (He has just finished his last round of chemo for now). She said the best course of action is to take a break as there is no medicine for stimulating the appetite.

How much water is your husband taking with each feed? John was taking six and a half boxes of Nutren 1.5 with 240 ml of water each feed. The nutritionist said he shouldn't be taking in more water as his kidneys would be overworked.

Has your husband had a swallowing test and seen a speech and language pathologist? There are some tricks for helping him swallow better that the SLP can teach him. The consistency of what he drinks is also important. The slightly thicker (nectar consistency) liquid is easier to manage than just water.

John had his esophagus opened by an interventional radiologist using two magnets back in October. He has had three dilations since then. I was told that the best way to keep the esophagus open is to put in a stent. However, in John's case, the IR is reluctant to put in the stent as there is too much discomfort involved for the patient. The next best thing is keep the esophagus open is to ensure that its walls heal. A newly opened esophagus remains raw and, over the period of two or three weeks, its walls may stick together again. After his second dilation, we decided to try putting manuka honey in his tea to help with the healing. At his last dilation, the IR told us that the esophagus was healing cleanly and nicely so much so that John won't need another dilation for five weeks. So far his swallowing has remained good. I don't know if this is due to the honey but the progress seems to be faster than before.

I'm afraid my post is a bit all over the place, I hope what I have said is helpful in some way. If you have more questions, please feel free to pm me or post again,


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Joined: Feb 2014
Posts: 8
CherylP Offline OP
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He has been on Prilosec for years. Also takes Reglen to help aid in the digestion. He takes in about 500 mls of water daily between his meds and feeds. He has not tried to eat anything by mouth since July. He went through 8 weeks of swallowing therapy last Sept and Oct. He was seeing a SLP in Wake Forest and had several tests done. They said he needs to swallow differently due to where is scar tissue build up is. All this got put on the back burner when he needed to get the teeth out asap and he let up on his exercises. The magnets sound like a great thing. Glad they are helping him.


Wife Of Ted age 59
Non-smoker,
dx 07/2007 cancer in tonsil cavity
40 rad tx Last rad 9/28/07
8 chemo weekly - Erbitux & Alimta
dx 03/2008 native kidney tumor cancer
03/2008 kidney removed,
11/2013 Esophageal Dilation
12/2013 Aspiration Pneumonia
01/2014 Aspiration Pneumonia
01/2014 - G Tube - Nothing more by mouth
05/2014 - Aspiration Pneumonia & Sepsis
05/2014 & 06/2014 - Esophageal Dilation
06/2014 - Aspiration Pneumonia
08/2014 - 30 HBO Dives
10/2014 - All teeth extracted
Joined: Jun 2007
Posts: 10,507
Likes: 6
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Sounds to me like you should meet with a nutritionist and try a new formula. There are hundreds of different ones, many have more calories than Boost making it so much easier to get enough in every day. After battling OC, many patients will not gain weight for years even if they are taking in 4000 calories daily. Its just something odd with a different metabolism patients have after all the treatments.

Maybe try a kangaroo pump to do slow feedings overnight while the patient sleeps would help? This way he could take in 3 more cans overnight. Just be sure to have him sleep propped up on several pillows or raise the head of the bed to avoid any issues with aspiration.

Best wishes!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Feb 2014
Posts: 8
CherylP Offline OP
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Posts: 8
I have talked with 3 different nutritionists. Pre cancer weight was 210. During treatments he was down to 150. He got back up to 180 - 190 afterwards and maintained that for 5 years. He has always supplemented with Boost since the cancer. Since it agrees with him, they feel best to keep him on it. I tried the Nutren twice, both times with upset burning stomach so back to boost. Was hoping for something without volume to add for weight gain. He has a foam wedge/ramp he sleeps on and the bed is elevated. He hasn't slept on his back for over a year.


Wife Of Ted age 59
Non-smoker,
dx 07/2007 cancer in tonsil cavity
40 rad tx Last rad 9/28/07
8 chemo weekly - Erbitux & Alimta
dx 03/2008 native kidney tumor cancer
03/2008 kidney removed,
11/2013 Esophageal Dilation
12/2013 Aspiration Pneumonia
01/2014 Aspiration Pneumonia
01/2014 - G Tube - Nothing more by mouth
05/2014 - Aspiration Pneumonia & Sepsis
05/2014 & 06/2014 - Esophageal Dilation
06/2014 - Aspiration Pneumonia
08/2014 - 30 HBO Dives
10/2014 - All teeth extracted
Joined: Jan 2013
Posts: 1,291
Likes: 1
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[quote] I have talked with the nutritionists but they just say boost and that it takes time. [/quote]Overdue to see new nutritionist. He needs more calories. Fat and proteins have twice the calories than carbohydrates. As long his stomach can digest them try blending up some things with peanut butter, other nuts, any oils, etc. You can pack a lot more calories into the same volume. Get a new nutritionist and make sure they have good suggestions and alternatives for him.
Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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Are you using Boost Very High Calorie? If not try looking into it. Each 8oz has 530 calories. Its easiest to order thru the Amazon link on the right side of any forum page. Most pharmacies do not routinely stock this product but will order it if asked.




Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Feb 2014
Posts: 8
CherylP Offline OP
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Posts: 8
We tried the Boost VHC last year and it made him sick. Wish it would have worked as it does have way more calories.


Wife Of Ted age 59
Non-smoker,
dx 07/2007 cancer in tonsil cavity
40 rad tx Last rad 9/28/07
8 chemo weekly - Erbitux & Alimta
dx 03/2008 native kidney tumor cancer
03/2008 kidney removed,
11/2013 Esophageal Dilation
12/2013 Aspiration Pneumonia
01/2014 Aspiration Pneumonia
01/2014 - G Tube - Nothing more by mouth
05/2014 - Aspiration Pneumonia & Sepsis
05/2014 & 06/2014 - Esophageal Dilation
06/2014 - Aspiration Pneumonia
08/2014 - 30 HBO Dives
10/2014 - All teeth extracted
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
It is pretty thick. Most patients are able to better tolerate formula when the feeding rate is slowed down. You can also try watering it down. I had trouble using it too and after I watered it down and used an overnight feeding pump my stomach could handle that kind of formula. I used to mix 2 cans of VHC and 2 cans of the prescription formula. I was given 2-Cal that also had 530 calories per can. Hope this info will be helpful

Best wishes!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile

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