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#194067 - 03/28/17 01:28 AM When they won't eat?  
Joined: Feb 2017
Posts: 66
sooner Offline
Supporting Member (50+ posts)
sooner  Offline
Supporting Member (50+ posts)

Joined: Feb 2017
Posts: 66
Today is Monday. My husband has lost 9 more lbs since we were here on Friday. As a caregiver what do you do when you encourage them to eat and drink and they just can't/won't? He has a PEG tube.


Wife to DP. DX SCC BOT 1/31/17
First treatment 2/27/2017 Cisplatin 3 times and IMRT
Last treatment 4/18/2017
Clear PET 7/13/2017
PEG removed 8/4/2017
#194070 - 03/28/17 02:00 AM Re: When they won't eat? [Re: sooner]  
Joined: Jun 2007
Posts: 9,715
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,715
PA
Ive sent you a private message with a plan to get your husband back on board. Click on the tiny flashing envelope next to the My Stuff tab to get your messages. My suggestion has been tried and worked successfully here for many caregivers so I think it may help your husband.

Losing weight is a sure sign his intake is not what it needs to be. Every single day he must take in at least 2500 calories and 48-64 oz of water. With losing so much weight in such a short amount of time, his intake could even be higher like 300 or 3500 calories daily. Im certain if he could boost his intake for even 2 or 3 days he would feel immensely better than he currently does. If nausea is a problem, he should take anti-nausea meds every 4 hours around the clock or so as directed. If he skips a dose he can easily not be able to get ahead of the nausea for days. No matter what the reason is behind your husbands avoiding eating and drinking he must change this or he will only suffer more than he has to.

Print out a bunch of posts that you think would help your husband to pull himself out of this cycle. Dont say a word to him but it works best if he sees you studying the posts. Then leave the printed posts somewhere he is bound to find them. Most people will be curious enough about what you were reading so intently that they cant help themselves, they will pick up the stack of posts and read them. Hopefully this is enough motivation to turn him around and get him back on track.

I cant imagine how difficult this is for you being your husbands caregiver. To watch someone you love in such a low point of their lives must be heartbreaking. Watching him suffer and feeling so helpless must be horrible. If you have any friends or relatives who have offered to help you it would be a great idea to get someone to help with transportation for your husbands treatments. It would do you both good and would give you a break, even for a day it would be a big help.

Im rooting for you both. Good luck!!!



PS.... Many patients find it helpful to talk to others who have been thru similar situations. I would be happy to speak to your husband if he would agree to talk to me. Ive talked to hundreds of patients and caregivers over the years. I went thru rads almost 10 years ago and I still remember it like it was yesterday. Let me know if he will talk to me and I'll PM you my number.


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
#194072 - 03/28/17 01:20 PM Re: When they won't eat? [Re: sooner]  
Joined: Oct 2008
Posts: 217
travelottie Offline
Gold Member (200+ posts)
travelottie  Offline
Gold Member (200+ posts)

Joined: Oct 2008
Posts: 217
NY state
Is there a problem with using the PEG that I missed? Why isn't he getting enough calories via PEG feedings?

Sometimes patients undergoing tx are unable to eat/drink for a period of time for various reasons - it is not always a lack of will or emotional problems, sometimes medical reasons make it impossible to swallow or tolerate food & liquids. That's why a PEG is inserted. If nausea with PEG feeding is the issue that needs to be handled with anti-nausea meds which Christine has already outlined. Is a nutritionist involved in his care?


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
#194073 - 03/28/17 03:50 PM Re: When they won't eat? [Re: sooner]  
Joined: Sep 2016
Posts: 104
bjmpittsburgh Offline
Senior Member (100+ posts)
bjmpittsburgh  Offline
Senior Member (100+ posts)

Joined: Sep 2016
Posts: 104
Sooner -

Has he given you a reason why he's not interested in eating? Nausea / pain?

How is he dealing with his diagnosis emotionally?

You need to talk with his doctors and get him onboard with his need to improve his situation. Weight loss during treatment is tough to stop, but intake of calories and water are incredibly important to his ability to get through the treatments.

Get him some help, now. If its physical his doctors have options / meds. If its emotional, get him to the right place. As soon as possible.

Use of the PEG is not defeat. Its a viable option for intake when the mouth and throat are no longer cooperating.

Good Luck


1997 SCC Tumor on tongue - Partial Glossectomy
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Glossectomy
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-glossectomy
Free Flap reconstruction from thigh
PEG Tube inserted
6 weeks radiation
Trisimus
Pump Feed
Permanent Issues with speech and swallowing

#194074 - 03/28/17 05:16 PM Re: When they won't eat? [Re: sooner]  
Joined: Jun 2007
Posts: 9,715
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,715
PA
What worries me the most is that every day your husband doesnt take in at least 2500 calories and 48-64 oz of water is one more day where his body is not getting what it needs. Each day of doing this means he will begin to feel worse and worse both physically and mentally.

Be prepared for his nurses to start watching him closer. Losing 9 pounds over a couple days time is a huge red flag that they watch for. I had to get weighed every single day when I started going downhill. My nurse made me bring my formula along and we would have our "lunch" together so she could make certain I was really doing feedings. I can only hope your husbands team is as on the ball and pays attention to patients with big weight losses.

The feeding tube is something all patients hate. Its very difficult to mentally handle that you must depend on a plastic tube sticking out of you to get your sustenance. I cant think of any patients who enjoyed having their tube. But its a necessary tool and needs to be used. I hope your husband can quickly turn his lack of eating and drinking around and start hitting the daily minimums.... every single day! I guarantee if he took in 3000 calories and 64 oz of water every day for 3 days he would feel so much better. Ask him just to give it a try, it sure cant hurt.


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
#194111 - 04/08/17 07:10 PM Re: When they won't eat? [Re: ChristineB]  
Joined: Apr 2017
Posts: 1
Jbird Offline
Member
Jbird  Offline
Member

Joined: Apr 2017
Posts: 1
My brother just passed January 15, 2017 diagnosed June 2016 only 41 years old. I know it can be hard everyone eating . BBQ etc. Support system is great. I would do his meals as our meals too. I hope my words and experience saves. Ty


My brother died from oral cancer I was with him through it all. I want to get his story out,so hopefully it saves a life.

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