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Joined: Dec 2003
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Patient Advocate (old timer, 2000 posts)
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I was on TPN feedings for almost 4 months after treatment along with 1-3 bags of fluids per day. I was consuming over 4,000 calories a day for months with no weight gain and then the floodgates opened. I gained 11 one week and 50 in a month. If he is managed by a doctor and they are still doing labs regularly, they should guide you in the right direction. In cancer world there is one main number they look at for nutrition, albumin. My mother had normal levels at 50lbs a week before she died.

Have you considered having your husband talk to a cancer psychiatrist? They deal with so many cancer related issues that they may help him understand the importance as well as the impact on you. Best wishes.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Jul 2011
Posts: 945
"Above & Beyond" Member (500+ posts)
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My husband noted that trying to eat during and immediately after treatment was a form of operant conditioning: every time you eat it hurts and tastes bad, so you are conditioned to not want to eat in your very own psychology lab experiment. He used to joke about the test lab rats getting zapped every time they went to get a food pellet. I think that it helped him when he realized what this was part of what was going on.

I agree with David about the nasal tube - nutrition without the 'zap'. It WILL get easier for him to eat, but it will take a while.

Maria

Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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Patient Advocate (old timer, 2000 posts)
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That's conditioned food and taste aversion, similar to Pavlov's dog. They say use a strong food stimulate before treatment like candy or something just before treatment so not to remind you of the bad taste later on from the last food you ate or even smelled. It is very psychological, sometimes, even color of room, ambience, food appearance, eat food that are familiar not exotic or new. Meats, certain proteins have more taste aversion, certain carbs less. Like Ed mentioned, counseling, psychologist is used to the see reason why there may be a mental reason causing anorexia, wasting or cachexia.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Sturt1 Offline OP
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He has a peg which was placed 5/24 .doing 2 out of the 6 cans prescribed.


Colleen
Wife/advocate for husband. 52 yo nonsmoker
ISSC tonsil stage IVa. HPV + Enlarged node & tonsil,
CT 2/13
Bx lt tonsil 3/8,
PET 3/16
Tx started 4/9/2013 Cisplatin x3 and IMRT x 7 wk
Tx end 5/29
GT 5/24-7/17
Officially in Recovery Phase! : )
CT scan 8/13-NED !
CT scan 7/14-NED
5/2018- 5 year anniversary -NED
Joined: Dec 2003
Posts: 2,606
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Patient Advocate (old timer, 2000 posts)
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Colleen, based on where your husband is on his treatment I would suspect he is not wanting to have any cans of anything. The role you are in and especially just after treatment is the toughest role, in my opinion. I've been on both sides. It takes a lot of determination and perseverance to keep pushing while you see the patient falling so short of what the doctors all say is the minimum requirement. It will help facilitate healing if we all just listen to them but we don't. He is so fortunate to have you by his side, cracking that whip, if I may, with nothing but love surrounding him! Come here to vent and keep pushing. As soon as he hits that start pushing protein shakes or something healthy with calories to keep the swallow working so things don't get much more complicated.

This was the roughest patch for me for sure. Hang in there it will get better!

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Jun 2007
Posts: 10,507
Likes: 6
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Patient Advocate (old timer, 2000 posts)
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Collen, you can lead a horse to water but you cant make them drink. I know its not easy for anyone right now. Im sure your husband feels lousy and you have to be getting frustrated with his stubbornness and lack of dedication to following instructions. If you arent annoyed, then you are a saint! Being a caregiver sure is one heck of a difficult job! But you do it very well smile

One caregiver here got so annoyed with their patient they told them either you listen to the doctor or I wont help you anymore as there isnt anything I can do. That was all it took for their patient to snap out of their funk and get with the program.

Honestly, if your husband would give you just 3 days to turn him around and take in the proper amount of formula and water he would feel so much better. Please ask him to give it a try and if he doesnt feel any better then he can continue with his own plans of only 2 out of 6 cans.

He can also still get hydrated which will help him too, get the doc to write a prescription for at least 2x a week to get hydrated. That will help make a big difference.

Hang in there, he is almost out of the tunnel and very soon he will begin to start having some better days. Sooner if he would comply with the proper intake but that is his choice.



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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"OCF Canuck"
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yeah... sounds as though you may need to bargain with him. My husband can be difficult too. He cut his hand last week. And waited until saturday to show me his hand which was at the time swollen, red and painful. It had been like that a few days. I saw it immediately and sent him to the walk in clinic for antibiotics!!!! MEN! I asked him how that whole - waiting to see if it gets better - thing was working for him. Amputation or a systemic infection was very possible if he had left it much longer.

Anyway - we had a scare a while back - we thought he might have colon cancer.

I said to him after the fact - the difference between he and I - I was dx'd handled my own care and was my own advocate. I read, did some research, and decided what I could do to help my self recover and changed my diet to be more healthful etc... I did what I could to try and prevent a recurrence (though there is of course no promise of that) I told him - if giving up certain things, and doing certain things would make me feel better and help me recover I would do it gladly. Why wouldn't you...? he would rather just plod on and suffer the consequences.

A good friend who is 5'6 easily 250 - lost his wife due to cancer 8 months ago - he's the only parent his children have now - this should be the impetus to get himself into shape and stay that way if for no other reason than his kids. He told me yesterday... I have to be on pills for life, for GOUT and HIGH Cholesterol. I told him - change what you put in your mouth things will improve.

People know what they should do but tend not to anyway.

hugs.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Sturt1 Offline OP
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Cheryl think that is a big difference btwn men and woman.... If someone said do this, you will feel better... I would and also would be researching for anything else that would help..... Not sure why men are so resistant to trying, or listening to professionals who do this for a living and have knowledge ,skills and ability to help ...drives me crazy!


Colleen
Wife/advocate for husband. 52 yo nonsmoker
ISSC tonsil stage IVa. HPV + Enlarged node & tonsil,
CT 2/13
Bx lt tonsil 3/8,
PET 3/16
Tx started 4/9/2013 Cisplatin x3 and IMRT x 7 wk
Tx end 5/29
GT 5/24-7/17
Officially in Recovery Phase! : )
CT scan 8/13-NED !
CT scan 7/14-NED
5/2018- 5 year anniversary -NED
Joined: Jan 2013
Posts: 1,291
Likes: 1
Patient Advocate (1000+ posts)
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[quote]People know what they should do but tend not to anyway.[/quote]Boy, you are the tough one. In fact, some truth in there adds to the sting.

Like many humans who choose to go the doctor later than earlier, I had an similar infection, started out rather minimal, then over several days grew to a larger red, sensitive, pretty puffy sore, I do not think it had open sores at that time. Pretty uncomfortable, and like you, my wife was getting all over me to go get it looked at.

When, after a few days of extra prodding and swift kicks in the ass, our family MD saw she, she just BARKED at me, and basically told me I was a fool and thee infection I had was a grain of sand distance from being full on systemic infection, I think she called it staph. Pretty simple sounding but I guess actually life threatening.

After than I am learning that not going to the doctor when obvious, is not a sign of being a tuff guy but a stupid guy.

So what do I do -- wait longer than I should have to be seen for the growth in my neck. hummm... at least I was lucky and was told the wait probably was not a factor in any pending death sentence.

Maybe I have learned my lesson. Hope I live long enough to claw back some benefits from life lesson slow in coming.
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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