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#148792 - 04/27/12 12:39 PM Still can't eat
terrib Offline
Senior Member (100+ posts)

Registered: 02/05/12
Posts: 138
Loc: MN
My husband finished treatment 3 weeks ago and has not ate in at least 6 weeks, hasn't been able to do the 20 bites a day. Saw the RO and CO this last week and both said it is now time to start eating. Easier said then done. In the last 3 days he ate almost 1/2 banana and 1 bite of soggy cereal. I know the list of easy to eat foods but it is his decision what he picks to try. Last night the 1 bite of cereal didn't agree and came up. Everything nauseates him. He has tried taking the meds but it doesn't help. No problem keeping the tube feedings down unless when his gagging episodes make him get sick. The doctors expect a huge improvement in 2 weeks, 11 days left and I don't see it happening. He wants to eat, wishes he could and even has started watching the Food Network while he does tube feedings. (Never watched it before) Has this happened to anyone else, I don't know how to turn it around. He has kept up with the swallowing exercies so things are going down ok, luckily!! Will be meeting with the swallowing therapist this week.
_________________________
Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.

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#148793 - 04/27/12 01:28 PM Re: Still can't eat [Re: terrib]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4593
Loc: Toronto canada
Hi there - i was the opposite couldnt keep the tube feeds down so I forced myself to eat - which Is actually a plus despite the discomfort. Has he tried just drinking liquid nutrition first? I'm not sure what kind of a tube he's using, but I had a JG tube - it ran through the stomach and directly into the jejunum - if he has one of these I would try light foods first - like a sip or two of ensure over a longer period. Part of the reason they give you fluids post op is to get your motility going first off but also to ease you back into eating, maybe just give him an ensure and say 2 hours to finish it - a sip - wait - another wait. Etc. I when I was trying to take my tube feedings I would start to feel nauseated at a half a can and would stop - if I tried to continue on I would then throw up. So try easing fluids first then semi solids and then solids - maybe he just has to retrain his stomach, it doesn't have to be ensure of course it could be anything that has a mild taste banana smoothie... Etc... Is he trying to eat to relace his feeds or as extra - this may also have some bearing. Good luck...
_________________________
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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#148795 - 04/27/12 01:33 PM Re: Still can't eat [Re: terrib]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1843
Loc: Idaho
Hey T!

Sorry you and your husband are having such a hard time, that's aweful! I'm glad that you are going to see a swallow specialist.

So if I'm understanding right, as it's early for me and I've had no caffeine yet, is that it's the gag reflex causing the vomiting? So he tries to eat, it gets hung up or triggers the gag reflex and he throws up? Or he throws up with solid foods as they make him nauseous?

My thoughts are cause basically because if your husband is still on an opiate pain medication, they will cause nausea. They are also funny in the fact that it's a side effect that can come and go with them depending on varying factors (amount of pain meds in the system, empty stomach when taking them etc).

The nausea happened to me frequently due to my relationship with pain meds, I battled it with a mix of mj and compazine as neither alone would do the trick and I was deathly thin and in need of nutrition.

Hang in there, keep searching for answers!

Eric
_________________________
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.

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#148810 - 04/28/12 03:29 AM Re: Still can't eat [Re: EricS]
terrib Offline
Senior Member (100+ posts)

Registered: 02/05/12
Posts: 138
Loc: MN
Thanks for the helpful insight. It is the thought of food, the taste and the smell that make him nauseous and once it is down he has to fight to keep it down, not too successful. He is on oxycodone, maybe that could be the problem. I was wondering about your idea Cheryl about the stomach needing to be retrained. It is not used to having things go in orally so maybe trying a little at a time might help, starting with liquids other than water. He does have the PEG. I felt really bad tonight, we went to a wedding and he didn't eat a bite at the reception and just sat while we ate. Amazing though he doesn't complain and it was a great meal!!! I really miss going out to eat with him. I will admit I spend a lot less time cooking in the kitchen. Hopefully things turn around soon.
_________________________
Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.

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#148811 - 04/28/12 05:21 AM Re: Still can't eat [Re: terrib]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1843
Loc: Idaho
Yep, I'm going with the oxycodone there. Remember that feeling to well for it not to. What's his dosage? if it's over 5mg every 4 hours and he's taking it on an empty stomach then I'd lay big money on that if I could lay a wager on it...sorry I love playing odds, why I love Texas Hold'em.
_________________________
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.

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#148816 - 04/28/12 12:57 PM Re: Still can't eat [Re: EricS]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 7937
Loc: PA
Terri, eating after finishing treatments is not an easy thing to do. With him only being 3 weeks out, everything still will taste horrible and his mouth and throat are probably still raw. Much of this is all about texture. If he has magic mouthwash have him swish that around for about 20 seconds to help numb his mouth. Then spit it out as it could irritate the stomach. Wait about a minute and give him something smooth like creamy yogurt to try. There is a big difference between yogurts, right now stay clear of Greek yogurt and anything that has chunks of fruit. My favorite is the local chain grocery chains blended peach yogurt. The size of the serving is small enough to give him some confidence if he can get the whole thing down.

Good luck!
_________________________
Christine

SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 rad end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
total of 185 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 hospital extended stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#148834 - 04/29/12 02:02 AM Re: Still can't eat [Re: ChristineB]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4593
Loc: Toronto canada
Eric's right oxy - empty stomach could definitely cause nausea small sips an oxy more small sips... And I hear him on the taste smell etc... That's why bland almost flavorless might be better - vanilla something - etc... I can tell you that during recovery anything that was processed tasted horrible!!! it was the chemicals - even now. Natural food tastes best pop is still gross for me. But what I said was also true about retraining his stomach. Good luck!
_________________________
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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#148876 - 04/30/12 10:20 AM Re: Still can't eat [Re: Cheryld]
klo Offline
"OCF Down Under"
"Above & Beyond" Member (500+ posts)

Registered: 05/18/10
Posts: 638
Loc: Sydney Australia
Terrib
your story mirrors Alex's experience. He wanted to eat, tortured himself with food channel shows and even took Jamie Oliver, Rick Stein, and River Cottage DVDs into hospital with him.

Alex loves to cook but by the time he had finished cooking anything, the smell had wiped out his appetite and made him feel sick. Solution: reheat ready prepared meals or eat meals prepared by others (eg eat out).

Problem number two: three mouthfuls into a meal, Alex felt nauseous and bloated and felt if he had one more mouthful he would be sick. Being sick - besides being painful, and embarrassing at times, also meant that all his hard work eating the previous 3 mouthfuls was for naught. A disincentive for sure. Solution: don't push the next mouthful if he really thinks it will end up in tears.

Problem number three: fear of gagging, choking or throwing up caused Alex to refuse to eat in public. Solution: Don't make him eat in public - give him something to do whilst everyone else is eating - serve the drinks, keep the conversation running, take over the music choices. During a fondue/steamboat party with friends, Alex prepared the wontons at the table which made him feel useful and didn't bother him at all.

To add insult to injury, the oncologist chastised Alex for his lack of eating 3 months after treatment finished, told him to "try harder" and suggested he needed to "get over" his taste, smell and swallowing issues. I responded at the time with a fair fit of hissy. When I had stopped shaking, I wrote a letter outlining Alex's issues and why the doctors response was inappropriate. I will attach the letter in a private message for your information. Please ignore the bit about the steroids which was done because Alex had lost so much weight he had also lost muscle mass and needed help (he went from 75kgs to 48kgs during his worst period).

What the doctors don't tell you is the chemo - particularly cisplatin, causes ulcers and inflammation all the way through the gastro-intestinal system - not just the oral cavity. I believe that the bloating and feeling of nausea, are related to this and can take months to settle down (pain killers wouldn't help either).

The doctors also seem ignorant of the fact just how severe physical reactions to disturbed sense of taste and smell can be and cannot simply be "outpsyched" by "trying harder". Your husband needs support and sympathy as long as you are confident he is doing his best. If he is not eating there is likely a really good reason for it. If he can sustain himself with his PEG then so be it for a little while longer. He needs to wait for his body, not just his mouth to recover.

Alex's case may be a little extreme and hopefully your husband will not suffer quite as long as Alex has. But if he does - it is not that uncommon to suffer for months with bloating and nausea.

Hopefully the speech pathologist or swallowing therapist will be a bit more practical in their advice - ours certainly saved Alex's sanity and stopped him from leaping from the balcony believing himself to be a total failure. smile
_________________________
Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight

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#148956 - 05/02/12 12:43 AM Re: Still can't eat [Re: klo]
Jenslp Offline
Senior Member (100+ posts)

Registered: 11/24/10
Posts: 167
Loc: Seattle WA
Chiming in! Agree with most of what's written above - so many factors at play! Glad to hear that you're going to see a swallowing therapist - be sure to ask her if she has experience with H&N Ca.

Might want to try a slight behavioral approach: have the goal be one (tiny) bite of apple sauce every waking hour. A full serving of something - even if it's smooth and easy to swallow - is likely overwhelming on many levels (taste, coordination of swallow, fear of choking, fear of throwing up, fear of never eating again...) Theoretically, if he can adjust to taking in very small bites of apple sauce, spaced out over time - he can be successful - not get overwhelmed- ad build confidence. As confidence builds so too will the amount of bites!
Be patient - he needs to take time - it takes the mouth a very short time to get unaccustommed to food - it is more difficult than I had ever imagined it would be just to get my mouth used to accepting food again.

Good luck!
_________________________
Jennifer (39)
02/10 SCCa Tongue & Base, HPV-
03/10 Partial Glossectomy & ND 11/10 Revision due to additional nodes 12/20-2/2/11 IMRT & concommitant chemo 2/11 PEG in 3/11 PEG out
Back at work and feeling good 03/24/11!
12/20/11 - 9 month f/u PET/CT - all clear!

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