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#192851 08-14-2016 05:47 PM
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Alpaca Offline OP
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Hello, I have searched here but can't find answers. One of my oral cancer friends has recently had a permanent peg installed two years after treatment for BoT cancer treated by chemoradiation. He can eat only a very small amount by mouth and is very thin. The big problem is that he is suffering frequent, sometimes constant nausea and no-one seems able to figure out why. He IS putting on weight so doesn't want it uninstalled but nausea (even after meds for it) is a terrible thing to have almost all the time.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Alpaca #192852 08-14-2016 07:59 PM
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What is he putting in the tube? How much does he put in the tube and how fast? Also, which method of delivery is being used? Pump, Bolus (very fast drip), or with a feeding pump like the Kangaroo or Joey pumps which are the most popular.

Most nausea problems feeding tube users have is due to what is being fed and how. Watering down formulas and slowing down the delivery usually fixes the nausea. If after 2 weeks it hasnt helped then it could be the formula (that is if he is using formula). Here in the US, there are at least a hundred different options of prescription formula. Plus we have many over the counter formulas too like ensure or boost.

Please ask your friend about the questions Ive asked and discuss the minor changes in speed and adding water (if he uses formula). Ask if there is anything else I should know about to help.


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
Alpaca #192853 08-15-2016 12:51 AM
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Alpaca Offline OP
"OCF Down Under, Kiwi"
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Thanks Christine. All of the above have been tried. Even on days with no formula, the nausea has persisted. They now think it might be the "balloon" irritating the stomach. Have you heard of this before? It seems to be an unusual problem.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Alpaca #192854 08-15-2016 05:41 AM
Joined: Jun 2007
Posts: 10,507
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The nausea is pretty common. But this sounds like an extreme case. I guess it would be possible for the balloon to cause stomach irritation.

Is your friend in any pain is his abdomen? How long has this problem persisted? Was it like this right from the start? What method of delivery is your friend using? Has he always done it like that?

Is your friend able to eat yogurt? Maybe the kind with probiotics could help? It couldnt hurt to give it a try. Just like the TV commercial says... "try the 2 week challenge". I think its eating 2 yogurt (the kind with probiotics) twice a day for 2 weeks.



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
Alpaca #192855 08-15-2016 01:29 PM
Joined: Nov 2009
Posts: 644
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Alpaca Offline OP
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Thanks again. He had no nausea until they inserted the peg a couple of months ago.He has also had problem with technical aspects of the peg (like it coming out). His partner is a nurse so they have tried different methods of delivery and see the surgeon and dietician. He has seen the "gastro" puzzled but they are puzzled - will do some thinking and get back to him.

They prefer to use the pump because that HAS led to weight gain in spite of the nausea and he doesn't want to give up on the peg yet.

Have you seen patients give up on the pump or give up on the peg if they can?

He says it's like being on chemo again.



1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Alpaca #192856 08-15-2016 06:09 PM
Joined: Jun 2007
Posts: 10,507
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Yes, Ive seen patients have their feeding tube removed without being ready to manage their intake. They have all encountered some type of major health problem. By not taking in a diet thats as balanced as possible they will eventually suffer from some type of health problem from malnutrition.

Having a feeding tube is not fun! Its uncomfortable, time consuming, messy, inconvenient among other things but it is also a life saving necessity for many.

Im sure your friend appreciates your help. Maybe they would like to join our group?


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
Alpaca #192860 08-16-2016 03:17 PM
Joined: Oct 2006
Posts: 383
Platinum Member (300+ posts)
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Joined: Oct 2006
Posts: 383
Hello Alpaca,

I experienced nausea with my first tube experience 10 years ago. Was told to cut intake in half but double feeding frequency. That worked for me. You might be on to something regarding the balloon and tube placement.

Prayers and best wishes.


SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****

Alpaca #192902 08-21-2016 10:26 PM
Joined: Dec 2003
Posts: 2,606
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Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
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Alpaca, I just happen to have a feeding tube for life and have gone through 4 different formulas since April and have spent countless hours chasing nausea and heart burn. I am using a Kangaroo Joey but mostly because I consume a lot of water and 65+ syringes a day didn't sound like fun.

If your friend consumed the same amount of formula as used when the weight gain occurs, more weight will be gained. When I use the pump for feeding, it takes me almost an entire can extra a day to keep the weight on. The nausea needs to be isolated, if possible. Almost everything I see is an overload of bile/stomach acid. When the stomach is not full, I have bubbling mucus from my stomach and if I don't do something in a day or two, it turns to hydrochloric acid that I can taste. Also, the stomach continually pulls on the bulb as if it is trying to digest the tube. When fuller, none of that happens. I used baking soda to break the cycle and have only needed it a handful of times so far which is good as it can cause an increase in blood pressure over time if used too often.

I started looking into all the ingredients and especially the method of calorie boosting being added. Some use sugars, others use fats and then there are some with carbs. Each method has some nuances that cause other issues. One uses fructooligosaccharides which are sugars from fruit and vegetable sources like onions, garlic, bananas, agave, artichokes, asparagus, leeks, etc. In some people these sugars pull helpful bacteria through the digestive system beyond where they would normally be found. Salmonella is one. Probiotics, as Christine suggested, would help with that. I make yogurt every week and use whey.

The transport agents for fat delivery is also a culprit. Everyone is trying to find the magic that works for everyone. Unfortunately, the body is hard to fool. Comfort can only be found with a lot of work and experimenting. All the obvious questions have been asked except possible GERD issues, sitting or laying down while feeding, feeding too late at night, not ingesting enough water throughout the day, adding meds to an empty stomach, not getting enough restorative sleep, for example.

Another thing I am curious is if there were already nausea issues and that is what led up to not eating as much. It sounds like it.

I was told about a study that found as high as 25% of people that don't have our swallowing issues aspirate saliva while they sleep at night. Having too little water during the day will thicken the sinus mucus and cause a concentration of bacteria that can end up in the lungs but if not, in the stomach.

Those are some things I have looked at.


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

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