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Joined: Mar 2010
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Elianne Offline OP
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Hi,
Well, here we are after 11 radiation and 1 chemo treatments.
All of a sudden, Gordon has developed a very sore tongue, as well
as a sore mouth.

Unfortunately he has just had the stomach flu for a couple of days and this threw everything off track.

His RO prescribed a mouthwash that contains Solu-Cortef 100 MGM/Benadryl/Nystatin ML MCD. He's supposed to swish and swallow, then not eat anything for 1/2 hr. It's not clear if he's supposed to do this 1/2 hr. prior to eating or not. It doesn't look to me like there is a painkiller in
this mixture, but I'm not sure. He says it tastes vile and hurts going down.

We're having a really bad time with feeding - Boost/Glucerna, non-sugar ice cream and puddings seem to give him the runs, although he's having a lot more dairy so that may be the culprit.

We tried tuna salad with avocado tonight, but he couldn't tolerate the avocado (said it made his tongue sting like crazy). He had chicken noodle soup with an egg in it and ate the tuna.

If it's like this now, I hate to think what it will be like a couple of weeks
from now.

If anyone has any advice on how to handle this, that would be great.
I figure all I can do is call the clinic tomorrow and let them know what's
going on. I feel so sorry for him and don't know what to do to help.
I'm trying everything I can think of, food-wise, but am kind of at a loss
(he's also pre-diabetic).

Thanks, Anne

frown

Last edited by Elianne; 03-18-2010 08:48 PM. Reason: Wrong smiley!

Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
Joined: Sep 2009
Posts: 618
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Anne,

I hate to say this but from here on out eating becomes more like a job then a pleasure frown. It is a game of what is tolerated and what is not, as you are finding out. You will find that he will be moving toward softer foods (pasta) and more bland foods.

I did not get a PEG and eventually was down to scrambled eggs, pate’ pancakes and the like and even spent the two weeks after treatment on liquids only (Boost, Carnation VHC etc…) Eating was painful.

As he moves the other way after treatment, the whole process reverses itself and more and more things become edible and then even pleasurable to eat again grin.

The one consistent thing you will find among all oral cancer patients is the eating issue. This is a great place to come for eating suggestions and you will get a ton of responses.

Did Gordon get the PEH tube?


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Joined: Mar 2010
Posts: 126
Elianne Offline OP
"OCF Canuck"
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Hi Kelly,
No, he doesn't have the tube yet.
My main concern is that I can't get the high calorie/protein stuff
like Boost, ice-cream, pudding into him. It all seems to be too
rich for him and gives him the runs. This leads to weight loss,
dehydration and another step towards the tube. It's not his fault,
it's just the way his digestive system is. And being pre-diabetic
complicates things somewhat.

His ability to tolerate anything that isn't soft is nil. And some things you'd think
would work, like canned pears and avocados seem to hurt
his tongue.

I guess it's trial and error all the way, and I just hoped it wouldn't get this bad for him so soon. I will keep looking for suggestions - this is a great board and
everyone is so helpful and nice.

Thanks so much for your comments.
Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
Joined: Jan 2010
Posts: 142
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Have you considered that he might be lactose intolerant? I thought I was allergic to Diary and I was told in the hospital I was just Lactose Intelerant. For the first time in many years I just take a tablet, there are several brands, and no problem!
You can also get drops. Apparently it replaces the enzyme many of us are missing to break down the protien in Dairy products. I have doing this since January and I can eat even pizza and milkshakes anything. It is the best thing to have come out of this.


55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer
1/18/10 Clr PET
1/27/10 Surgery found Perineural invasion
3/22/10 Began Rad
05/05/10 34 rads
8/19/10 Clr Pet Scan
12/13/10 Clr Ultra sound/biopsy
5/4/11 MRI Clear
8/2/11 All Clear
5/25/12 All Clear
6/3/2016 All Clear
Joined: Mar 2010
Posts: 126
Elianne Offline OP
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Hi Soda Bug,
WHat is the name of the tablet you take for your dairy allergy?
Gordon eats a lot of yogurt, and that doesn't seem to bother him.
In fact, he's fine with collage cheese and yogurt. But it wouldn't
hurt to have this medication on hand, just in case.
Many thanks,
Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
Joined: Feb 2010
Posts: 235
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Anne, Have you tried the Carnation 560? Dave didn't like the Ensure stuff and I don't think he would be the PR person for Carnation but he does tolerate it pretty well.
We couldn't find it locally but were able to order it online.

He also (through someone's recommendation here) is using Juveun(sp?) and that seems to sooth his mouth before he tries to eat.

This is from the sore he has BEFORE treatment so I can't even imagine what it will be like at the stage you are at!!!


CG to Spouse BOT, Chemo and radiation started on March 29,2010
Ended on May 14,2010. LET THE HEALING BEGIN!!!
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I don't think the brand matters so much as the when you take it.
You HAVE to either put the drops on the food or chew the tablet with the VERY First mouthful. With Milk shakes I actually chew a second one. As to yogurt and Cottage Cheese I could/can eat those without the Enzyme added. They are processed enough that the diary protein is not a problem. I can also eat Kefer which is sort of a liquid yogurt without adding the enzyme. The brand I purchased first is Lactoad Fast Act. I will be getting the drops since the tablets will become a problem as I move through Radiation. Most of the Ensure or other "drinks" can be purchased Lactose Free.


55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer
1/18/10 Clr PET
1/27/10 Surgery found Perineural invasion
3/22/10 Began Rad
05/05/10 34 rads
8/19/10 Clr Pet Scan
12/13/10 Clr Ultra sound/biopsy
5/4/11 MRI Clear
8/2/11 All Clear
5/25/12 All Clear
6/3/2016 All Clear
Joined: Mar 2010
Posts: 126
Elianne Offline OP
"OCF Canuck"
Senior Member (100+ posts)
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Joined: Mar 2010
Posts: 126
Thanks - probably the pharmacist will be able to make some suggestions,
but we could try Lactaid Fast Act if we can find it.
The other alternative would be to buy milk that's lactose-free.
Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
Joined: Sep 2009
Posts: 618
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Anne,

Hotdogs are an amazingly soft protein. Macaroni & Cheese, and all the frozen dishes you can find (processed food is softer). Salisbury steak worked for a while. Fruit went out the window fairly early on (too acidic).

I did not try and eat fabulously healthy food at your point. I just tried everything I could find at the grocery store that looked like I could tolerate. I still have stuff I will never eat. My wife and I went shopping together; we made it kind of an adventure in eating.

The Chinese place up the street had some good stuff also, beef and broccoli was nice for a while. I started giving the beef to my son and just had the rice, soft broccoli and sauce when chewing hurt.

When I started the pain meds (about 5 weeks in) the constipation started, so you may not have too much longer with the runs.

Just try everything and get ready to hunker down with a man who will have little taste for a while.

I’m 5 months out and can taste and eat almost everything I used too have so keep the faith.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Joined: Jun 2007
Posts: 5,260
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Joined: Jun 2007
Posts: 5,260
If you make him any pasta, overcook it by 20 minutes, That's what I have to do as it hangs up in your mouth. Poached eggs and very fresh brad butterd heavy with the eggs broken over them or pancakes instead of bread , butter heavy there too. I use I can't Believe it's not butter and it has the same flavor. Cream of whaet works fine as does oatmeal. Hurts the tongue like hell as it all does, but he will get used to it. There are many things you can feed him.. Experiment. LOL I sure thro a lot of food away.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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