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Elianne Offline OP
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Thanks for all the ideas, everyone, and I will keep all of them in mind,
as we search for tolerable food.
We have been back to the clinic and now have lidocaine (swish and
spit) and tylenol 3 with codeine. And this is only 2 weeks in!
His tongue is extremely sore, as is back of throat and inside of cheeks;
Also sore gums.
We have jumped from eating pretty much anything to soft foods like
soup and scrambled eggs. Luckily he's been eating oatmeal for about
6 months and likes it. I've been pureeing blueberries in about 4 Tb
of milk with some whey protein powder to add to the oatmeal.
I'm going to try the enzyme drops for the possible lactose problem,
but as you say, with the codeine he may not have to worry about the runs
much longer.
He tends to suffer from depression anyway and says he doesn't know how he's going to get through this when the pain is so bad now.
I'm trying to be encouraging and doing the "one day at a time" routine. It's so easy for me (or anyone) to say when I'm not feeling his physical pain.
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.
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I am not sure that Lactose intolerance is a good solution for constipation. The process includes gas, bloating, cramping and diaherra. Because of all the irritation it resulted in 2 divertitulosus attacks before I got it figured out. One came close to putting me in hospital.



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
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Elaine...
Here is a list I created a long time ago of soft, easy foods.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621


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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Elianne Offline OP
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Unfortunately, we're now in a position where he can barely swallow water.
Most of the soft foods will probably not work.
I'm hoping the lidocaine and T3 with codeine will help.
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.
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Elianne Offline OP
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I agree, there's more to intolerance than just the runs.
If milk is the prime culprit, I'm going to switch him over
to lactose-free milk and see if that helps.
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.
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Elaine

Do you know how many calories your husband is taking in daily? If he isnt taking in 2000 calories daily, he will feel lousy. Right now he should be shooting for a minimum of 2000 calories daily with 3000+ even better. I was hospitalized for malnutrition/dehydration while going thru tx. Please talk to the doc about getting a PEG tube for him right away.

Sounds like the diarhea may be coming from the liquid nutrition. Try giving him a different kind for 2 days and see if he feels any different. I know first hand how those formulas can mess up your digestive system.

Take it day by day. Hope today was a good day.


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
Joined: May 2009
Posts: 1,412
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Get a PEG tube. I would also ask for a fentanyl pain patch if the pain is too bad. I am 6 weeks out of treatment and still use them.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
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You have to force the swallowing. After all of this time, if I didn't force swallow, I would be a waste. Sure it hurts a=everything past the lips but it is what has to be done. I know for sure this hurts but it keeps you alive and beats just thinking about pain so much.


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
Joined: Mar 2010
Posts: 126
Elianne Offline OP
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As to the lactose problem and ice-cream, we have discovered a product that is not only "no-sugar added", but lactose-free as well. It seems to be available in vanilla and chocolate (at least, that's all we've found so far). The brand is Chapman's and I think it's produced back east in Canada. Not sure if it's available in the U.S. or not.
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 2006
Posts: 8,311
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Haven't read this thread recently but Carnation IB VHC is also lactose free.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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