| | Joined: Mar 2010 Posts: 126 "OCF Canuck" Senior Member (100+ posts) | OP  "OCF Canuck" Senior Member (100+ posts)
Joined: Mar 2010 Posts: 126 | 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.
| | | | | Joined: Jan 2010 Posts: 142 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2010 Posts: 142 | 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
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 |
ChristineSCC 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  | | | | | Joined: Mar 2010 Posts: 126 "OCF Canuck" Senior Member (100+ posts) | | OP "OCF Canuck" Senior Member (100+ posts)
Joined: Mar 2010 Posts: 126 | 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.
| | | | | Joined: Mar 2010 Posts: 126 "OCF Canuck" Senior Member (100+ posts) | | OP "OCF Canuck" Senior Member (100+ posts)
Joined: Mar 2010 Posts: 126 | 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.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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.
ChristineSCC 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 | | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | 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
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | 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 "OCF Canuck" Senior Member (100+ posts) | | OP "OCF Canuck" Senior Member (100+ posts)
Joined: Mar 2010 Posts: 126 | 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 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | 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.
| | |
| Forums23 Topics18,223 Posts197,077 Members13,267 | | Most Online1,459
Jan 9th, 2025 | | |
|
