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#147465 - 03/26/12 12:26 AM Possible trouble swallowing
Dawnb Offline
Member

Registered: 03/25/12
Posts: 9
Loc: united States
Finished 5 weeks of radiation and chemo. Husband has been using PEG for 1 1/2 weeks now. Only met with swallowing therapist once and was given exercises for swallowing and told to swallow at least 20 bites. He has fallen short on 20 bites, sometimes only 6 or 10 and missed a couple days. Yesterday I found him gagging up the peaches. He is convinced they are going down fine and his swallowing is fine and that all food gags him but I wonder why he has such trouble getting things down and keeping them down. (not throwing up after using tube). Could this be a start of losing the abilty to swallow? I can only nag and push so much. I plan on calling the therapist tomorrow without him knowing and let her request an appointment and hopefully a swallowing test. Maybe I am wrong but don't want him to have issues forever with swallowing.

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#147467 - 03/26/12 01:35 AM Re: Possible trouble swallowing [Re: Dawnb]
julieann Offline
"Above & Beyond" Member (500+ posts)

Registered: 06/24/09
Posts: 875
Loc: Alabama
Hi and welcome:
I can remember how hard it was to swallow anything of substance at first but was forced to swallow by mouth in order to retain my swallowing ability. At the 1 1/2 week timeframe like your husband, I swallowed mostly liquid supplements, one in particular is (still do it now if I have trouble swallowing some days), Nestle VHC (Very High Calorie) Carnation Instant Breakfast. One small can has 560 calories. It only comes in vanilla, but doesn't taste too bad, but I chug-a-lug it down with a straw, but it still counts as swallowing by mouth wink. I order mine from CVS Drug Store by the case and they usually get it by the next day. Everyone is different it seems with their swallowing capability, and even though it's been 4 years for me, like I said, I have trouble now and then swallowing and when I find things I can swallow, stick to them. Good luck and keep in touch. Others will respond as soon as they see your post. This is a wonderful Forum.
Julieann
_________________________
Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile

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#147470 - 03/26/12 04:27 AM Re: Possible trouble swallowing [Re: julieann]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9135
Loc: PA
Dawn, when someone undergoes radiation for the head and neck areas it will greatly impact their swallowing capabilities. This happens to every single one of us, even the ones who seem to sail right thru it easily. As a former patient, I can tell you that several times I choked while attempting to eat and it really scared me to keep trying. A few times were pretty bad!

Nutrition and hydration play a huge role in how good your husband will feel during his treatments. I know you cant force him to eat or drink but if he does not take in enough he will end up being hospitalized. Every single day he must take in a minimum of 2500 calories and 48 oz of water, more is even better. If he isnt getting this amount in then he will not feel very good and it can cause dehydration and malnutrition.

He should try sipping water and he should be doing this every single day. Believe it or not, a patient can lose their ability to swallow and their muscles 'forget'. Have him keep sipping water all day to keep his swallowing muscles working. Here is a list of easy to eat foods which should be helpful.

Easy to East Foods
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital 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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#147471 - 03/26/12 06:02 AM Re: Possible trouble swallowing [Re: ChristineB]
Dawnb Offline
Member

Registered: 03/25/12
Posts: 9
Loc: united States
Thankfully my husband is getting his 7 cans (2625 calories, as recommended by dietitian) and I aim for 80 oz. of water. Wasn't sure if we were hitting that since he would tell me he drank some from a glass. I marked 5 bottles of 16 oz. water 1-5 today and just put the last one in the tube. Of course he protested saying he was FULL but I told him he would be sleeping in a minute. Also put in some juice for extra. Tonight he had tried cheerios, I asked how much and he said "8". WOW!! I think everything tastes so bad he mentally can't keep it down. He is actually looking at a cruise for the end of May, I won't be booking till he is back to eating. (I don't dare mention to him how long it could take to be back to normal.)

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#147477 - 03/26/12 03:39 PM Re: Possible trouble swallowing [Re: Dawnb]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
I finished rads may 4th... Last year - then went to LA - aug 4 - eating still wasn't much fun... But I enjoyed my trip regardless. just bring some extra nutrition with you or make sure there's some available (ensure? Boost?thanks way if there are a bunch of things he can't eat he'll still have something reliable to fall back on. I flew into LA bought a protien powder - and made my monin smoothie very day before we left the house hat way if we didn't fin anything palatable - hen. Had a least had my smoothie to fall back on. 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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#147479 - 03/26/12 05:03 PM Re: Possible trouble swallowing [Re: Cheryld]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9135
Loc: PA
Traveling can still be done even when a person isnt able to eat properly. Of course eating is such a social event that a cruise might not be that enjoyable until he is better able to eat. Ive heard cruises have the most wonderful food available 24/7.

Getting extra protein will help him to heal faster. From what you wrote, your husband is doing very well with his nutrition and hydration. I have found a liquid protein which has 25 grams of protein in only 2.9 oz. I began using this instead of the protein powder.

The sense of taste should begin to return after about a month. Things will taste great one day and horrible the next. It will be a long road to get his full sense of taste back. For some they will still see improvements at the 2 year mark. Small portions will work best until he recovers more.

Best wishes with a speedy recovery!
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital 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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#147499 - 03/27/12 04:44 PM Re: Possible trouble swallowing [Re: ChristineB]
Jenslp Offline
Senior Member (100+ posts)

Registered: 11/24/10
Posts: 167
Loc: Seattle WA
Hey there Dawn - hope you guys were able to get in to see the SLP. Now is the perfect time for swallowing therapy! It can help him swallow safely, decrease risk of aspiration, and help him eat more and more with greater ability - he still has a bit of a road ahead of him so good therapy now could make a big difference!
Best wishes!
_________________________
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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#147500 - 03/27/12 05:27 PM Re: Possible trouble swallowing [Re: Jenslp]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
It sounds like he's getting the nutrition and water, but all through the tube. I think Christine meant it would be good for him to have water next to him at all times just to sip and swallow. That's what Kevin did and he never lost the ability to swallow. Just a thought, but definitely sounds like it's time for an appt.
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14

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#148631 - 04/22/12 06:00 PM Re: Possible trouble swallowing [Re: KP5]
Dawnb Offline
Member

Registered: 03/25/12
Posts: 9
Loc: united States
Two and half weeks out of treatment and husband is not eating anything, drinking a little water. Called therapist twice and sadly they don't seem to worried. Wish I could get a barium swallowing test scheduled. He thinks he is still doing ok and his swallowing not affected. I can only hope all his gagging up the buildup in his throat is maybe exercising some of the muscles down there. A note was made on his chart to address this issue on May 2, when he meets with the ENT and swallowing therapist again. At least I have tried. Hard to convince someone to eat something that seems spoiled and foul tasting. I did find him trying a Cheeto and he kept trying to spit the taste of his mouth because it was making him feel so nauseated. WOW, just one Cheeto. I think I'll be a long road to eating normal again.

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#148638 - 04/22/12 08:00 PM Re: Possible trouble swallowing [Re: Dawnb]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Yawning helps stretch the throat try to get him to sip and swallow if possible. Hugs.
_________________________
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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#148685 - 04/23/12 08:26 PM Re: Possible trouble swallowing [Re: Cheryld]
SUEZ Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/21/10
Posts: 531
Loc: AURORA, OH
I think if he is swallowing the water and it is going down his swallowing is OK no? Ron didn't eat alot but he drank coffee and I'd put in his can formula and make him iced coffee and actually put it in a Starbucks glass bottle (he didn't know it was his formula!) and I added sugar and it pretty much tasted like it and he'd drink that AND be getting his nutrition, he didn't have a PEG he had a NG twice but he pulled them out. Does he like coffee? Or soda or something other than water? Can you put your signature with more info? Ron complained all the time bout taste of food, it was nasty but he forced it down because he was hungry. Unfortunately he went from 189lbs down to 130 he just weighed himself Saturday and that was with his darn boots on so I said subtract 3lbs for clothing and he's 6'1! He said he is fine he has "maintained" that weight since his surgeries for Oral Cancer. He eats good too but he was never really big before the cancer either. Tall and thin man. Now he looks even more thin no muscle mass at all and I try so hard to fatten him up! So don't fret he will pull thru this, as you can see Ron has no teeth and a flap and he is eating alot of foods, he had a thin sliced ribeye steak and lobster tail with butter 2 weeks ago! And I made a homemade Pizza Pot Pie and he finally got his pizza taste he's been wanting for years! So it can be done!
_________________________
CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08

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#148697 - 04/23/12 10:37 PM Re: Possible trouble swallowing [Re: SUEZ]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9135
Loc: PA
I found chocolate milk to be very soothing to my sore mouth and throat. It also is loaded with calories and thicker than water so it might be easier to swallow. Chocolate milk is also very good to drink if eating something thats too spicy.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital 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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#152673 - 08/01/12 09:07 PM Re: Possible trouble swallowing [Re: Dawnb]
KenEggman Offline
Contributing Member (25+ posts)

Registered: 04/14/12
Posts: 32
Loc: VA, USA
DawnB, hope your husband is doing better. Based on the amounts of liquid and nutrition drinks he was taking in it sounded like he was taking in great amounts:) I am three weeks from last rad treatment and I gag, choke or worse, if taking a drink thru mouth and it goes wrong way. I also have lots of mucus which I unknowingly must be swallowing and it causes nausa or worse. This is becoming a problem for me in many ways.

Christine, where can we get the liquid protein? I cannot drink as much as I would like but need to speed up my recovery and if I can change my whey protein powder for liquid please let me know where I can get it. Again you offer a home run based on your experience.

Ken
_________________________
48YO M, hlthy, xsmkr(quit 14yrs ago), mod drinkr
1 mo sore throat w/neck lump 3/12
SCC tonsil, lym nodes
4/12/12 rad tonslctmy, mets in lymph nodes
5/8 PEG, 5/10 PORT 7/3/12 Last Chemo (Cisplatin)| 7/10/12 Last RAD | 9/6/12 MRI=No New Cancer
BSA Scout Ldr w/strng desire to live & beat cancer

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#152683 - 08/01/12 11:57 PM Re: Possible trouble swallowing [Re: Dawnb]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9135
Loc: PA
Ken, the dry whey protein powder can easily mix into any liquid. I add it to my liquid formula, but also adding extra water or it becomes a bit too thick for my stomach to tolerate. The liquid protein shots are available at any pharmacy or thru the OCF Amazon link. They run about $3 or $4 each and are about 3 oz. Ive bought them at Rite Aid next to where they sell Ensure and Boost.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital 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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#153103 - 08/11/12 06:48 AM Re: Possible trouble swallowing [Re: Dawnb]
CubanKeith Offline
"OCF across the pond"
Contributing Member (25+ posts)

Registered: 04/28/12
Posts: 47
Loc: London UK
CubanKeith
This is LONDON calling we are doing well in the Olympics I cant afford a ticket but still feel the BUZZ. What a great summer to have Chemo?Radiation treatment, Euros football(soccer) the Open golf, Wimbeldon next year Andy Murray qand now the Olympics. Enough positive this chemo?rad is nasty sh*t. Only a novices advice.
NHS England all my feed is provided I got a Nebulizer it improved the Gunk and mouth smell and lets me talk 500% better than pain killers and better than mouth washes ask for a Nebulizer with sodium Chloride and hang in there, hint No2 love your PEG.I dont believe I will eat right for 2 or 3 months.But I need to stop losing weight so it bottle food and the pump for me.
cheers CB
_________________________
21st March squall cells.Endescopy not oesophagus, ENT .April endo nose CAT MRI general Panendoscopy prim-HPV 16 base of left tongue one node-stage 2.23rd of May.14/5/12 9 teeth out.8/6/12 PICC inserted.11/6/12 1st Chemos 25/6/12 2nd Chemo Cisplatin5FU:27/6/12 PEG23/8/12 Radiation finished 1/9/12.

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#153456 - 08/21/12 04:08 AM Re: Possible trouble swallowing [Re: Dawnb]
Jay Tee Offline
Member

Registered: 08/21/12
Posts: 8
Loc: Oregon, USA
My swallowing therapist suggested I drink carbonated water and I found it was much easier to swallow than "flat" water. It also feels like it is cleansing your mouth. I still drink 1-2 liters/day.
_________________________
JT

Age 58 Dx Dec 2011, HPV 16+ SCC, T2N2M0, Stage IVa BOT and 2 nodes L&R, non smoker, casual drinker, Tx 27 Jan - 6 Mar 2012, Cisplatin x 3 with concurrent IMRT x 35, (70 Gy), Bilat & size (3.3 cm) made tumor inop, Peg Jan - May 2012, Esophageal Dilation x2, PET Clear 6 Jun 2012. Lost 60 lbs!

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