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#121682 09-12-2010 02:47 PM
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Hi everyone,

Sorry to be so out of touch. I haven't posted for awhile because things have been very stressful on many fronts here. Overall, Roy seems to be making progress except in terms of his eating. He is able to drink Ensure and eat very soft foods like pudding, but that's it. If he tries to eat other things with more body, like mashed potatoes, they seem to get stuck and build up in his esophagus after swallowing. Then, they will suddenly decide to...umm...lets say...eject. Consequently, he gets 99.9% of calories from his feeding tube. Is this normal at 4 months post treatment? He has gone to a speech therapist but finds that the exercises do not help. At this point, would it make sense for them to do some sort of imaging to see what's going on in there? Thanks for your input, Laurie


Laurie

Wife (48) to Roy (52): He is a non-smoker, non-drinker, computer business owner, country musician, Dx 11/15/09 Stg IV SCC of right tonsil, T2N2bM0, had ND and tonsillectomy 1/8/10, Port 3/11/10, Peg 3/16/10, Erbitux, 33 IMRT, finished treatment 5/5/10
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Laurie,
So sorry to hear Roy is having difficulty eating. My hubby finished treatment right about the same time as yours, and has had a swallow test. I would highly recommend this. They video x-rayed him swallowing different foods and see exactly where the "hang up" is. We are waiting to get some targeted therapy for this.

He looks forward to being able to eat solids without washing down each bite with gulps of water -- someday hopefully. Anyway, I guess all I can say is this is a SLOW process, that taxes all our patience! Hang in there. We CG's have a tough job, but do it through our love. smile



Bonnie

CG to husb John, 57, love of my life for 35 yrs.
Dx 2/10, T2N2cMx, SCC BOT & lymph nodes.
Non smoker. Biopsy HPV+.
No surgery - IMRT 35X + 7 chemos cleared BOT
9/10-mets to lungs.
2 rounds chemo, last one trial drug which did not work.

Lost the battle, but walking in Glory 9/7/11.
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Try putting a lot of butter on his potatoes and some sour cream as it melts into a soft thin liquid as the butter does. It makes it much easier to swallow but the poatoes, no matter how smooth and creamy they are feel like a mouthfull of sand. Good luck to you both.


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
EzJim #121822 09-16-2010 10:50 AM
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Laurie, yes it is possible for someone 4 months post treatment to still be having problems eating. When I went thru chemo and radiation, I depended on my tube for about a year after it was finished. Here is a list of easy foods, maybe try some of them. One surprising food to try is canned peaches. They slide right down.

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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I have found that peaches are great unless you get cling peaches. These are too tough for my nasty mouth but very ripe freestone peaches are easy even for me. these are my favorite fruit for now along with very soft canned pears.


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
EzJim #122819 10-06-2010 07:10 PM
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I found that during treatment I lost my appetite completely. I had mastered a lot of foods prior to the treatments effects kicking in. I think the opening to the esophogus shrinks after awhile. I had the same problem where mentally I would want to eat more solid food but it just wouldn't go down the hatch wihout getting stuck. IT was very painful and it would make me throwup too.
Its so frustrating. I tried every day to just eat small bite of soft solid fruits and this helped. At first it burned like hell and it felt like it was gettinig stuck but I think it must have slowly opened it up more and more. It kind of felt like heartburn or indegestion at first. Honey dew melon and catelope felt nice because it was nice and cool and not too acidic. Pineapple too. I think Pineapple has some healing properties as well.

Keep trying. He could also have his esophogus stretched byt getting a procedure done. Many people here have had that done and it seems to help with swalloing. I'm so sorry. It must be so frustrating!


Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
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at least he is trying to eat, mine won't. He tries and than he goes a week or more without any kind of food except for his ensure or boost or his cans from his feeding tube. BUT he does drink his beer...I told him he can not survive on beer. I ask him to please at least do 3 of something a day before the beer.this is our fight every day...instead of me saying i love you in those words i tell him please stop smoking and drinking. it don't work I try like crazy, i even tried baby food my grandkids don't eat he won't even try. he does every now and than do a mcdonald's milkshake. he says food makes him sick, and makes him get an upset stomach which i tell him you have to keep at it every day until your stomach gets used to normal food again. I told him there are a lot of people from this cancer that never get the chance for real food again and he should feel good that he can eat again IF he wants to! I don't know what else to do...or say.


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
passed away 4.3.15, RIP Ron, you are greatly missed
SUEZ #123454 10-22-2010 02:29 PM
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If I understand you correctly Suez that your significant other is still drinking and smoking then he is just wasting his life away as his cancer will most likely return and virtually nothing will stop it next time. Getting the right calories into his stomach should not your primary focus. Stopping his tobacco and alcohol is.


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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I cant eat mash potatoes either no matter what i add to them. Funny cos i thought it would have been the first food i could eat. I have tried it several times and have given up on mash, maybe its the starch in it making it very sticky. All i know is i felt so sick after eating it that i stopped trying.

I found that cooked noodles chopped up finely in broth are a really good start.

I admire all the CG on this website! You guys are so caring and patient!!! I went through treatment without much help from anyone and found it really hard (probably my fault since i have always been very independent). I wish now that i had got my hubby more involved during treatment to eased my load a bit.


Minh


35 Yrs old
03/10 SCC T1-T2
Partial Glossectemy end March - margins not clear enough.
While waiting for resection - cancer returned,2 new cancerous lumps
Re-section End May & flap from cheek attatched. Margins clear.
Mid June - 4 teeth out
Mid July -32 Rads and 3 Cisplatin
6th Sept 10 Finished Treatment!!
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Minh - Don't know if this would help, but my son put gravy on just about everything. I think it helped to slide down the mashed potatoes or whatever he was trying to eat. And -
Suez - I sure do second what Davidcpa says about stopping the alcohol and smoking! Not sure if this is correct but I've heard of some Radiation Oncology groups that won't even do the Rad treatments to begin with if they know the patient is still smoking since it just cancels out the effects of the treatment. Maybe if you showed him what David said, coming from someone other than you, he might take note and be better able to make an informed decision about whether he wants to live or not. I cannot speak from experience because I've never smoked, but it seems that for some people, it is so very hard to quit. I just lost a very dear friend of mine - a nurse and smoker - to cancer. Now - regarding the beer, you could be sneaky and substitute non-alcoholic beer? Sometimes us CG's have to be sneaky and I have no qualms about that.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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