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My husband, has been a year out from radiation & chemo..Oct 2007 and can still not swallow food...been trying...just ice chips. Has been having speech therapy. Have had swallowing test, but soft "food" stops at top of esophagus. They say it's still inflamed. How long to eat again? Esophagus dilation has been mentioned...not sure if we should have this done while still inflamed. Any comments on this situation?

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Barb & Goldy,

So sorry to hear it's been such a long road since finishing tx. With me being a novice here I don't really have anything to offer at the moment except my sincerest hopes that things get better for you and your husband soon.
I would recommend "goggling" Esophagus dialation to learn more about this procedure and maybe you will even find some answers as to the viability of having the procedure done when the esophagus is still inflammed.
Calling all veterans here!!! Anyone with some experiences or advice?

Ija


Ija wife-husband 47y healthy nonsmoker,nvr chewed.Dx SCC 01/05 primary left anterior toungue w/2 surgeries 02/05 no rad/chemo recurrence 12/07 no rad/chemo. 07/08/08 modified lt radical neck disection 3 nodes removed 2 pos SCC. TX 090808 taxol & carboplatinx7 radx37 w/ethyol.
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Sorry to hear of your husbands lasting side effects from tx. Does your husband have any issues with how far he can open his mouth? What about his teeth, are they in good shape?

I recently had a set back myself so understand how foods seems to stop and not go down. Ive heard good things about the dialation, quick and not that painful, works very well. Hoping somebody who has doen it will post more info. I seem to be headed down that road too.



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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Thanks, MS T...for a response. I'm new at this type of interchange online. My husband really wants to eat again..They've done a swallowing test but the video shows that it just stops at the esophagus. Tiny amounts of liquid do get down. He just wants to know how soon everyone got they're PEG tube out and were able to eat again. That's the question. But he does realize he may have the tube for life. I've done some research on the esophagus dilation...can't find out if we should wait for it not to be inflamed any more or if its safe to do it now. It's been a year this month since he finished his treatment. Thanks for any responses.
Barb & Goldy

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Barb,
I understand when there are no complications the PEG is removed soon after we are eating again and able to hold our weight.

My MO told me today that it is normally between two and three month.

He also said, If I wanted, I can schedule to have mine removed in two more weeks, which in my case will be at about seven weeks.

Also I have a tickle like irritation in the "swallow muscle" part of my throat that causes me to have a little cough every hour or so and today when I mention it the MO said that is due to healing in that area that will go on for several more months.

I am sure he said several more months, not a whole year.

Was your husband swallowing through his treatments? I know all my Docs constantly stressed how important it was for me to swallow considerable fluids (at least) so as not to lose my swallowing reflex or allow my throat to excessively constrict.

I was told by my ENT that swallowing through treatment is essential and even then to some degree throat constriction will occur. He said the constriction problem seems a bit worse with chemo-radiation that radiation alone.

Keep in mind, I have had no complications and the only reason I have for the PEG is convenience since most food still tastes bad.



Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

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As you know I didn't have the Peg but one thing we all have in common is the recovery and we all have a very hard time gaining weight post Tx and that can easily last a year or more. Peg or not, our bodies need many more calories than "normal" during our long protracted recovery and I for one don't think our team of doctors have a clue on this topic. I constantly give my doctors at Moffitt my experiences and also share this site's experiences in hopes that it may help others yet to come. I occasionally get an e mail from one of my cancer docs asking me what my experience was with a particular issue and it gives me comfort that he may pass that on. Perhaps because Moffitt is a teaching hospital I have found them very receptive to feedback.


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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