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Joined: Dec 2002
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Thanks again to all who responded. I was doing some research on the web, and according to some info. I found, sometimes an Esophageal dilation causes a swallowing dysfunction caused by a narrowing of the esophagus. Funny, because I always thought the doctor was "stretching" it. But this is all so confusing to me - so I don't really know. Also, according to an on-line specialist ENT doctor, he believes all this swelling is due moreso from the radiation than from the surgery. Also, this specialist said because of the lack of saliva in the mouth, and thus the thick mucus the body produces from not having as much saliva...one should stay away from drinking coffee and tea regularily, because they will dehydrate a person quick! And if a person has a problem with acid reflux - that needs to be treated because this makes swallowing worse. The acid in the stomach can irritate the throat and esophagus. So I think on my husband's next dr's appt. - he is going to look into getting a "swallowing study" done - because even though I can understand some aspiration after surgery - this is kind of ridiculous in what he has to go through, just to get a little bit of food/liquid down - not even counting the numerous pills he takes every day.


DonnaJean
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Donnajean,
I am going through some of the same stuff. My chest scan showed aspiration pneumonia. The swallow staff assumed that I have reflux and prescribed nexium. The gastro/ent. who has dialted my esophagus three times disagrees. He says that the chemo/radiation combination that I had changed the shape and function of my epiglotis and my swallowing mechanism in general has been affected by it. This makes the most sense to me, but since the Nexium is apparently harmless, I am taking it anyway.

The dilation worked and food no longer gets stuck in my esophagus, but I still have a difficult time swallowing anything but soft stuff and still deal with mucous in my throat. I can drink a big volume of milk shake, but cannot seem to eat much volume of food. I still use my PEG once or twice a day but probably could drink the Boost Plus and dispense with it. The good news is that I am gaining a little weight. However I never thought that approaching 8 months after radiation ended,I would swallow so poorly and still have a PEG.

But on the bright side, I feel good and am enjoying life. So what if I can't eat a big juicy steak or a wonderful looking brownie. At least I get to hack it around the golf course tomorrow and to attend my daughter's high school graduation at the end of May.

Danny G.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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Danny - Yep, it's pretty much the same for my husband - although liquids do go down the wrong way - milkshakes and melted down ice cream are usually no problem. He can also eat solids, as I mentioned - but he gets full VERY FAST, and usually doesn't clean everything on his plate. And it's not like I'm overstuffing his plate with food - but he said that food "is not the pleasure" it once was...and he generally doesn't look forward to eating because of the "gullet" or "2nd throat" or whatever you wish to call it. I call it a pain in the tush - since it really hinders progress in getting adequate nutrition on most days. So I do hear you on this one. Reflux also is a problem, and he does take "Ranitidine" and other prescribed meds for it. Sometimes it helps - other times it doesn't. I found another cool web site called Kasamba.com where they have experts in various fields and even an ENT specialist. For a fee, you can ask questions and get an online answer within a day or two. If you don't mind paying a fee for services (usually around $10 - $20.00) - it's an interesting way to get some answers without having to make a trip to the doc. Just thought I'd pass that along.


DonnaJean
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Danny, Just thought I'd let you know that John went to see his oral surgeon today, and he also prescribed Nexium (40 mg.) to take once daily, for the acid reflux. Hopefully this will help him. Has it been helping you or have you noticed any difference since you started taking it?


DonnaJean
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