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#20664 07-05-2006 03:20 AM
Joined: Jul 2006
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AnneC Offline OP
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Hello. My name is Anne and I'm 49 years' old, living in Michigan. I'm a recent survivor of nasopharyngeal cancer. I underwent radiation and chemo, had a feeding tube, and ended up in the hospital a few times due to low white blood cell counts and infections.

My worst problem now is the new "me". I have to drink water constantly and am having trouble finding things to eat. Can anyone offer some nutritional advice?

I can't eat anything spicy or sharp. What I hate is that at one restaurant I can eat, for example, mostaccioli, and then at the next restaurant it's way too spicy.

Any ideas?

Thanks!


Anne
Joined: Apr 2004
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Anne,

Depending on the type and location of radiation treatments, different people seem to have different recovery rates after it's all done. Did you have anything done preventively to try to preserve your salivary glands? Are your eating problems related primarily to dry mouth issues, or to mouth sores, or something else?

Back when I was treated (17 years ago), there was virtually nothing that could be done to try to preserve the salivary glands, and I went for a long time with extreme dry mouth that made it very difficult to eat anything other than soft, mushy foods. I lived for many months on things like Carnation Instant Breakfast, applesauce, pudding, yogurt, baby food, broth, ice cream, fruit smoothies and overcooked pasta with very bland sauces. I also needed to have water close by at all times.

When Salagen came on the market, I tried it and found that it helped increase my saliva production. I also resorted to chewing sugarless gum quite a bit, as that stimulated what was left of my salivary glands. More recently, when Biotene mouthwash, toothpaste and gel became available, I found that they helped as well. Over time, I've been very pleasantly surprised to find that my salivary function has returned far more than I ever expected. While the healing process was slow, I was able to get back to the point of eating almost anything I want to, including relatively spicy and chewy foods.

I know it's frustrating to be surrounded by people who are eating terrific food and are able to enjoy it. For now, just try to be sure your daily nutrition is what it needs to be with things that are easy to swallow. You should see more healing (and more ability to vary your diet) with the passage of additional time.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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Hi, Anne. I couldn't really tell from your post if you have a swallowing issue, or if certain spices affect your throat and mouth. By the way, a H&N cancer survivor friend of mine shares that because she has to drink so much water, her hair and skin have never looked better laugh So drink that water! Here are some foods that are good for you, pretty easy to swallow and easy to cook. Angel hair pasta with any of the following sauces:
cooked pureed tomatoes and grated parmeson or asiago cheese.
pureed broccoli, cream and melted grated cheese pureed asparagus with the above
boiled carrots, boiled, mashed sweet potatoes, baked, mashed or pureed winter squash
pureed spinach or spinach & cream soup
any kind of pureed beans
[add Swanson's chicken stock to anything you want to slide down easier.]
pea soup, pureed veggie soup, tomato soup
Chicken thighs, turkey dark meat, slow cooked in canned chicken or turkey stock]
grape juice-white or concord
grapefruit juice mixed with peach or grape so not too tart
When you go to a resturant, tell your waiter[ress] that you cannot tolerate hot spices, etc. and ask them to ask the chef to accomodate you. Also, most resturants have blenders and food processors and will puree a soup, etc. if you request it. Tell us more about your eating difficulties. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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AnneC Offline OP
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Thanks for all the different foods and advice! No, my salivary glands weren't protected during the radiation. I don't have sores anymore, but the ENT doctor said that the lining of my mouth and throat is brand new, so it's akin to having burnt skin - it's so sensitive that everything bothers it. I had severe mucositis and thrush, so my mouth and throat were severely affected by the radiation and chemo. And of course I have dry mouth.

I know what you mean about drinking the water and trying to find good things in all of this. Another plus . . . I can eat all the ice cream in the world and not gain a pound! I guess I have to continue to focus on the positive things to get through this!

Thanks again!


Anne

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