It's been just over a month since my dad's surgery and I can say that with each day he's getting stronger and better. We meet the radiologist this week to discuss treatment options. I assume he will be starting radiation in the near future. The Path results came back - out of the 77 lymph nodes removed 3 were affected on the left side. Over 70% of his tongue was removed.
My dad's main source of nutrition comes from his feeding tube (g-tube). However, the past couple of days, he's been having cravings for soup. Initially we didn't think much of it. He's been practicing his swallowing with a teaspoon and water. Some days seem easier than others. But, what surprised us all was that he managed to swallow the soup and finished a bowl of it. The constancy was thin (slightly thicker than broth). I am concerned that there is a possibility there's fluid that leaks into the wind pipe and he�s not feeling it. He didn�t have the need to cough afterwards. I am cautiously happy about this. I was curious if others have had similar experiences - after having a total glosectomy we didn't think he'd be swallowing so soon.

Your father should get a swallowing test done. I believe the correct term is a barium swallow test. I know Charm has done several of these so he can give you all the details. You need to be certain your father is not aspirating when he tries to eat.

Lea

It's wonderful that your Dad can swallow so soon after his surgery. When I was still recovering from surgery, I was assigned a Speech Language Pathologist (SLP) who showed me the teaspoon of water exercise but I was aspirating so we stopped.

My advice would be to ask the doctor for prescription for a modified barium swallow test (MBS). It's jointly administered by a SLP and radiologist. It also has different names: videofluoroscopic swallowing study, or videofluoroscopy; esophagram; or cookie swallow (although it's usually crackers)

Basically he will sit or stand next to an x-ray machine. The SLP will give him different foods and drinks mixed with barium . The barium makes the food and liquid show up on the x-ray. The SLP will ask him to do different things during the test. He may try soft foods and hard foods, and thin liquids and thick liquids. He may take small amounts and large amounts. He may be asked to move his head in different positions. He may also try things like swallowing hard. Ask that the test be recorded so it can be watched again later.

The MBS not only tells you whether there is aspiration but also lets the SLP see what muscles are not working or where the exercises can help most.

Thank you for the advice. He has done one swallow study but it was done 2 wks after surgery. I have called the speech therapist and asked if we can book a follow up study. His swelling is down and he's much more alert now. We found that wk 3 he was still very tired and would fall asleep in mid conversation. By wk 4 he was up and present. That�s when he began practicing with water and a tsp. Hopefully we can get a second study scheduled soon.

What was the result of the first study he had done? The biggest issue after I lost half my tongue was moving food to the back of my mouth so that I could swallow, but once I got it there I was okay. Since he hasn't had radiation yet he should still have a good coughing reflex if he is aspirating, so the fact that he's not coughing is a great sign. If he did aspirate he'd also risk pneumonia and the fact that he hasn't is another great sign. Get another study done and if he passes that feed him and fatten him up before he starts treatment. The treatment is tough at any age but especially tough on the elderly. Good luck to you and your Dad!!

What was the result of the first study he had done? The biggest issue after I lost half my tongue was moving food to the back of my mouth so that I could swallow, but once I got it there I was okay. Since he hasn't had radiation yet he should still have a good coughing reflex if he is aspirating, so the fact that he's not coughing is a great sign. If he did aspirate he'd also risk pneumonia and the fact that he hasn't is another great sign. Get another study done and if he passes that feed him and fatten him up before he starts treatment. The treatment is tough at any age but especially tough on the elderly. Good luck to you and your Dad!!

I have found that the best way to get food to the back of the mouth is by taking a drink of water. - BUT - this is important. _ the drink needs to come from a water bottle which shoots the water to the back of your throat. A glass of water does not work - the water needs to come from a bottle. Good luck.

Donna

Thicker drinks like almond milk help too.

It is very important that you get the barium swallow tests. I have had many and trying on my own has landed me in the hospital 2 times for asperating turning into pneumonia. I am still working with my speech pathologist. I wish they would let me eat something a little thicker but after this last bout with pneumonia I can not even drink water. They say my muscles are working so I look at it as if water is too thin let me try real food. I have an appointment soon and hopefully they will agree with me. Good luck and stay safe with liquids.

This is my first time to actually respond. I've been reading all the comments for several mos however. My sister in law is a dental hygenist and she told me about the website. My cancer was 16 yrs ago. I had surgery the first time and a year later it reoccured so I had 8 weeks of radiation. My cancer was on the posterior pharngeal wall. It was scc and was poorly differentiated so was aggressive type. They really gave me a big dose of radiation and my mouth was very sore for over a year and still after 15 years I am having swallowing issues and problems with sore mouth and very freq dental issues. I also have contacted atypical mycobacteria in my lungs. I have been on many antibiotics over the years and still have a constant chronic cough and pneumonia and bronchitis and have positive sputum cultures for the atypical mycobacteria. Recently I've had swallowing problems because my saliva has never gotten much better or my taste has not returned much either. I go for more texture than taste. I lived on oatmeal and poached eggs for a year. That miracle mouthwash isn't really a miracle when it comes to swallowing!! I never had a feeding tube because my dr believed my best chance was if I was on the edge between living and dying. So I got the nutrition I needed from what I could swallow only which wasn't a lot. It seems from most of the things i"ve read that the radiation has improved a lot since I had treatment and that a lot of folks have tongue rather than throat cancer. My voice is still pretty much the same for that I"m lucky. I do have issues with swallowing and did have a recent barium swallow test and most anything just hangs up in my throat. I've had to have the heimlich done and that was very scary. I'm seeing a SLP now for some exercises and I have in the past as well. Does anyone have any good suggestions. I know that I"m lucky that I have my tongue and jawbone and some taste. I do like chooolate milkshakes and mac n cheese and spaghetti and mashed potatoes though the potatoes are not really that tasty just easy. I attempt meat and really everything but can't say I enjoy it. For one thing my mouth is very sensitive to even ketchup and things that most would say is not spicy at all ia extemely spicy to me. My husband tests a lot of things for me first to make sure I can eat it. Though even he sometimes thinks it is fine and it makes my eyes water. Even the barium stuff that they gave me with the swallow test burned my mouth. It is my tongue and soft palate and throat all the way down. Everyone pretty much looks in and says it looks good no tumors or anything like that which is good and I'm thankful but it still hurts and isn't much fun to eat. I have a hard time maintaining my weight as well.
Well good luck to all of you. YOu all make me feel lucky because you are hanging in there and doing well. I really appreciate all you telling your stories and sharing information.

Hi, PLTLea
you mentioned "very sensitive to even ketchup and things that most would say is not spicy at all ia extemely spicy to me". My guess is that the culprete is capsacin (found in chilis, red pepper, and paprika) which acts directly on the nerves. I have been able to make mexican salsas for my husband using bell peppers instead of jalepano's. Can you tolerate fruit juices at all?
Maria

Here is a list of easy to eat foods. Most of the foods are milder and a smoother texture. Hope you find something on this list to help make your eating a little more enjoyable.

List of Easy to Eat Foods

Thanks to you all for the suggestions. I am finding it all very helpful and it is nice to know that other people have the same issues it is not just me. It seems like there is a lot of info out there for other types of cancer but not so much for throat or oral cancer or else I've just not been in the right places to look.
I think I have tried all the foods mentioned and they are the ones that I usaully eat. I didn't mention that i"m a 65 y/o female. Never smoked, only occas had a drink. I did not have HPV. I have had issues with reflux both before and since the cancer dx. My mouth is just extremely dry now even with the biotene, oral balance, freq sips of water etc. I do find that eating small amts freq helps to stimulate a little moisture in my mouth. Sugar free candy and mints only seem to make my teeth break or a filling come out. Never fails me. To answer Maria about the juices. They burn my mouth and so does fresh fruit. I can eat really sweet fruit like in pie sometimes but fresh fruit tastes terrible. Someone mentioned veggies and yes I agree I can eat almost any veggie that is cooked and I do enjoy eating them. I had a hard time with potatoes for a long time because the fiber in them felt like switchblades going down but now if they are really smooth they are good. So many things that one thinks would be good are terrible. I remember at the intial time of the treatment and afterwards anything cold at all was not tolerable. Ice cream tasted awful but thankfully that is gone now. Jello was terrible as was puddings all just tasted horrible and felt horrible in my mouth but that has gotten much better. Just recently jello has started to taste better and so has pudding. I do try the Instant Breakfsst and that is good with ice cream. I find that eating out or even with family is hard because they are done before I even hardly get started. It takes forever and I have to chew and swallow very slowly and everyone else is done and gone. It is hard for them and for me. I enjoy going out but feel like I"m holding everyone else back. Does anyone else feel that way. I'm just enjoying being able to talk to other people that have this issue. I wish I"d known about this sight a long time ago.
Thanks everyone for your suggestions and hopefully I can help other too. So many really good stories about what you have been thru and still are hanging in there and doing things. I feel very fortunate as well. I am still hanging in there and for the most part active though very frail. I also have osteoporosis and have had frequent broken ribs and sternum and a fractured pelvis. The coughing causes the rib fx's. But that is life. I did continue to work as a nurse for several years after my treatment for the cancer but the treatment for the lung issues took a toll and i finally had to stop working. I do think it is really good to stay as active as possible though. It helps you mentally not to get down.
Again thanks to all.

My husband also feels like he eats too slowly, so you are not alone in that. Here is a suggestion for going out or eating with family: have a protein shake or something filling before going out. When you are out, you can order something like a cream soup (and pick at it) or pie ala mode (and enjoy it). Back in the old days (think Gone with the Wind), fancy ladies were not supposed to eat heartily in public, so you can just be like Scarlett.

You might be able to enjoy a shake made with canned peaches or pears mixed with vanilla ice cream. The fruit is cooked in the canning process. When you buy the fruit, and make sure the only ingredient in the syrup are water and sugar. Start with just a slice or two of fruit in the shake, and see how it goes. Be sure to use full fat ice cream as that will help calm the acid in the fruit. If peaches or pears go well (they are the mildest) you can try applesauce in a shake.

Hope we can expand your dining experiences!
Maria

Thanks Maria the shake is a good idea. I can usaully do canned fruits it is just fresh fruit that really is sour tasting to me. I do usually try and get soup when I go out to eat because it is much easier to eat and I like soup. Sometimes they don't have soup though so you have to have a salad or a sandwich and it is just a slow process for me. I usually end up taking most of it home which is ok. It is just I always feel like the people I"m eating with think I'm wasting it or don't like it. But Oh well. We do what we gotta do. Hope that your husband is doing great. Sounds like you take very good care of him.

Most restaurants will have either chicken noodle soup or cheesecake. I have alot of eating issues too so I can usually get one of these items. You can always check the kids menu too. Many restaurants will have applesauce. I add a little sugar which helps to cut the acid in it.

I love homemade chicken noodle soup but the canned stuff I can't do. I had that a lot at first and now just can't do that. The cheesecake has a kind of bitter or bad taste to me too. I do get the children's mac n cheese a lot though or a grilled cheese. When I go to the Mexican restaurants with my family I get the grilled cheese. They all give me a hard time but it goes the best for me. I like beef stew and a lot of soups really. I will try the applesauce again with the sugar. I can tolerate it but it isn't my favaorite.
Do you do the swallowing exercises or have you gone for swallowing therapy? I have been in the past and trying it again. I'm not seeing much now and they said it was somehting that you have to do the rest of your life everyday. I'm still on the fence about it though.
I know you said you had your teeth out do you have implants or dentures? Sounds like you have really been thru the mill. I appreciate your input and admire your courage and everyone else's as well.

How about flan at mexican restaurants? I love flan! I have not had swallowing therapy or even barium swallowing tests. I do not have teeth and no hope to get any every so chewing isnt easy for me. Im missing left cheek and half my lower jaw which further complicates my eating issues. I can only eat certain things which I feel I am lucky I can get down so Im satisfied with what I am able to eat. Some people arent so fortunate.

Please add a signature when you can. Click on the "My Stuff" tab then on the drop down menu select "Edit Profile". Scroll to the bottom and type your info in the white box and submit. It really is a huge help when getting to know new members and offering advice. Thanks!

Excuse me....how about Flan from a Cuban restaurant like the world's famous Habana Cafe? My wife's Cream Cheese Flan won the 2003 Southern Living magazine CookOff Contest out of 35,000 recipies in the Signature Dessert category. Just saying...

David, next time I get to Florida I will make sure I have the time to get over to your side of the state. That flan sounds like it was created just for me

I am thinking of heading down there in Jan or Feb. I know its tax season so I will just have to visit with your lovely wife while you are crunching numbers.

DavidCPA - would your wife be willing to share the recipe here? Sounds yummy.
Maria

It's in her cookbook, The Habana Cafe Cookbook, her first and it won the Gourmand World Cookbook award for the Best Latino Cookbook in the World in 2004. Imagine writing your first book and having it judged the best in the world for that year. We traveled to Orebro, Sweden (home to the world's largest Cookbook musemum collection) for the award ceremony. I thought we would have traveled the farest but over 60 countries were represented and to some our travel time was a drop in their bucket. If you can't find it by searching Jo Gonzalez Cream Cheese Flan on the web then PM me with your email and I'll send you a copy. It's actually easy and fun to make.

Here is the link for Jo's recipe

Jo's Famous Cream Cheese Flan Recipe


Thanks David!!! I still want to have some in her restaurant.

One BIG exception to that receipe. You carmelize the sugar in a oven safe pan the size of the flan that you are making, that way you won't have to transfer the liquid sugar to another pan. The lquid sugar is sooo thick, think the movie The Blob, that you would lose a lot in the transfer, plus it adds an unnecessary step and creates more cleanup. We make about 26 a week and unfortunately there is no faster method. Each has to be made separately other than baking 4 at a time. She has also used the same receipe to make Pumpkin Flan, Strawberry Flan, Cherry Flan and MY all time favorite Chocolate Flan.

David,

Thank you for Jo's recipe! I can't wait to make this. Does her cookbook have the other variations, ie, Pumpkin, and Chocolate? They sound delicious. I see that Amazon has her book for sale. Congrats to Jo!

Anita

No she added those after the Cookbook. I know it was a lot of trial and error but basically she substituted for the cream cheese. I'll ask her when she's not mad with me. lol

Thxs to Christine for helping me with the "my Stuff" at the bottom. It is kind of scrambled but at least it helps I think. I'm 65 now not at the time of the dx of throat cancer. The flan does sound good and I will try that next time I go to a mexican restaurtant rather than try and fine something that doesn't burn. I used to love cheesecake but it is the consistency of the cream cheese I guess that doesn't go well now. Who knows but I get enough to keep me going and that is what counts. I'm also going to look up that recipe for the flan. Sounds great. Thanx to everyone for all the suggestions. I'm finding this so helpful and interesting wish I'd know about this a long time ago.

How about giving Barnes and Nobels pumpkin cheesecake a try? Its shipped in from the Cheesecake Factory. Its consistency is smooth and creamy. Try eating it with lots of whipped cream. I am able to eat it even without teeth, but I cant eat the few pecans that they have sprinkled on the top. Even the graham cracker base is easy to eat. Or they also have an excellent tiramisu there too. Not all Barnes and Nobels have these items but if one doesnt the next closest one may so give them a call. Never know it could be your new favorite food.

Thanks I will give that a try. There is a Barnes and Noble very near us. I do love tiramisu also. you are giving me some really tasty ideas. Thanks everyone