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.