Hi all,

I used this forum under the names DaniO or Danijams years and years ago when my mom Barbara was in treatment for her tongue cancer. I couldn't remember my password or email that I used so I had to make a new one. She has been cancer free for over 13 years but over the past year and a half she had been loosing weight and having a harder time eating (bear with me because I don't remember all the technical terms). Her ENT scheduled a PET scan back at the beginning of summer and although I told him I'm sure its not cancer they got the scan and it was clear.

Her ENT had mentioned seeing a swallowing doctor but my mom put it off to vacation etc over the summer. We were out one day and she started to turn bluish and couldn't breathe so I called the medics (we were at a theme park) and they came to aid and took her vitals and she seemed ok although very dehydrated. So we kept telling her to stay hydrated keep eating etc. Eating had become more and more difficult so fast forward to last week. She had to be rushed to ER for breathing difficulty again. She was diagnosed with her second pneumonia in 2 months. She had been having dizzy and fainting spells for the past 6 months or so. We attribute them to being malnourished and dehydrated and so did her ENT. So long story short we saw the swallowing doctor, had the barium swallow test and it turns out that a lot of food and what she is drinking is going to her lungs. Over time she has lost sensation and muscles in her throat and cannot feel that the food and liquid is going into her lungs. I had the doctors rush procedures so that we could get her to do anything they could. So today she just came out of surgery to get a G-tube and get a procedure to stretch her throat, remove scar tissue and fix the flap that keeps food out of her lungs.

What I really want to stress is the necessity of continuing with swallowing therapy even though the cancer is gone. Her swallowing doctor could not stress how important it is that you keep those muscles working and to keep the visits to the swallowing doctor up after treatment. In my moms case it had been over 10 years since she had seen him. So now to get her to a healthy weight again and keep her drinking and eating by mouth as much as we can.

Danielle
Daughter of mother age 69 - 13 years tongue cancer free

Thanks for returning, Danielle! Im sending you a PM so please check it and reply.

You are so correct with your warning to other OC long term survivors. Even at 10+ years post treatments, the patient can still develop late effects from treatments. Aspiration pneumonia is fairly common among those patients who had rads. The throat stretching may have to be repeated a couple times and then every so often to help keep her throat open.

Best wishes to your mother that she can overcome her latest struggle with swallowing.

Hi Danielle,

If you are trying to get your mother to eat and drink again, may I suggest that you do so with the greatest caution.

My husband developed silent aspiration (apirating without any outward signs of choking or coughing) after five or six rounds of dilatation of the esophagus even though he was doing his swallowing exercises daily. He was put on thickened fluids (nectar grade) and still the aspirating continued. The only clue that things were not well was that he kept getting pneumonia. I would say there was a period of six months when he was continuously on antibiotics for the lung infections. Our MO told us that his sputum sample showed bacteria not normally found inside the lungs. The speech and language pathologist who worked with him gave him swallowing strategies but she also told us that he would aspirate on his own saliva and that would eventually catch up with him.

I would suggest that you monitor your mother's condition closely. If she is on thickened fluids then that must be all that she gets. Do not give her ice cream/jello/ice -- the consistency of these will change once they start melting. Be on the lookout for fever, shortness of breath, panting and shivering. These are all signs of the onset of pneumonia.

I know it's very hard for the patient. My husband found it very hard to accept his condition. He would sometimes sneak an unthickened cold drink when I wasn't around. That, of course, did him no good. It was hard on him as it was on me.

Since your mother has a swallowing doctor, make sure she gets to see him regularly and get her swallowing checked. I will keep her in my thoughts.

Danielle -

I think your mother will find the G tube will be the best way to maintain a consistent caloric intake. The increased availability of nutrition should help her body elevate some of the other issues she is probably dealing with. Hopefully, the tube will be a short term necessity and she can move forward without it if the throat stretching and scar tissue removal is successful.

You may want to have her have her thyroid levels checked, (if she received radiation to her throat). Radiation and chemotherapy are a harsh but effective way to eliminate the cancer from our bodies. However, the resulting damage to surrounding tissue and organs may result in other issues long after being declared "cancer free"

Unfortunately, one of the hardest things to deal with when using a G Tube or PEG long term, is missing the act of eating. Sounds a little silly, but, she may miss the taste, feeling, and all the social benefits of sharing a meal with friends and family. (Hopefully, this will not be the case for your mother.)

Good Luck and please be extra vigilant for any signs of aspiration

Thank you for the information. She is very depressed. Gloria we are trying to stay optimistic but there are some things that you mention in your post that are all to familiar to me. According to her swallowing doctor she has so little feeling in her throat that she did not know that she was aspirating. He is now having her after every sip of anything she has to cough to redirect the fluid. There was a time when she had just drank a milkshake and she started turning blue and said she couldn't breathe. It makes sense to me now that she was actually choking in a way. Does this mean she will not be able to drink water? She is having a very difficult time dealing with all of this. Her swallowing doctor wants her to get back to drinking by mouth starting tomorrow. They are keeping her at the hospital for 3 days until they can make sure the G-tube is working effectively. I will keep everybody updated.

Thank you,

Hi Gloria,

Thank you for your post. I am going to keep a close eye on her. She has been eating by mouth since her procedures and surgery 13 years ago so this is all new to us. I will make sure she sees the swallowing doctor regularly from here on out. He said he is not going to paint a rosy path for us for but he does seem optimistic. He is also at a CCC and teaching hospital and I am communicating with him regularly now.

Thank you!
Danielle

Danielle, the question of whether your mother will be able to drink water is best left to the swallowing doctor to answer. If she has to be on thickened fluids, then even the water must be thickened. The rationale behind thickened fluids is, when you splash water on a table, the water goes everywhere, but with thickened fluids, they will stay in a blob. So, in terms of drinking, thickened fluids will have less of a chance of "splashing" into the trachea.

I used to give my husband thickened Gatorade, thickened tea and thickened coffee for the variety. Thickened water was something he did not want at all.

If your mother is drinking water by mouth, please have her drink it in small sips. Too much water at once may mean flooding the trachea which, to tell the truth, would be like drowning. (I am sorry I have to say this, but that's the danger.)

Do check with her swallowing doctor before your mother is discharged with regards to kinds of fluids, kinds of food that she can take in. I understand perfectly why she is having a lot of difficulty dealing with this. I wish I could hold her hand and tell her in so many words. Maybe you could do that on my behalf?

Thank you Gloria. It took a lot of convincing on my part to get my mom to agree to the g-tube. I have a 5 year old son that loves her so dearly and I was watching her wither away before my eyes. I told her we need her to be healthy again. I am hoping and praying that she will get some strength with this....

Danijams!! I can't tell you how happy I am to see you, but doggone it, things like this are happening to many of the old gang. I'm so sorry to hear about your mother's challenges. Big hugs wrapped in love for you and your mother.