Just got barium swallow results this morning. Husband is pretty much aspirating everything. So no more food or even water...they are putting him on an NG tube until he is strong enough for a Peg tube.

I guess a part of me is glad we didn't know all these issues were in our future. We were just happy that the treatment was a success as far as wiping out the cancer.

Anita

Anita,

This is difficult to read....Yes, we are warned about treatment side effects, but when they surface, it is difficult to accept. So much energy is spent on getting through treatment and killing the cancer, then facing these serious side effects feels like post traumatic stress.

I see that your husband underwent recent prostatectomy. Coincidently, that was the case with my husband, one year prior to oral Ca diagnosis. He now faces HBOT (hyperbaric oxygen therapy) due to dental complications.

As you say, we are grateful for the good years. Aside from eating/swallowing is your husband stable?

Lottie

Sorry sorry sorry.

Did he have any swallowing problems before this or did this come all of a sudden?

Anita and Lottie,

It is difficult I know but please understand a couple of things. Without treatment death is imminent. With treatment these after effects are still only a possibility and many don't suffer from them.

Lottie, your comment about PTSD is right on! Very insightful of you. The recurring cycle of clearing the oxidative stress and having it resurface is one theory of how "this" all becomes chronic. I guarantee having things go along very smoothly and hitting a speed bump like osteoradionecrosis or dental issues or neuromuscular issues is exactly what makes the recovery seem like there never was one. Enjoy the good days especially because of this.

I am truly sorry for what you are dealing with and hoping and praying for many good times through it all. Never lose focus of the great intervals of life! Never give up.

Ed

hello digtex,

I am only 4 years out and clear. But i do have a couple of things to add. I have developed pain in my neck due to fibrosis, it is 4 on 10 now but going in the wrong direction. I will go to a pain specialist at UCI in Southern CA in a few weeks and will post results. I also still aspirate food to my nose, not a significant amount, just a bit. The weight thing gives me a chuckle, let me explain. I lost about 45 lbs during treatment, I was very fit before. I wanted to get the weight back on. I call a a weightlifting supplement place. They turned me on to "Russian Bear 5000"
. 5000 cal a day! i used it for a while then switched to a product called metrex, it is about 1000 cal. Over the 4 years since TX I have not gained much weight and struggle to stay over 160 and I eat alot of food/cal per day

Steve

Hello friends,
Ed was kind enough to send me a private message inquiring about my situation and after reading this thread again, I felt that I should respond here as well. First, after 12 years, I am still one of the lucky ones. I feel good and I still travel, work and play golf. I can still eat (ate steak in NYC last week as well as a lobster roll at a street food fair and pizza). I lost 10 pounds when I became ill last spring and cannot seem to regain it, but I look normal, just thinner than I used to be. The HBO treatments caused my eyesight to become terrible due to ripening of my cataracts. The good news: I got cataract surgery and have the best distance vision that I have had since childhood, and Medicare paid for it.
I still have exposed bone where my molar came out but the tissue around it is healthy. I still tend to aspirate thin liquids but mostly only drink water anyway.
The speech paths at MDACC want me to enroll in swallow boot camp but so far I have not done so. Eating has gotten a little more difficult for me but I can still do it if I have water to wash it down. Of course washing food down with water can lead to more aspiration. They recommended food thickener to be added to liquids. I do use it when I drink Boost but don't like it in water.
The dental onc. and H&N surgeon are doing a wait and see on my jaw, not wanting to subject me to a mandiblulectomy unless really necessary. So, bottom line: I am a little skinny, and far from perfect, but I can still eat out with others, etc. without it being obvious that I have difficulties. I am happy to be alive, feeling well and able to work and play, and to eat.
Ed, you have had it really rough. No need to feel badly for me who hasn't really had it so bad.
Good luck to all and thank you for your interest.

Danny,

I have put 30-35 lbs back and look very normal, just a bit or a lot older and very thin. Sometimes it takes a lot of work to get back to your college weight. I just came at it throughout the back door, you might say. Finally at 150 and the waist is shrinking from the fat gained eating all those bad things that taste so good. Ribs, ribs, sausage, ribs, ribeye cheesesteaks, ribs, roasted pork, smoked pork, ribs...LOL

Ed

[quote]I still have exposed bone where my molar came out but the tissue around it is healthy.[/quote]Hello, I am just 4 months post-tx and have had this condition too. It has been nearly six weeks and the dentist just says "looks good", come back in two weeks for a followup. The exposed part, maybe 5mm, seems to move a bit and tissue covers up the original exposed part. So, in a way improving but also moving so net zero.

He states the bone demineralizes and fades back which seems to be occurring but why does does new bone become exposed?

It causes a lot of pain up and down the side of my face and up into my skull. Do I just live with this or find a specialist cancer dentist?

He has been choking on food for a few years - but this got suddenly very very bad right after the prostatectomy. In fact, we were driving home (6 hours) from prostatectomy surgery and he started going downhill - by the time we got home, I had to call an ambulance.

He has had 2 bouts of much more minor pneumonia in the last few months - too bad the doctors (and us) didn't pay more attention to the cause (aspiration) on those earlier occasions.

Hopital doctor told me last night that they see his issues, usually at 20 years out for H&N patients, not his 10 years out.

Donfoo,
I have found that ordinary dentists often are not very familiar with the effects of oral cancer treatments and all that it entails. I would suggest finding a dental oncologist at a CCC. I would assume that such a person is available in the Bay Area. I have been seeing my dental onc. at MDACC on a regular basis and he is monitoring the situation.
Good luck.