Hi, I'm new to the forum and I am the wife of a oral cancer pt. My husband after suffering many years with leukoplakia, finally got diagnosed with invasive squamous cell ca of the tongue in Feb. 04. He underwent radiation therepy (38 treatments) and finished June 2nd. He is still experiencing severe pain, blistering of mouth and throat and is back on high doses of narcotics in order to eat. We've tried to find out why after all this time the healing process is so delayed/slow. No one, surgeon, radiation onocologist or family practice Dr. can answer us. He is getting so discouraged with all this, is gaining no weight at all, and is in agony while trying to eat most of the time. Has anyone out there experienced the same thing or know of anyone who has?? We are desperately seeking any info as to why and how long this lasts. They all tell him he should be healed by now and eating well, but his whole course of treatment has been one complication after another. Any info will be appreciated. Thanks Rolanda

Rolanda, welcome to the site. Sorry you had to find us, but perhaps we can assist. There are many disorders of the mouth caused by rad/chemo treatments, from thrush to mucous issues to teeth issues to who knows what. Have the doctors checked for all of the normal things? Did your husband have a feeding tube during rad and is he still on it? By 4 months, I still had some issues, but nothing like you are describing. There has to be something causing it, have you seen a pain management doctor? What are some of the complications your husband experienced? Was he treated at a major cancer center? If not, you might want to visit one to discuss this with specialists that see hundreds of these cases in a year. Hope someone else can give you better information and will pray for relief for your husband.

Hello Rolanda
His problems do seem to be long lasting.
Has he been prescibed the Magic Mouth wash, that helps a little. Or there is another drug called Gelclair a slightly newer and more expensive mouthwash? A lot of time the lack of moisture in the mouth can add to the blistering and discomfort , Salivert a spray moisturiser might help there?
Have him try and take this drink , lots of calories, 1350, and easy to swallow.

One package Carnation Instant breakfast
2 tablespoons Ovaltine
1 tablespoon Carnation powder
1/2 cup whole milk
1/2 cup half and half
2 cups ice cream.
I am surmising from your post that he does not have a feeding tube?
You Doctors telling him "he should " be eating better is of no help ...kick up a fuss till his oncologist listens to you , and if he needs it get him an anti depressant. Dont be passive , it doesn`t work with Doctors.
Let us know how you are doing , we care .
Marica

hi Rolanda,

2 months after rad/chemo i realized i needed help eating because liquids (even milkshakes) just came back out my nose. treatment had destroyed almost all my neck muscles and i could bearly open my mouth. i got help from a speech therapist who had me eating baby food after 3 months of treatment. after 8 months i could almost eat but things still had to be very well chewed. eventually i got my esophagus streatched twice. so after 1 year, i started to eat most things easily... but it really took another year of learning how to eat things before i could eat with confidence.

that maybe an extreeme case, but it shows that with help, most of us can get eating again.

it sounds like your hubby needs help. get the docs on board... he deserves it. he will feel much better as he progress... hopefully the treatment won't last too long.

best wishes,
larryb

Rolanda,
We all heal at different speeds. I was slow to heal myself. I could not swallow much more than water for months, and kept my feeding tube for another 10 months after radiation treatments ended. Like Larry, once I did start trying to eat, I had problems and I eventually discovered that my esophagus had a stricture, and that had to be dilated a couple of times.
Now, a little over 2 years since treatment ended, I feel great and have gained back my lost weight. I still have some swallowing difficulty, but I compensate by eating soups, milk shakes, and stuff that is easy for me to eat.
Please try and get your husband to be patient. I am by nature a very impatient person, but when it came to recovery, I truly took it one day at a time. Things do slowly improve.

Best of luck,
Danny G.

Rolanda,

I know exactly how you feel. My mom also battled about 10 years of luekeplakia and then it turned to SCC of the tongue. She is now almost 8 months post radiation (when she was first diagnosed her ENT only did surgery it wasn't until her recurrance (or so called recurrance) that she received chemo & radiation). My mom after 4 months was also experiencing a lot of pain. We went on a week vacation in August and I could not understand how and why she was in so much pain. Extreme pain where it hurt her to eat and it even disturbed her sleep. She did not have blisters or sores in her mouth but what she did have is dead bone (it does have a techincal term). She went to her ENT when we got back from vacation and he noticed that her bone was exposed and he was about to do another surgery and biopsy but she made a visit to her dentist who noticed she had an infection and he suggested shaving down the bone. After a course of some very strong antibiotics he shaved down the bone and she started to heal quickly. Now she only experiences a small amount of pain and just takes baby aspirin for it. What a relief.

I would definately have your husband see some new Dr's who can help him. I couldn't handle watching my mom in so much pain. We were driving home from vacation and she said if she has to live like this with the horrible pain that she didn't want to live.....but now I can happily say that she eats pretty normal but she has yet to gain back a single pound. Things do get better but it really sounds like he needs somebody to take a look at him that can help him and figure out what is going on...

Take care,
Dani

Hi, wanted to answer some of the questions posed. Tim(my husband)did end up with a feeding tube (peg) that was put in midline in his abdomen that pulled everytime he sat up etc. and that eventually lead us to the ER for removal. I contacted another surgeon who inserted a J tube but that meant being hooked to a pump 14 hrs. a day since he couldn't sleep sitting up in order for the tube to work. After that surgery about a week post op he opened up the whole incision which was grossly infected but no fistula tract to the tube (thank God) and we irrigated and packed that for a week. A few weeks later he woke up one morning and felt a hard warm lump between the tube and the incision and sure enough he ended up in surgery for another infection and not only that, the next day the original incision opened again because it was the source for the newest one. Finally got that healed, finished radiation June 2, and thought ok, not long now since they all indicated that this should now be the road to healing, but no so. He got progressively worse, sicker and sicker while on the tube feedings (2cal, 4 cans a day) He was using morphine thru his tube for the pain and we thought it could be that, so we started weaning everything we could think of till there was nothing left but the tube feeding. In this time period we went to the Fam dr. due to hives that covered his entire backside. They were stumped, didn't show any indication of thrush, but gave him something anyway plus Xanax for pain till they could come up with something besides the morphine. Well I took matters into my own hands and went to the oral surgeon who said it must be the feeding, so we stopped it and in 24 hrs. he could get liquids down. He had the tube pulled a couple of weeks later and things were ok till a couple of months post tx his tongue began to sting and burn. Nerve endings were regenerating and since his tongue had been fryed the most, we were not surprised. But now that has become progressively worse. They gave him demerol for the pain but he was up to 200mg just to eat supper so they put him back on fentanyl patches which he is now up to 75mcg. The rad. onocologist have not been helpful at all, he has used all the usual swish and swallow, topical gels to numb, two courses of prednisone to help decrease the inflammatory process. What hurts the most is the tongue but it there are still blisters in his mouth and throat and while eating, the throat blisters often rupture causing him to choke. His blood work is all normal for hct/hgb to albumin showing that he's getting what he needs but the healing just isn't happening. I'm just at a loss, maybe because of the very high dosage and the length of treatment this will take more than the usual time to heal, but we are now approaching 5 months and the pain is worse- mostly the tongue. I guess maybe like you have said it's time to go see someone who deals in this more. Thanks for all your imput and if any other ideas come, please pass them along. We are both nurses so are not passive when it comes to pushing for things to happen. Rolanda

Hi Rolanda,
What part of Maine are you from? I lived outside of Bangor for 28 years and my mother and sister still live in Pembroke (right outside of Calais).
I hope that your husband starts to turn the corner soon. It does seem like it is taking him much longer to heal, but it is true that we all heal at our own pace. I still have some radiation sores on my tongue and I am 15 months post radiation.
Take care,
Minnie

Dear Rolanda
I am sorry but I dont know of any words of wisdom to give you ..hopefully some of the other guys can help.
Please dont get too dejected, each person heals at his own pace and I am sure things will get better for you soon.
Take care
Marica

Rolnda, I also had rad to the tongue, max dose, you could see stripes where the radiation had hit. However I didn't have the long recovery time your husband is experiencing.

For him to get better then worse sounds like possibly infection again, he seems prone to infections from his history. Definately I'd see another doc with maybe more experience, posibly culture the blisters and see what's going on.

As others have said, we all heal differently, I tend to heal fairly quickly I guess do don't go by me for a length of healing time standard.

Bob