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Radiation for tongue cancer

white42876's picture
white42876
Posts: 20
Joined: Nov 2009

My dad will be doing radiation for his tongue cancer and he and my mom are scared out of their mind. My mom is terribly afraid that my dad won't be able to eat anything at all, is this true? They are going to put in a feeding tube so he will be able to get nourishment but he still needs to be using his tongue so he won't have swallowing problems later right? Anyway, if you could please share your experience with radiation and tell us what we should expect. How bad are the sores in your mouth and can you eat or would you even want to during treatment? Also, anyone have to have any or all of their teeth pulled (even if they were in good shape) before the radiation? Any damage done to the teeth or the gums that didn't have to be pulled? Thanks for any help!

Thinking positive!
Lisa

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Regarding dental care, I have read of any number of folks who required removal of their teeth prior to radiation for whatever reason. This was not the case in my particular circumstances and I know of many others who did not have to lose their teeth.

What WAS required was the most thorough cleaning of my teeth that I have ever experienced. My wisdom teeth were removed as a safeguard (they were pointed in odd directions, apparently) along with one molar. Otherwise, I was good to go. The cleaning was essential and, as I mention above, I know of others who did require complete removal.

You will discover that regardless of what experiences you read of, what advice you get, cancer has both its generalities and its specifics. This is one of those areas.

I would strongly advise, however, that dad go to the dentist, let him know what is coming up, and let the dentist do what he can to save the situation if possible.

I am not sure why you say he will still be needing to use his tongue and so will not even attempt a guess. Sores do indeed develop and as far as I know, the same old stuff is used even today to alleviate some of that, largely to minimal effect, to be honest, things called Miracle Wash and Magic Wash and Clack, which are pretty much the same concoctions of Lidocain (sp?) and something sweet and syrupy to help get it down, as far as I can tell.

They do not occur at the beginning of rads, but once they do pop up, they tend to hang around for awhile. You need to remember that rads do not stop cooking at the end of the last treatment, but continue to do their job for weeks after. Please remember that, and please, when the time comes, remind dad of that: all of this WILL pass, but it will not simply stop on the last day of treatment.

There are a number of tubes available for nutritional purposes, and I only know about one of them. I have a G Tube, a PEG tube, and this is inserted directly into the stomach, after which it is no problem at all,requiring minimal maintenance of the tube (the likely protein stuff that will be poured down it, if this is his type of tube, is probably going to be Jevity or something of the sort, and these tend to turn to cement in the tube if the tube is not properly flushed after each 'feeding'). Additionally, this particular tube requires a wound, of course, a small hole for the tube to go through the skin to get to the stomach. This must be looked after rather religiously to avoid infection and the like, for the duration of its stay.

But that maintenance, Lisa, is really rather modest and something that dad can do on his own, for the most part, with some occasional help, perhaps from a wound care nurse or whomever was responsible for inserting it.

With radiation, Lisa, there is always the possibility of damage to teeth and gums, and, in particular, as a long-term bummer, to the saliva glands.

To be blunt, the saliva glands can be toasted, depending on the target area and extent of radiation. In my case, I took two shots, mostly to the stomach, every morning for seven weeks, 30 minutes prior to rads, of something called Amifostene (sp?) to try to save my glands. The research available at that time was rather iffy on the efficacy of this drug, and it IS an expensive one (my insurance covered it). I can't say that it worked, but I do have salivary action.

Other damage to the teeth/gums: I am not so sure about the gums, but I have experienced, and others have concurred with this, that it feels like your teeth can actually chip away, can break off, after rads. I do not mean large chunks, but that I can often find small particles of bone in my mouth, which I assume are from the rads. To be honest, this went away over time, but was there for about a year.

Finally, to the first of your questions, eating is problematic. At first, dad should do well. After a point, perhaps into the third week, depending on the extent of his therapy, he will get the sores, he will not want to eat, his taste buds may get funky on him, and he may lose his appetite.

I would encourage you to encourage him to continue eating, even if what he eats is different. Instead of steak and potatoes, maybe he goes with a broth and tea, or with ice cream. My nutritionist insisted that the best thing for me was yogurt, as it was easy to down (it was) and also very good for the gastro tract.

Others suggest smoothies (I did those too, over time), shakes, tea, and an assortment of other things that may be off the beaten path for dad, but good for him nonetheless.

If this sounds bleak, I apologize. I made it through and did not find it all that arduous an experience (in hindsight). It IS a tough road, but it is one that dad can walk.

Best wishes to dad and his family.

Hope and Humor!

Take care,

Joe

white42876's picture
white42876
Posts: 20
Joined: Nov 2009

Thanks to all of you for responding to my questions. I know it helps my mom and dad to know there are people out there who have gone down the same path as they are about to. I hope and pray the treatment will go as smoothly as possible and the side effects will be minimal. I will keep you updated on how he is doing in the coming months! And of course will be asking more questions along the way!

Joe, just wanted to let you know that while reading your "about me" section to my mom the other day we laughed our butts off! And boy did we need that! :)

Thinking positive!
Lisa

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Thank you, Lisa :). Always happy to learn that I helped someone to smile, especially during this time of great stress to you and your family.

(If you got all the way through it, by the way, including the blog entries, some universities are now allowing that as a substitute for reading War and Peace! :))

Hope and Humor!

Take care,

Joe

robdad
Posts: 3
Joined: Apr 2009

I too went through this. Stage IV SCC, base of tongue, with both side lymph nodes.7 Cisplatin and 35 rads Last treatment was 7/2/09. The most important things I can tell you as far as my case went is to make sure you get the feeding tube beforehand and make arrangements for a suction machine for the mucous problem that will arise. I didn't think I needed the suction until it was too late. When I did get it it was a lifesaver.At 4 1/2
months I've got the tube removed and am eating as much as I can. Lost 35 lbs but am holding steady. Its a slow process but a doable one. Best of luck to you!!
Dave H

white42876's picture
white42876
Posts: 20
Joined: Nov 2009

Thank you for all the info! My dad had the feeding tube put in on the 23rd so that is taken care of....yeah! Please tell me where he can get a suction machine? Do we need to ask the doctors for one or do we need to go someplace else like a medical supply store? I hope you were able to enjoy all the yummy foods for turkey day!!! Again, thanks for the info!

Thinking positive!

Lisa

fishingirl's picture
fishingirl
Posts: 188
Joined: Nov 2009

Wow! Do you EVER sound like a lovely person. So helpfull and compassionate. I just joined this website as I have just completed radiation treatments for the same cancer as you Dad did. Thanks for being such a wonderful person. There still are some kind people around:)

Snook
Posts: 1
Joined: Nov 2009

I would take time out every few hours and do nothing but swallow water - I feel to this day that helped me keep the ability to swallow. I did not have a peg.
As far as teeth go it was explained to me before treatment that it varies from person to person as to the extent of damage incured to the teeth by radiation treatment
I had to have all my lowers removed due to the radiation damage
Do not hesitate to pump doctors for information about treatments, side effects, adverse reactions, and complications
Wishing your dad and you all the best!
Gregg

jeb54321
Posts: 22
Joined: Sep 2009

First off, good luck with the treatment.

There is no doubt my doctors were delighted and surprised with my reaction to treatment and my recovery.

Yes, there was a point where I stopped eating, but mostly it was because I lost all sense of taste, and since the PEG tube had been but in as a precaution (just in case) it was easier to rely on the tube than to try to eat. As a result, I'm now struggling to get back to eating solid food and get rid of the tube.

BUT, if I didn't suffer from nausea, I don't believe there was much physically that would have kept me from eating throughout the process. It was more of a choice that I stopped swallowing, and there was probably only a brief time when I was concerned about physical pain while swallowing. My biggest struggle was nausea.

The bottom line is that everyone reacts differently, and the key is close contact with your doctors to manage the side effects. I almost feel as if I would have preferred pain to nausea, because pain management is a lot more mature than management of nausea, which still plagues me now.

SASH's picture
SASH
Posts: 283
Joined: Apr 2006

A few of my thoughts.

I had 12 teeth removed prior to radiation. 4 wisdom and 8 molars this was based upon the location and amount of radiation. 1 wisdom tooth was impacted and only had a small amount of decay on it. All others were perfectly fine, but they wanted to protect my lower jaw for the future. Since I have finished treatment, I have had some cavities, and 3 teeth have come out since.

I wasn't able to eat solid food for during treatment, but was able to swallow liquid nutrition. By the end of radiation and for a couple of months after I was still having problems swallowing so I was lucky when I was able to swallow a glass of Gatorade a day.

Ask the doctor for a prescription for magic mix or magic mouthwash which will help numb his mouth when he is eating or swallowing.

Once he has the sores, watch out for food with high sodium as this will cause pain and burning.

Ask the doctor about soaps, shampoos, deodorant, lotions, etc as there are some that are detrimental to treatment.

A positive attitude and sense of humor really helped me get through treatment.

pk's picture
pk
Posts: 192
Joined: Aug 2009

Your dad will not be able to eat during a portion of his treatment - thus the feeding tube which is nothing to be afraid of. He will be happy he has it. Drink water even if it tastes terrible and hurts to go down. My husband is 6 weeks out, used a feeding tube for about 4 weeks, drank water and is now pretty much eating and supplementing with a couple of Boosts a day. Feeding tube was pulled last week. PK

SASH's picture
SASH
Posts: 283
Joined: Apr 2006

Of course I was right.

denistd's picture
denistd
Posts: 508
Joined: Apr 2009

Lisa, I am 5 months out from my treatments, I had 35 radiation session s and 3 chemo's. When it was all over I developed toothache in two wisdom teeth. I went to see my oncologist and he arranged for me to have hyperbaric oxygen treatments. I went for 20 consecutive days for 2 hours a day, It's a cylinder that you lie down in, tv on if you want it. After the twenty sessions the two teeth were pulled and then back to the hyperbaric chamber for 10 days in the cylinder. No problems with my teeth or gums or jawbone at the moment, I truly recommend post treatment HBO's. Denis

hcoburn
Posts: 6
Joined: Jul 2010

Sash,
What can I tell my daughter other than standing outside in the wind, on how to handle her mucus problem
The surgeons removed her entire tongue and ALL the nodes on both sides of her neck. that happened August 4th. since then she has produced at least a barrel full of mucus. She will start chemo and radiation in about two weeks, three chemos and 36 rads. Is there anything we can use ti thin the mucus or at least slow down its productio.
I have read many of your posts and value your opinions.
hcoburn

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

white42876- my heart goes out to you. I had nasopharyngeal taken care of earlier this year, and full head and neck treatement of rad WHILE getting chemo. There was "scalding" on my tongue, and the mouth sores extended all the way to my lower lip. Hopefully, your Dad's symptoms won't be as bad.
Sash is right- 10 months after my feeding tube was put in, I've still got it, and have no plans to get it out until after my next PetScan in early 2010. And I haven't used it since early-April. It's not a big deal having a feeding tube. I used the 4.0 "formula" four times a day to get all the nutrition I needed. It was either that, or the seven/day 1.2 formula, and I could tolerate the 4.0. It did just fine for me.
Make sure your Dad doesn't hesitate to get all the meds he needs to get thru this. On my very first Oncologist visit, I was told I would be on Morphine, which I was for a little over a month. And, I would typically take two 1/2-tablets of Xanax every day- one of them within an hour of my radiation session. Frankly, the Morphine did not agree with me, and even scared me some, but it did help me get thru the worst of it. Hydrocodone did the most good- including the getting-off of Morphine useage. Thing is, your Dad might have the darkest of thoughts about his future, and modern medicine does know this- and will do what is necessary to see him thru it.
Has he seen a Periodontist? My radiation Dr. nixed the pulling of a tooth, post-treatment, which meant I had to have a root canal. The magic mouthwash does help a lot. I have bone that was protruding out of my gums near both sides of my back and lower teeth, and that's why I had to see the Periodontist, who ground-away the bone, and let the gum around such collapse over the problem areas. I will be using a Sodium Flouride toothpaste for some time to come, but that's way down the road for your Dad.
You have my prayers
K Cass

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