Hello all,
I hope someone here can offer me help . This is my first time posting here. I have tonsillar cancer, have had tumorous tonsils removed, had 33 radiation treatments that ended 4 weeks ago. My life has been pretty miserable throughout the entire process. I have a tremendous amount of tongue pain on the side that was radiated. Also, a lot of pain in the tunor removal area and left side of throat - whereever the radiation was. But most importantly - in the tongue. I have lost 40 lbs. due to being unable to eat without major discomfort. I am hungry all the time but I just can't bear more than a few bites.

I am on round the clock pain meds which help, and lidocaine is swished at least 20 x a day just to get by. I feel like there is no end. I am sure it is getting worse. My ENT and rad. oncologist just keep telling to be patient. I could cry if I hear that again! This has turned my life upside down. The oncologist that did my Tx told me that the tonge was "damaged" by the radiation Tx. It is now swollen and any movement hurts. I am up most nights nursing this mouth. My question is: has any one had a similar experience? Will this ever get better? Any treatment suggestions other than just wait? Do you think the continual use of the lidocaine (it is in Majic Mouthwash) is detrimental or damaging?

Thank you all so much for your time and patience hearing my troublesome story. I am a father of 2 and my wife flys for an airline so I have to care for my kids, run a business and it is just plain hard.

Sincerely,
Dennis J. Hansen
[email protected]

It doesn't sound like you have a G tube to help you get nutrition so I suspect you have to use the lidocaine just to get any calories down. But if the pain is as bad as you say, you may need some other kind of pain medication as well. Are you taking anythinmg for your pain other than the lidocaine rinse?

We all differ in how much pain we have and how long it takes to recover but being in chronic pain makes everything harder and there really is no good reason for it at your stage of recovery they should be prescribing medicine that can control it.

Nelie

Hi Nelie - I am on oxycodone 30mg - 4 x a day. A lot of meds. I did not get the peg, so I am forcing food and drinking Boost as often as I can.

Dennis

I assume you have been checked to be sure none of this is due to thrush?

Dennis . . . I too had tonsillar cancer, radical neck dissection, 34 radiation treatments completed January 4, 2008. I continue to heal as you will. I am very surprised your doctor did not recommend G tube or did he? I could not have gotten through treatments without it - I still lost around 20 lbs. and am slowly making some gains now that it is out and eating again ( not like the old days but making progress ). I also had a morphine patch for pain during last 4 weeks of radiation treatments. Never really knew it was there but I do believe it too the edge off. I spent many a night swishing magic mouth wash and putting hydrocodine down the tube. As Nelie says, everyone is different in how they react to pain, etc. but ask your doctor about the patch. They started me on 25mg and gradually increased to 100 and then backed it down same way when I was through with treatments. No withdrawal, etc.

When you done with radiation, friends and family all think you are well. Not so, you are so thankful to be done wiht that but it like a gas tank. You're now full of radiation which takes time to burn its way out of your system. Good luck on all fronts!

Hello Dennis,
Welcome!
My mom had radiation to her tongue, both IMRT and Brachytherapy. Before I start, her pain has lessened quite a bit, but it is still present at times. She too is on oxycodone and uses the lidocaine--which she dabs on her finger and rubs around on her tongue....especially as she is eating. The one food that she can usually eat all the time is Campbell's Double Noodle Chicken Noodle, apparently the noodles slide down easier. Mom was also given Neurontin, fentayl patch, and effexor for pain. She seems to experience the most pain when her tongue is ...can't recall the term....'slothing' off, kind of sheds itself as a snake does. She still gets the ulcerated sores--which we use sodium chloride for--from the pharmacy. Also, she drinks the ensure plus, it carries approx 120 more calories. She also does not have afeeding tube, though, I do wish that she did as I have learned here that with proper nutrition your tongue will heal that much faster...less pain!
I'm sure that more will come to me, I'll post as soon as it does.
Overall, she is much more comfortable now than she was in the fall and winter.

Dennis,

I also did not have the G tube but what I found very useful was Carnation Instant Breakfast VHC which has 560 cals in each 8 oz can so you don't have to swallow as many cans to get the same amount of calories. At around 3 weeks post I started drinking 3000 cals each day and I actually started to feel better and stronger. Virtually no one is feeling good at 4 weeks post Tx and the recovery we all experience is extremely slow lasting well over a year so don't expect to bounce back like you are recovering from a bad cold.

I didn't want the tube and opted for what I could force down. It's all liguid because I have no teeth and a very sore tongue or what's left of it. They removed part of it and I had a left neck dissection too. I lost a total of 70 lbs and looked like a fish that had been out of the water for 2 weeks. LOL I have put back 10 lbs and it's from VHC , Ensure and my blender. The pain pills are just sitting in the cabinet. You will make it , but have doubts about the pain ever leaving. I am still waiting for mine to leave. All I can really say is good luck and face this stuff, pain and all headon. You will win .

THANK YOU ALL FOR YOU YOUR RESPONSES - THEY ARE VERY HELPFULL!

I guess I have to be patient. It has been about 4 weeks since radiation ended. It seems to me that the pain on my tongue and in the area where the tumor was removed has become worse. Maybe it is my imagination. One of the things my ENT said was that my tongue was rubbing against my teeth and causing an abrasion. I have since had dentist smooth out teeth edges, but is still hurts after 2 weeks of that being done. The rad oncologist told me that the steriods in the magic mouthwash would eventually make the pain go away. So I am swishing and swallowing faithfully as requested. I have become addicted to the oxycodone and need more now than before to achieve same result.

The thoughts of having to bear this for a year(s) is difficult to swallow (no pun intended). Doc told me that the sense of tase would return at a rate of 1 year for every 1000 rads of radiations. So 7 more years without taste! Good Lord, this is hard. Don't get me wrong, I thank God that the report from the petScan was excellent - no cancer left! I know this will be all worth it in the end.

Ha anyone heard of a similar formula for the return of taste? Also, I had to have a molar removed pre rad tx and wow, it is really hard to chew with the large opening where tooth is missing. Any one have that issue? Maybe a bridge would help.

Thank you all so much, you are so very kind to take the time to help those that aresuffering in this fashion.

Dennis Hansen

I was never told it would take that long to recover taste. RO just told me it would be over a yr. I can usually taste the 1st that goes in my mouth and after that, it could be hog food and I wouldn't know. LOL