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

We all can recover differently but that 1 year for 1000 rads and taking 7 years to recover your taste is hogwash. Talk to me 1 year from now and I guarantee you'll agree he's crazy.

When I told my nephew that everything tastes like cardboard... he figured depending on the cook this could be an improvement!! So I told my sister and she smacked him.

It is true that you have to be patient, I am not quite a year out of the rads and all of a sudden I notice recovered taste for some food that is sustained and can all of a sudden tolerate other things.

Salami (a good italian) tastes like salami again!! It is a slow process however.

M

Dennis

I echo the recommendation for a Fentanyl patch (synthetic morphine)that is "...used to treat "breakthrough" cancer pain that is not controlled by other medicines." You are already taking enough hydrocodeine to qualify. I found the magic mouthwash basically worthless. Even though my mouth and tongue pain was nowhere near as bad or severe as you, I went to TWO patches every two days. It really made a big difference not to have to swallow so many pain pills plus since I also did not have a PEG, take in calories and nutrition. Yes, I did need to be weaned off of them. I just saw my radiation oncologist this week and when I was thanking him for going out of his way to limit the exposure of crucial swallowing muscles from the radiation field, he responded that in his experience, his very aggressive pain control approach (he regularly gets "audited" by the DEA and patiently explains that cancer patients are not junkies)contributes a lot by letting patients swallow throughout treatment. I ended up getting all my pain prescriptions filled at the hospital pharmacy after my local Safeway and other pharmacies would only fill part of each prescription (30 out of 200) due to "DEA" guidelines.
GOOD LUCK
PS the taste return timeline of 7 years does not comport with what my ENT, medical oncologist, and radiologist have told me. They say 18 months is average but some folks take three years. I still have zero taste six months out.

I am really glad I posted this about the timeline for taste return. When my ENT told me 7 yrs. I was very dissapointed. I pray that mine returns this year. Regarding the pain pills - my only apprehension is the exit strategy - that is - the detox. I know that the pain will lessen and it will be time to pay the piper. I have had to withdraw from long opiate stints in the past.

Fortunately, I am the owner of a drug and alcohol detoxification center and the use of Subutex /Suboxone is truly a blessing from God. But I have to wait for the pain to subside before even thinking detox. I hate the side effects from the oxycodone; contipation, dulled feelings, tiredness etc.

The other painful area I have is the hole where the concerous mass was removed (left tonsil area). Was the size of a golf ball, now after 5 months, 1/2 that size. It was the bullseye for the radiation. I agree that the magic mouthwash accomplishes one thing: temporary relief via lidocaine. The doc says the steroid in it will help eliminate the pain. I wonder if using lidocaine too much is bad for the healing process? I am using it far more that prescribed. I helps me get through meals / waking up in middle of night.

Thank you all for your insight and knowledge. If anyone wants any info at all re: kicking pain killers / opiates (or any other substance for that matter) - I am an expert.

Regards,
Dennis

Dennis:

Remember everyone is different. My taste started to return at about 3 months after treatment ended. It has steadily gotten better as time has gone on. Im now 8 months out and can taste most things close to what they should taste like.

There are a few things that are absolutely horrible and some are painful like soda. Be careful with trying that one.

It will get better, but unfortunately it takes a long time. Best of luck in your recovery.

Dennis
.....on a more serious note.... In addition to individual response it also depends what was irradiated and how big the radiated volume was. In my case I had SCC on my anterior tongue on the left side and, that was the focus for the radiation. Given the location of the taste receptors and the radiation field, I was expecting a loss of taste and I was hoping that it was not permanent. This turned out to be true, much of the taste is back and it is still improving after nearly one year. Therefore, if the mobile tongue does not get the highest rad dosage it stands to reason that less taste is lost and or returns more fully on average.

I still have problems with carbonated beverages like Christine and the taste for a good steak as not returned. However, what is true today may not longer apply you need to experiment.

Still, taste or no taste, I am also happy to be here.

M

Since about my 16th month post Tx I have been able to eat and drink anything and taste it almost as I did before. I can drink carbonated drinks, eat popcorn and shelled peasnuts, have hot sauce, eat peanut butter and jelly sandwiches, eat food samples at stores and not have to follow them w/ liquid, etc. During recovery I didn't think any of those would ever be possible again but keep the faith.

DennisH, I noticed on your message that you had both tonsils removed. Did both have scc or just the one? On June 10,2008 I just had a tonsillectomy and adnoidectomy with additional tissue removed as well. I still can't swallow hardly anything yet and the pain in my ear is like a nail had been nailed in my left ear and into the inside of my throat. I have Kadian 50 mg, (extended release morphine) which I take every 12 hrs and Hydromophone to use between for breakthrough pain for my back so I already had pain meds before I had surgery or cancer. But it hardly will even dull the pain in my ear and throat. Did you use the lidocane after your tonsil surgery? If so, how long did you have to wait before you used it post surgery? My ENT didn't give me anything when I left the hospital on the June 13th. I was wondering if it would be okay for me to use the lidocane (my pcp gave me the lidocane before I saw and ENT). It sure sounds like you have your hands full with all you are doing and dealing with cancer too. And since you have already had your radiation treatments you are well on your way to recovery! That is wonderful. I haven't started radiation yet. Good luck and I will e-mail you one the other. Thank you, Angel

Dennis, why not ask one of your Drs for an ambien prescription and cut back on the drugs. I did and it made a big difference at night. At present I quit taking pain meds because of constipation. Think I would rather have the pain. LOL

It has been since the fall of 1999 when I finished my radiation on my tongue and have become really creative in eating again. If we go out, I order clear or strained soup. Alot of the restaurants are very obliging in straining it. As for eating at home...EVERYTHING goes into my blender...be it pizza (a little water added to make the dough soggy) and almost everything I used to eat goes down my throat easier with Ranch dressing and throw some salad in there too......My false teeth bother me where they operated and recreated my "half-tongue" now so I do not wear them at home or to eat...only at restaurants. Your sense of taste will return (I have a quarter size of taste buds left) and I savor everything I can taste and enjoy. Considering the alternative, the human body, mind and spirit is amazing. It takes time for it all to come back so please be patient....I will keep you in my prayers.....Flo

Flo,

Glad to see your Tx killed the cancer that would have killed you. Sounds like you had a rough time but it sure beats that alternative.