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