Loss of sense of taste

I am a 66 year old man who finished radiation in May 2007 for stage IV tonsil cancer. All the PETs and CTs since are negative. That's the good news. The bad news is that, owing to the 3 8-hour sessions of Chemotherapy and the 35 sessions of radiation, I have not had a meal since May 2007, and must take all my nutrition through a PEG tube. I can drink a bit, and do, but must take quite small bites of anything as the esophagus remains contracted despite about 10 endoscopies to dilate it. But even if I could eat, I have no sense of taste, and my salivary glands are virtually nonexistant.

Anyone been here before, and regained his or her sense of taste or salivary glands? I am not thrilled with the thought of never eating again.

I'm sorry that you are still having such problems...........we have alot more information on the head and neck part of the message board........it is far more active!!  Personally, I have had no problems, but I know that there are many others who have.  Check out their posts!!!

Good luck..........Steph

Rip,

      As Steph mentioned, there is more activity on the main Head and Neck board if you wish to view that one. You might get more replies there.

      One thing that popped into my head after reading your post is Lymphodema. Not knowing everything that you have been thru and it is allot already. I am wondering if you had a radical neck disection and many lymphnodes removed ?

      It was awhile before I was experencing prolems with my neck and throat after my radiation treatments were done. I had a radical neck disection with roughly 30 lymphnodes removed. If the lymph system isn't working properly for us, we swell and get tight in the neck and throat.

     What I learned from the Cancer Physical Therapist is that the swelling on the outside of our necks also can cause the narrowing of the throat. If this isn't addressed we have problems swallowing. She showed me a simple massage that can be done in roughly 5 minutes and helps with the swelling and will last for a few hours and may need to be repeated after 4-6 hours depending on your activities during the day.

     I wasn't told before hand about this side effect until I questioned my Radiation Oncologist a few months after treatment about the swelling and tightness of my neck. I think allot of the Doctors are so concerned about getting the cancer out of us, that they sometimes over look telling us about other things until they pop up in our questions.

     Just throwing this out there for you and anyone else to think about.

     My Best to You and Everyone Here

Rip,

       I forgot to answer your other question about taste and saliva.

       Yes, my taste has returned to about 50-60 % and currently have no saliva except when I chew some surgar free gum. For some reason my mouth stays moist while I'm chewing the gum so I can hold  longer conversation. But once I remove the gum, my mouth becomes a desert once again.

       My Best to You and Everyone Here