Sqaumous Cell Of The Tonsil -- Still Not Eating

My husband (age 48) was diagnosed in January with tonsil cancer on the left side with two cancerous nodes, also on the left side.  He had 6 and 1/2 weeks of radiation coupled with 3 rounds of cisplatin.  He finished his treatment on May 9.  He got a his feeding tube about half way through treatment (sometime in March), but still is not eating orally.  He has suffered terribly through treatment, and only recently has begun to feel some better.  Now the big hurdle is learning to eat again.  He admits it's not really painful anymore; now it's more a mental anxiety about choking, throwing up, etc.  Has anyone experienced such a hard time?  Please let me know your thoughts.  It is really tough.

I have also endured the issues of regaining my ability to eat after treatment.  What worked for me was swallowing therapy, more specific, vital stim therapy.  Check it out on the web and through you hospital. 

Good Luck,

smjubo

 

On 8/17/2007 Sarah B. wrote:

My husband (age 48) was diagnosed in January with tonsil cancer on the left side with two cancerous nodes, also on the left side.  He had 6 and 1/2 weeks of radiation coupled with 3 rounds of cisplatin.  He finished his treatment on May 9.  He got a his feeding tube about half way through treatment (sometime in March), but still is not eating orally.  He has suffered terribly through treatment, and only recently has begun to feel some better.  Now the big hurdle is learning to eat again.  He admits it's not really painful anymore; now it's more a mental anxiety about choking, throwing up, etc.  Has anyone experienced such a hard time?  Please let me know your thoughts.  It is really tough.

I recently finished Radiation ( about 3 weeks ago) It has been tough. You are not alone. I escaped the feeding tube although MDA seemed to try to preesure me into it. I wasnt prepared though for the after the radiation effect. It has been harded afterwards than during radiation. I still cannot taste and swallowing is difficult. My rock has been my wife. I'm sure your husband feels the same way. The key for you is to encourage him to hand in there cause in a few months, hopefuuly, this will all be over. In my case I have been extremely hard to live with. It's pretty easy to feel sorry for yourselg cause you cant taste anything. In my situation I am a big guy anyway and eating and drinking has been the mainstay of our lives. I think you have to to work to find other "pleasures". I still havnt found mine but, for what is worth that is my advice. Once again, hang in there with him and give him space to make his own decisions without tring to pressure him into eating etc. Better yet, just encourage him......

Joe

I`m 20 months out from a Stage IV Tonsil/Lymphnode Cancer. I have been almost impossible to live with. I have almost no saliva and maybe 10% taste on one side of my tongue. Taste buds were burned away permanently. The saliva issue I`m dealing with now, but the taste is still very difficult. I too won`t attempt to swallow most foods especially meats. We basically forgot how to eat and when we do finally attempt it we don`t taste it. The saliva loss has alot to do with swallowing and taste also.

Here are a few things I survive on and most I wouldn`t touch prior to cancer. Some of these will not be tolerated until you are a few more months out from treatment. I continued to drink Ensure (strawberry plus only) for months......

I eat: Entenmanns pound cake with chocolate milk, ovaltine, peanut butter out of jar, cheerios w/blueberries, rice krispies w/strawberries inside box, strawberries, watermelon with lots of salt, canteloupe with lots of salt, cucumber with salt, Wendys chili only with oyster crackers, pasta from Olive Garden with olive oil and tomatoes, pasta roni in box with olive oil/garlic, Entenmanns lemon cake with milk, Stouffers chicken ala king (lots), Pepperidge Farm pot pie, Dairy Queen strawberry sundae, Wendys frosty, Wendys baked potato with lots of sour cream, biscuits and milk gravy, pancake with lots of syrup, packs of oatmeal with toast from oven.

Hope this helps....not real healthy, but we have to eat something. I`ve spent tons of money on food trying to find things I can eat. These work best.

Ron

the problem may not be in his mind, it could be real. Ask your doctor to order a swallow test. This is a painless test. My husband had complications with his epiglotus not closing correctly after treatment, which was solved with speech therapy. and a friend of ours had to have ballooning of his esophagus in order to enlarge it as it was closed from scar tissue......from the internal burning. If there is a problem like one of these, time alone won't solve.....good luck and many prayers for you.

I also have a swallowing problem, as I have had a PEG tube ever since April which was 2 or 3 weeks into radiation, and have had nothing to eat or drink by mouth since then.

I had a Modified Barium Swallow tests on Monday, and presume that swallowing therapy will commence soon. Any tips on the swallowing therapy. you can answer me at esripvw at aol dot com. I hope to hear from you. I always forget to visit this message board.

An update to my husband -- Stage 4 SCC tonsil cancer -- he had a modified neck dissection in November 2007, residual tissue and nodes were removed, and no traces of cancer were found.  He had a fantastic head and neck surgeon at MD Anderson -- Dr. Ed Diaz.  He still struggles with eating solid foods; can really only manage liquids.  Foods still do not taste good, even though he finished radiation 8 months ago.  We were totally not prepared for the long recovery involved.  His spirits are better now, and he has returned to work.  His zest and appreciation for life have made him a much finer individual.  We have grown together as a couple as a result.