CancerCompass message board discussion started by sarahbear on 7/3/2008 http://www.cancercompass.com/message-board/message/all,25706,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi everyone.This is my first post to the message board after many months of reading.  My husband is eight weeks out of radiation/erbitux treatment for tonsil cancer.  The positive is that he had a clean post treatmnet PET scan.  He had a PEG tube (his lifeline) in 3 week of treatment and remains on today.  He struggles to take water or any liquid and usually tries once every 3 days.  After each try he feels the backlash in pain, coughing, thick mucas, etc.  He is really miserable and doesn't see any end in sight and is getting depressed about the future.  I have suggessted a few things: try to do something small each day that provides joy, like gardening; perhaps requesting a weekly visiting nurse to help him regain his swallowing funcion and minimzing the pain, and maybe getting a doctors appt sooner than his next monthly visit.  I am there for him and want to help but don't know the best approach.  Does anyone have any suggestions?   Thank you all so much.Sarah sarahbear Thu, 03 Jul 2008 00:00:00 GMT  On 7/3/2008 sarahbear wrote:Hi everyone.This is my first post to the message board after many months of reading.  My husband is eight weeks out of radiation/erbitux treatment for tonsil cancer.  The positive is that he had a clean post treatmnet PET scan.  He had a PEG tube (his lifeline) in 3 week of treatment and remains on today.  He struggles to take water or any liquid and usually tries once every 3 days.  After each try he feels the backlash in pain, coughing, thick mucas, etc.  He is really miserable and doesn't see any end in sight and is getting depressed about the future.  I have suggessted a few things: try to do something small each day that provides joy, like gardening; perhaps requesting a weekly visiting nurse to help him regain his swallowing funcion and minimzing the pain, and maybe getting a doctors appt sooner than his next monthly visit.  I am there for him and want to help but don't know the best approach.  Does anyone have any suggestions?   Thank you all so much.SarahHi Sarah  I am 8 months post treatment for cancer of the left tonsil.  I've been there and can understand what your husband is going through.  First, I looked forward to the day of my last radiation treatment.  I thought that was the worst it would ever get - WRONG!  I didn't realize that the effects of the radiation would continue to worsen for a period - but trust me - the worst does finally come and then little by little he will start to improve.  The heavy mucous was the pits.  I used up toilet paper and kleenex like crazy.  My husband kept after me to try drinking as I was totally reliant on my PEG tube.  I kept trying but just couldn't do it.  He and my doctors thought I was just afraid to try drinking/eating - kind of mind over matter - but when they did a swallowing study on me they found out that items were indeed going down the wrong way (the muscles that control the flap of my esophagus were apparently messed up from radiation and don't release the flap properly which allows water/fluids to go the wrong way easily).  I had to have swallowing therapy w/ a speech pathologist as a nurse is not trained to teach you to swallow.  Talk to your doctor about this.  I still have the PEG tube but I'm not as anxious to get rid of it as I used to be.  I have come to the conclusion that while I am greatly improved (!!!!!!!) from where I was at 2-3-4-5 months after treatment, I will never be back to where I was before radiation.  The most difficult thing for me to swallow is water - I have to take a drink, then hold it in my mouth for a second, and then swallow.  I can get larger amounts of water down the PEG tube quicker than drinking it during our warm weather.  Milk is much easier to swallow.  Did they give him stomatitis cocktail for mouth/throat pain?  If not, it is a combo of benadryl and Lidocaine, that you swish and swallow, and it helps!  My face and neck swelled up 8 weeks post treatment - scared my husband and I to death but I have recently seen where this has happened to many others.  Again, this is an after effect of radiation that no one told me to expect.  I came down w/ thrush app 6 weeks afterward also - which can cause a great deal of pain - so keep an eye on his tongue to see if any white patches appear.  Tell your husband I give him my word that one day this will all seem like a nightmare that happened to someone else.  At times, I read postings where someone is describing problems they are having and I think - oh, I forgot about that.  I have some war wounds - dry mouth, voice affected by radiation, inability to drink easily - but I won the battle.  My CT & Pet Scans were clear.  Just hang in there - things will greatly improve shortly - honest!!  I wish you the very best.       Dlynn1210 Thu, 03 Jul 2008 00:00:00 GMT