Squamous Cell Cancer of the Tonsil

Hello.  This is my first time on the message board.  My dad was just diagnosed with squamous cell tonsil cancer, T2 on August 27.   We were all shocked. 

 He is now going into his 5th week of both radiation and chemo (Erbitux), and it is getting rough.  He will have a total of 8 weeks, which seems like the distant future at the moment.  We are told that the two weeks after treatment will be the peak of the pain and discomfort. 

He has been on the feeding tube as his only nutritional source for about a week and a half now, doing about 8 cans a day of the liquid food and he has already lost 23 lbs.  He is also having a hard time stayind hydrated, although not yet so bad that they need to admit him.  He is still managing to allow crushed ice to sit and melt in his mouth as this offers some relief for the dryness, so we are thankful for that so to keep his muscles working in swallowing. 

He is now having issues with constipation, seemingly from the pain meds.  So far the only thing that seems to relieve that is going off the pain meds long enough to relaxe his body to have a bowl movement.

Otherwise, he is staying medicated, sleeping a lot and when awake is dealing with extreme fatique. 

I just need to hear that he will get through this.  If there is any insite/helpful solutions to relieve any of these things, please let me know. 

 Thank you for listening......

Audrey

Hi Audrey, Yes you are in a rough time and yes he will get through it. My husband also had the constipation issue. What is he getting through the tube? Some of the formulas have fiber, some don't. If his doesn't try dissolving Benefiber in water and pouring it into the tube. We do this at every feeding. While he was on pain meds my husband also used Sennakot-S once or twice a day. We crushed it and mixed it with water, down the tube it went. Of course, like all things, talk with the medical oncology nurse or dr before you add things. Our best thoughts are going to you. Your dad's treatment is very tough and the caregivers have it rough too. Just hang it there. It does get over and the mind has a wonderful way of helping you forget the dark days and look ahead to the better ones.

 

On 10/18/2009 Scotland wrote:

Hello.  This is my first time on the message board.  My dad was just diagnosed with squamous cell tonsil cancer, T2 on August 27.   We were all shocked. 

 He is now going into his 5th week of both radiation and chemo (Erbitux), and it is getting rough.  He will have a total of 8 weeks, which seems like the distant future at the moment.  We are told that the two weeks after treatment will be the peak of the pain and discomfort. 

He has been on the feeding tube as his only nutritional source for about a week and a half now, doing about 8 cans a day of the liquid food and he has already lost 23 lbs.  He is also having a hard time stayind hydrated, although not yet so bad that they need to admit him.  He is still managing to allow crushed ice to sit and melt in his mouth as this offers some relief for the dryness, so we are thankful for that so to keep his muscles working in swallowing. 

He is now having issues with constipation, seemingly from the pain meds.  So far the only thing that seems to relieve that is going off the pain meds long enough to relaxe his body to have a bowl movement.

Otherwise, he is staying medicated, sleeping a lot and when awake is dealing with extreme fatique. 

I just need to hear that he will get through this.  If there is any insite/helpful solutions to relieve any of these things, please let me know. 

 Thank you for listening......

Audrey

Audrey,

        I'm one year out from tonsilar cancer treatment - about the same type as your Dad's.   It's a rough go for sure.  I was using pain patches but realized that I wasn't in any pain, just a whole lot of misery so I quit using them (and didn't sleep for three days - the boomorang narcotics effect).  I've always had a constipation issue so asked about taking care of it first thing in my care.  There's a liquid sennakot and also a liquid stool softener available.  I think I had to order it from the pharmacy.   They were a life saver for me.

       And, although I came to appreciate my feeding tube, there were issues that were not mentioned to me.  Like, if one takes a med and then vomits an hour later, hmmm was that med absorbed?   I used Ensure because it was cheap and I had coupons but there are better, more nutritious types you can find on the net.  Ensure has a lot of sugar in it.

      I didn't lose my swallowing function at all - with the help of all that yucky mucus!   He will have dry mouth but a lot of saliva will come back as time goes by.  I found acupuncture to be most helpful.  It will be over and recovery will begin.  It's just awful to feel so weak but once treatment and those next two weeks are over, things will improve. 

      Good luck.  Susan

Hi Audrey........

It will be over...........however, right now it is so miserable!  If his neck is starting to burn, have them give him Biafine cream.  Hang in  there......he will get better in time!  Sounds like you are doing all the right things!

Steph

Hi - my heart and prayers go out to you and your family.  My husband is 9 months out of treatment for base of tongue, tonsil spread to lymph nodes.  He had 37 rad tx and 10 weeks of carbo and taxol chemo.  This was such a rough treatment.  He still has a feeding tube and has lost 59 pounds.  He has to go to the hospital and have his esophagus stretched every two weeks.  It is so damaged from the radiation that it will not stay open.  His epiglottis is very damaged from the rad as well.  He goes to swallow therapy three times a week to help swallow.  He also goes to a lymphedema specialist twice a week for the swelling.  He is now cancer free for which we are extremely thankful.  It is such a long rough treatment but he will get through it.  Take care and stay on this board - it is so helpful. 

Cheryl   Oklahoma City

Audrey,

      Sorry to hear that your Dad is having a such a rough time. It can be trying to say the least.

      As Tootsie and Susan mentioned, taking care of the constipation needs to be taken care of now. I used ( Colace ) a liquid stool softener that I could put in my PEG Tube daily. It can be bought at the Drug store and it is on the shelves.

     As you mentioned, your Dad is melting ice in his mouth, I was able to sip room temperature water to keep my swallowing motions. Has your Dad tried the Baking Soda and Salt solution to rinse and gargle with daily ? 

     The nurses recommended that we rinse/gargle with 1 teaspoon of Baking soda and 1 teaspoon of Salt in 1 Quart of room Temp. water. I increased this to 1 Tablespoon of each in the Quart of water. Rinsed/ gargled as often as every 30 minutes. It helped semi-numb my mouth and throat enough to be able to eat a little bit of soft food ( soups ) along with the nutrition cans. It may burn alittle at first if your not accustomed to a burning feeling, but it does settle down quickly and sooths the mouth and throat.

     Hydration as mentioned above is very important. The Doctors want us to take in 64 ozs per day. When using the PEG Tube, I would flush the tube twice with the syringe with water before using the cans, then flush again another 2 times with the syringe to get some more water in me.

     It made me feel full and although I was suppose to take in 8 cans as your  Dad, I might get in 6 or 7. It is a delicate balance trying to do all this. The pain med's that I was on for a short time was nurotin ( Sp ) .

     My Best to Both of You and Everyone Here

Has anyone been successful without the use of a feeding tube?

My mother has never had a peg tube.  They did not offer her surgery either.  She has been battling since July 08.  She has had some really bad days, but she had some good days.  She lost down to 107 lbs at one time, but then she started gaining it back.  The doctors told her to eat whether or not she wanted to.  We have found out that she eats better if us kids fix it and take it to her.  That way she does not have to smell it cooking.  Also, after she cooked something she was too tired to eat it.  It took us a while to figure that out.

My mom is 69 and a very strong lady.  I have really admired how she has handled this.  Anytime you hear the word Cancer, your heart skips a few beats.  After the shock wore off my mother told us she would rather have cancer than alzheimer's disease.  At least she would still recognize her family and friend.  My mother is a fighter and that is why she is still with us today. 

Enjoy life and continue to learn from others.  May God be with you.

Audrey, it's all so very tough but please also be assured that what your dad is experiencing is "normal" considering what he's being put through. Many of us had very similar experiences. I found that Miralax was very helpful for constipation. It was easy on the system, and when one is able to swallow, easily swallowed as it has no taste and just dissolves into water. It's easy to put in the tube and very safe. The chemo nurses introduced me to it. Available at all pharmacies. I'm impressed your dad is getting in 8 cans. I never could get in more than 4 or 5, maybe 6 on a really good day. As others have said, putting in plenty of water is also crucial for staying sufficiently hydrated. Someone else asked if anybody gets through this without a PEG. Amazingly, I've heard of quite a few, but most people end up with a PEG even if they set out firmly believing they won't get one. I was like that. But when faced with truly not being able to swallow, a PEG is a lifesaver in a very literal sense. Blessings and good luck to you and your dad.

I managed without a PEG tube, but it was very tough going towards the end. The good news is that my saliva and taste buds came back quickly, and I didn't lose my ability to swallow. Therefore, my recovery was possibly easier than most.