CancerCompass message board discussion started by Donnamswa on 4/1/2008 http://www.cancercompass.com/message-board/message/all,22586,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My Husband was diagnosed with cancer of the left tonsil and has some lymph node involvement. He will begin treatment next week after mapping. He will have radiation and Chemo at the same time. He is being treated a the University of Washington. As his caregiver with a teenage daughter I want to make sure that we are prepared for what lies ahead, I am scared after doing way too much research on the web as to the side effects and long term effects. If there is someone who can guide me on what will help my husband endure the treatment I would be so grateful. Donnamswa Tue, 01 Apr 2008 00:00:00 GMT My husband was recently diagnosed with the same thing, and I also have a child - my son is 7.  We are supposed to start treatments in a few weeks.  There is so much information out there, and this is a great place to get support and ideas, suggestions and questions to ask your team of doctors.  The stats are scary, and so are the side effects of the treatments.  But just remember that every single person is different.  Everyone handles things differently, and although it's great to research and learn as much as you can about what you're about to face - that does not mean everything you read about will happen to you.  So, stay strong.  Don't look too far ahead.  Focus on NOW.   Warm wishes and best of luck.  Hang in there, and take care of yourself!  Don't forget to rest and eat - take time to deal with this in your own way.  You are the caregiver and you have to stay strong.  You can do it!! Babzilla Tue, 01 Apr 2008 00:00:00 GMT Thank you so much for your encouragement; this is a very scary path we are going to go down. My husband is and has been the rock of the family he runs his own business and works 7 days a week at it, so we are way out of our comfort zone here.  I am so grateful that I happened upon this message board. You stay strong as well! Donnamswa Tue, 01 Apr 2008 00:00:00 GMT I'm about 6 months out of treatment for tonsil cancer ( left side, stage 4a), so I know pretty much what your husband is about to go through. I had chemo (cisplatin) and radiation (7 weeks IMRT). After about 4 weeks, I had to quit working, but I have a physically demanding job. With a desk job, I might have been able to work for longer, but at some point, he probably will not be able to work for awhile. I was out for about 5 months, I could have gone back sooner, but a had a nasty infection crop up in my throat that set me back about 3 or 4 weeks.Make sure he keeps his weight up. If he's having radiation on his throat, he will have trouble swallowing, so you may have to talk to the docs about a feeding tube. Make sure he swallows something every day, as it is possible for the body to forget how to swallow. Make sure he stays hydrated. The nausea from chemo will dry him out. They can help with iv's but make sure he keeps water or gatorade with him always. The radiation will burn his neck, find some Aquaphor lotion for that. He will alsao get dry mouth, ask for a prescription for Salagen to stimulate saliva production and have him use Biotene mouthwash and toothpaste, they are made for people with dry mouth. He may also have a lot of pain in his throat ( I did), dont be afraid to ask the oncologist for pain meds, mine gave me a liquid form of oxycodone that was very easy to swallow and did the trick nicely. He will lose his sense of taste somewhat, I have heard that zinc supplements help with that. I have also heard that taking glutamine supplement ( a protein supplement) helps too. Most of all, just be there for him. Support from family and friends helps a LOT. Try not to feel overwhelmed, I got through this just fine, your husband can, too. If you have any questions at all, we're all here for you.Best wishes and good luck.Mike micromisterphone Tue, 01 Apr 2008 00:00:00 GMT My husband was diagnosed with nasophayngeal cancer 5 weeks ago and just started treatment. I also tried so hard to be prepared. The best advice I was given was to be prepared for anything. We have two boys - 8 and 11 - my mom, grandma and sisters are rotating living with us until the treatment is through. He is having chemo and radiation concurrently as well and sometimes things have taken longer due to complications, appt. changes, and the need for fluids. Having someone at the house - doing laundry, playing games with the kids, being there after school has been a big help! I wish you well - use all the help people offer and hang in there - everyday is a new day -- you will make it. Cathie   CAW888 Tue, 01 Apr 2008 00:00:00 GMT Thank you for the advice this message board is a God send to me. My husband will be getting a peg tube on the 23rd about a week into treatment. (he is fighting that) I have ordered a lotion called theracare anyone heard of that?  We own a car lot so he sits behind a desk mostly and feels he will continue to work as much as possible. It is just do hard to predict what lies ahead. He will be taking part in a research study using a drug called Erlotinib along with the Chemo and radiation, is there anyone familiar with that drug? I did ask the Doc about something to help prevent loss of saliva and he said that he doesn’t prescribe it because it is not proven to help and that don;t want him to take anything that may interfere with the treatment. Any advice on that one? I am sorry I have so many questions, but I fully intend on using this wonderful resource to the fullest!  Thanks for the kind words and encouragement I can't express how grateful I amReady for the fightBe BlessedDonna (0: Donnamswa Wed, 02 Apr 2008 00:00:00 GMT Cathy, Thank you for the advice.what a journey this is Yes?Donna Donnamswa Wed, 02 Apr 2008 00:00:00 GMT Hi---be wary of getting too much information, it can be overwhelming and frightening. Take  this one week at a time and don't project about what will be coming up in later weeks. I am 10 months out from chemo/rads for tonsil cancer, treatment is rough, but doable. I have a website where I chronicalled my treatment. Send me a private message if you would like the link. Good luck! Girlcat36 Wed, 02 Apr 2008 00:00:00 GMT Hi Donna, It appears your husbands, home, work responsibilies& type of cancer and even probable staging are almost exactly thesame as mine. I am one year out of treatment and have been blessed witha very good recovery and prognosis by all concerned with my outcome.How each person responds is very different based on theirindividualized treatment needs and other factors. His attitude andnutrition are as equally important as other decisions you will face asa family. If you do a search on this board for my name you will findnumerous ( and sometimes lengthy) posts based on my observations andpersonal recommendations of what worked for me from a nutritional andtreatment standpoint. Another area and just as important was the love,prayers and support of those at home and on here, that helped me getthrough the "paralysis through analysis" on treatment options and makea good decision in a reasonable time frame. I believe the time prior togoing into treatment was more difficult emotionally than the actualtreatment or recovery was physically. The funny thing is my wife hasdifferent thoughts, she felt seeing my difficulties going throughtreatment was harder. I feel that is based on a desire to put all mybest effort into getting the most from treatment, getting through itand getting it behind me and not focusing on the negativity. Make yourbest decision, go into it heart and soul and ride  all positivethoughts and energy to what will hopefully be a successful andfortunate outcome. There is amazing power in a smile, my wife's waslike a beacon that drew me from those moments that doubt tried to sapthe energy I needed to drive forward into recovery.  Our prayers, hopes and thoughts are with you and your family throughoutthis process. If I can help in anyway please don't hesitate to contactme and I will try to helpMatt  Mattnmiami Thu, 03 Apr 2008 00:00:00 GMT It is definately comforting to see encouraging words out there.  My husband was diagnosed two weeks ago with squamous cell carcinoma in his neck and it has been a roller coaster since then.  He will be having surgery twice next week, once to biopsy a spot they found on his vocal cord and then later in the week to get his peg tube.  Radiation starts on the 14th and he will be doing that in combination with erbitux for close to six weeks. This has been the worst time of my life and it is nice to know that there are others there who are feeling the same types of things I am.  My husband is very strong and I think he will soldier through this but I am also glad to see the ecouragement as well. Thanks! g8orgal79 Sat, 05 Apr 2008 00:00:00 GMT  On 4/3/2008 Mattnmiami wrote:Hi Donna, It appears your husbands, home, work responsibilies& type of cancer and even probable staging are almost exactly thesame as mine. I am one year out of treatment and have been blessed witha very good recovery and prognosis by all concerned with my outcome.How each person responds is very different based on theirindividualized treatment needs and other factors. His attitude andnutrition are as equally important as other decisions you will face asa family. If you do a search on this board for my name you will findnumerous ( and sometimes lengthy) posts based on my observations andpersonal recommendations of what worked for me from a nutritional andtreatment standpoint. Another area and just as important was the love,prayers and support of those at home and on here, that helped me getthrough the "paralysis through analysis" on treatment options and makea good decision in a reasonable time frame. I believe the time prior togoing into treatment was more difficult emotionally than the actualtreatment or recovery was physically. The funny thing is my wife hasdifferent thoughts, she felt seeing my difficulties going throughtreatment was harder. I feel that is based on a desire to put all mybest effort into getting the most from treatment, getting through itand getting it behind me and not focusing on the negativity. Make yourbest decision, go into it heart and soul and ride  all positivethoughts and energy to what will hopefully be a successful andfortunate outcome. There is amazing power in a smile, my wife's waslike a beacon that drew me from those moments that doubt tried to sapthe energy I needed to drive forward into recovery.  Our prayers, hopes and thoughts are with you and your family throughoutthis process. If I can help in anyway please don't hesitate to contactme and I will try to helpMatt Thank you so much for the encouragement, It is so helpful to hear from someone through with treatment and had a good outcome. I will do a search by your screen name an covent the advice. We are blessed by a great support system as well as a faithful GODThanks again and I will stay intouchDonna Donnamswa Sat, 05 Apr 2008 00:00:00 GMT  On 4/5/2008 g8orgal79 wrote:It is definately comforting to see encouraging words out there.  My husband was diagnosed two weeks ago with squamous cell carcinoma in his neck and it has been a roller coaster since then.  He will be having surgery twice next week, once to biopsy a spot they found on his vocal cord and then later in the week to get his peg tube.  Radiation starts on the 14th and he will be doing that in combination with erbitux for close to six weeks. This has been the worst time of my life and it is nice to know that there are others there who are feeling the same types of things I am.  My husband is very strong and I think he will soldier through this but I am also glad to see the ecouragement as well. Thanks! We Just found out yesterday that my husband will begin treatment on the 14th as well, I guess we will be on this ride together. Stay strong and I agree it is a comfort to not feel so alone.Be Talking to ya I am sureDonna Donnamswa Sat, 05 Apr 2008 00:00:00 GMT