CancerCompass message board discussion started by Brett37 on 5/9/2008 http://www.cancercompass.com/message-board/message/all,23894,0.htm Wed, 09 Jul 2008 00:00:00 GMT Wed, 09 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My name is Brett i have cancer or had in my tongue and lymph nodes and during treatments i lost my salivary glands i would love to speak with someone on how to handle this or things you can do to help this or ways to make dealing easier. Brett37 Fri, 09 May 2008 00:00:00 GMT Greetings,Diagnosed in December with Head and Neck cancer on tongue and lymph nodes. Had right radial neck dissection to remove cancerous lymph nodes along with 6 chemo cycles and 6 weeks + 14 days of booster radiation therapy. As you can imagine, all the fatigue, nausea and burnt/sore throat symptoms are prevalent.The PEG tube and chest port have been wonderful in getting the infusions and nutrition to stay above water. From what is on the forums, it takes months to get voice and strength back to start feeling better. The hardest part is the toll chemo and radiation take on the salivary glands and taste buds. I read on this forum that for every week of radiation, it takes one month to get out of your system. Please correct this if it is inaccurate. The mucositis caused by the radiation is bad. Don't know why the choking is worse at night interfering with sleep, but that is my experience. Can't wait for radiation to be over with. My neck has 1st degree burns and is peeling pretty bad despite lotions applied 2 to 3 times per day.Keep checking back on this forum for more input from the good folks here. They are very knowledgeable, kind and caring. All the best!To see more about my battle, visit my blog at:http://www.psiplex.com psiplex Sun, 11 May 2008 00:00:00 GMT Hello Brett,          During my Radiation, I also lost my Saliva. I drank water and still do. I was told by my Oncologist that he could prescribe some medications to try to induce the saliva. No promises, just some attempts.          I read up on it and found that the side affects to me were worse than the problem of not having saliva. So, I opted not to do the meds. Another option that was mentioned was Acupuncture. I did not try this, but I know of a friend that did, with good results.         Myself, I keep a small bottle of water with me at all times. I have had success with Denetyne Artic Ice chewing gum. It is minty and brings a tear to my eye when I first start chewing it, but it settles down in a minute. When I do this, it stimulates the saliva and I don't need to drink as much water during my working hours.         The only down side for me is that the constant chewing then tightens up my neck muscles. I then massage my neck doing the exercises that the Cancer Therapist taught me for Lymphodema in my neck. It is just another part of my daily routine.           Saliva is very important in the protection of our teeth, since I don't produce much, I do a daily routine with the Flouride Trays to help protect my teeth. So far, so good.           Lotion on the neck, I still do this, it helps with the tightness.  During treatment, I put it on at least 6 times a day if not more. I was told to do it 2-3 times, but found it wan't enough.          My Best to Everyone. Pop-Pop Sun, 11 May 2008 00:00:00 GMT  On 5/9/2008 Brett37 wrote:My name is Brett i have cancer or had in my tongue and lymph nodes and during treatments i lost my salivary glands i would love to speak with someone on how to handle this or things you can do to help this or ways to make dealing easier.Brett-I am almost 13 mos out of TX, SCC, Stage IV, unknown primary. I have lost all salivary gland function. I have read so many opinions on this, and apparently there is still hope. Meanwhile, it is a big issue. I literally drink water from the moment I get up to going back to bed again. Because of my (lack of) taste issue, it never tastes good, either. The only other thing I can tolerate is ice tea; and funny enough-iced cappucino, sometimes. It's worse when I talk-(I sell ins, so HAVE to talk all day long) When I'm quietly watching TV or reading and keep my mouth shut, I can go longer periods. I have tried dry mouth sprays (ick) and mouthwash-that's good for a temporary fix. I always have sour, bitter taste in my mouth-to the back of my tongue. I brush my teeth alot to try to alleviate it.I drink constantly when I'm eating; and have a short list of foods that work for both the saliva and taste. I consider it, a long with the taste problem and my loss of hearing due to cisplatin, to be the greatest lasting side effects of the cancer ordeal. Maybe someday they'll be doing salivary gland transplants(!!) but until then you hope for the best (and drink and pee). Good luck to you! Gayle gayleann Sun, 11 May 2008 00:00:00 GMT Hi, Brett.I have been having some luck with pilocarpene (Salagen is one kind). Talk to your oncologist or ENT about a prescription for it. Side effects (in me) seem limited to a little extra sweatiness, but I do get a noticeable increase in saliva. I try to take it about half an hour before meals to give it time to work. Also try the Biotene products, toothpaste, mouthwash, gum and mouthspray. They can help replace the enzymes in saliva that protect your teeth. They are available at pharmacies and some grocery stores and places like Target and Walmart.Also try keeping a cool air humidifer in your bedroom at night, and ,of course, the ever present bottle of water.Hope this helps a little.Mike micromisterphone Sun, 11 May 2008 00:00:00 GMT brett, this is a long journey, i used a natural tooth paste, tom's paste and i did the floride trays, the water had to be just right, the food was bland and i used a product called GLUTAMINE POWDER, the dry mouth was alful, i drank water all nite, and the salgin medication was alful side effects, i gave up on that but let me tell you it is slow but it does get better, i had something called acute infection in the salivary glands from head and neck rad treatments,the food was bland because the taste buds were gone. they are 95% back but it has been a while. i remember tepid coffee tasted pretty well, it is one food in front of the other for awhile, you made it this far the worst is over this is the climbing back part...bless you i know what you are going thru. if you need more info maybe i can remember more.   jusykitty Thu, 22 May 2008 00:00:00 GMT