CancerCompass message board discussion started by Donnamswa on 4/7/2008 http://www.cancercompass.com/message-board/message/all,22780,0.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/ Does anyone have an advice on protecting the saliva glands during radiation treatment? The Dr said for sure my husband will lose one side and the other will be greatly affected. When I asked about meds to help he said he doesn’t prescribe anything because he they are not proven to work and he is not sure how they affect treatment. He will begin on Monday the 14th so would like to have all the information I can before then to talk to the doc about.Thanks so muchDonna  Donnamswa Mon, 07 Apr 2008 00:00:00 GMT I'm not sure it's possible to completely protect them, but some on here say that taking glutamine supplement helps minimize damage and aids in recovery. I cant tell you if it works, I found out about it after the fact.Best wishesMike micromisterphone Mon, 07 Apr 2008 00:00:00 GMT I got Ethol shots before every radiation treatment and am convinced it helped a lot. I also took the Glutamine, but I think that helped more w/ mouth sores then saliva. Even still and with everything, he will still be affected. It's just part of the process, and in the long run. Not all that unbearable. I just carry a water bottle and drinking a lot of water isn't a bad thing.Rick rick51 Mon, 07 Apr 2008 00:00:00 GMT My husband had amophostine shots before each treatment (42 treatments total) This shot is given to further protect saliva glands. I guess this is a bit controversial in some medical communities but we did it. We were told that some docs say it doesn't work, however, my hubbie was blasted with rad and he has very good saliva.  The main complication is nausea, so he took an anti- nausea drug a half hour before treatment and never had an issue with that side effect. Today, his radiologist says that he has more saliva than many of his patients. I would strongly recommend looking into this. Quality of life after treatment is important and the more saliva you have , the better.I highly recommend gultimine, also. My husband took this all the way thru treatment 30 mg a day - and a boost before radiation treatments. This helped with muscle, saliva and mouth sore prevention.       Julie21 Mon, 07 Apr 2008 00:00:00 GMT Just so there isn't any confussion. The amophostine injections and the ethyol are one in the same. I highly recommend them as well, but be prepared for the nausea they can cause. Most people do suffer from that as written. I didn't until the last two weeks, then it got bad.Good luck and God bless.Rick rick51 Tue, 08 Apr 2008 00:00:00 GMT  On 4/7/2008 micromisterphone wrote:I'm not sure it's possible to completely protect them, but some on here say that taking glutamine supplement helps minimize damage and aids in recovery. I cant tell you if it works, I found out about it after the fact.Best wishesMikeWe did get that L-Glutamine So we shall see, thank you for the adivceHave a Great DayDonna Donnamswa Tue, 08 Apr 2008 00:00:00 GMT  On 4/7/2008 rick51 wrote:I got Ethol shots before every radiation treatment and am convinced it helped a lot. I also took the Glutamine, but I think that helped more w/ mouth sores then saliva. Even still and with everything, he will still be affected. It's just part of the process, and in the long run. Not all that unbearable. I just carry a water bottle and drinking a lot of water isn't a bad thing.RickThanks for the advice on the Amiphostine. one more questions; the Doc already said no to this. Is it our right to demand that My husband be given the Amiphostine? As for the L-Glutamine he is taking a way higher dose than 30 MG I think its more like 1500 MG in a powder form that I purchased from a health food store. Its a good thing my husband trust me because it seems like whatever pill or powder I put in front of him he will take! Thanks so much to all of you I beleive I have discovered my new life line!DonnaThanks Donnamswa Tue, 08 Apr 2008 00:00:00 GMT My radiation oncologist said he didn't think the shots were worthwhile and advised against them, they are also extremely costly and some insurance won't cover them. But I said I wanted them and he caved. If you decide you want them, be persistent. Your radiation oncologist won't give them to you, I had to go to a chemo. facility for them 1/2 hour before the radiation.The Glutamine powder container says one heaping teaspoon = 5g's. I took two heaping teapsoons mixed w/ Resurgex powder 3x's per day.Hang in there.Rick rick51 Tue, 08 Apr 2008 00:00:00 GMT p.s. In re-reading your email. You are confusing milligrams w/ grams. MG's= milligrams. 30 grams is what I took daily. Not sure how many milligrams that equals. Rick rick51 Tue, 08 Apr 2008 00:00:00 GMT PSS1500 milligrams = 1.5 grams (i think). rick51 Tue, 08 Apr 2008 00:00:00 GMT My hubbie's radiologist agreed to the Amophostine when I brought it up. He was fine with it and said he thought it was worthwhile and beneficial. My husband took neausea pill 1/2 before the shot, which was given daily by the radiologist nurse. The doc did share with me that some doctor's don't think it's necessary or that it works. If I were in your shoes, I'd push for it.  Julie21 Wed, 09 Apr 2008 00:00:00 GMT  On 4/8/2008 rick51 wrote:PSS1500 milligrams = 1.5 grams (i think).Thats right I checked it is the same I guess I should up his daily dose? What is Resurgex? Is it something we should know about?Thanks so much for all the help! I feel like we have been climbing up a steep steep rollercoaster hill and are about to go over the other side and have no idea what lies ahead   Yippes!Be BlessedDonna Donnamswa Wed, 09 Apr 2008 00:00:00 GMT I had treatment for tonsil cancer in 2004 at Spartanburg SC regional medical center.  They may refer you to Gibbs Cancer Center.  When I began radiation I also started on shots that made me sicker than a dog.  The chances of them protecting my saliva glands were 20% so I stopped.  The hospital could tell you what the shots were, I don't remember.  Post cancer I am on one of two medications for saliva.  Evoxac or Saligen.  For me Evoxac works better.Had the cancer spread before it was found.  If not, what symptoms led to the discovery of cancer?  My lymph nodes were swollen.  dec49 Wed, 09 Apr 2008 00:00:00 GMT Resurgex is a brand of protein drink. You can google them to find where to buy. It has less sugar than most. I actually could taste it all the way through treatment and it takes pretty darn good. They have strawberry, vanilla and chocolate flavors. More vitamins than drinks like ensure.Hang in there.God bless.R rick51 Thu, 10 Apr 2008 00:00:00 GMT I would be very careful with the amifostine shots.  My husband had the shots for the first week of treatment but then had a VERY bad reaction to them.  He broke out in a rash that covered his body, became very ill and ran a very high fever (all of this started within 45min. of the shot).  That night we called the doctors office 5 or 6 times and almost took him to the ER.  He really thought he was going to die that night.  After that, the doc took him off the shots, but after 35 radiation treatments and chemo, he has no problem with his saliva, and the radiation was to both sides of his neck. Glutamine powder was something he used, and we both agree that it made a difference in his level saliva.  My husband can taste everything and no longer needs to carry a bottle of water.- Amy Amynmiami Fri, 11 Apr 2008 00:00:00 GMT  My husband had the same rxn to the shot. He started by getting a rash at the site of the injections and then, by the 39th shot, his eyes were "ringed" and the stopped the shots for the remaining rad treatments. Quickly the few areas of rash turned into a full body rash rxn and he spent two months on steroids to clear it up. Our radiologist told us that this sort of rxn is not common but it was still scary.    Julie21 Sat, 12 Apr 2008 00:00:00 GMT I had a saliva gland transplant on the good side before radiation was started.its kinda of new treatment and i can give you the doctors name that performed it  to give to your doc if you want. i am 7 mo out of treat ment for scc of tonsile t2n2m0 stage III and have pretty good saliva although not completely back to normal. please feel free to contack me for more info... Aviatorrandy Thu, 17 Apr 2008 00:00:00 GMT I was treated with Salagen (tablet.) I don't know if it made a difference, but 5 months after the end of radiation treatment my saliva production is much better than at the end of the treatment. When I asked about amophostine (ethyol) injections, my doctors told me that the original manufacturer-administered trial produced promising results, but additional, independent trials did not confirm them. Laszlo Thu, 17 Apr 2008 00:00:00 GMT