wenna Posted July 8, 2003 Share Posted July 8, 2003 Hi everyone, hope you are all doing ok. My rad onc has set me up to start Ethyol? It's to help relieve the sore throat before it happens... I've been reading the pamplet that he gave me and it sounds pretty rough. Just wondering if anyone has ever had this and was it as rough as this reads out as... wenna Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted July 8, 2003 Share Posted July 8, 2003 What is the sore throat from? I have not had that problem. Quote Link to comment Share on other sites More sharing options...
wenna Posted July 8, 2003 Author Share Posted July 8, 2003 Hi Cindy, sorry I wasn't more specific.. I have radiation treatments that go thru or around the esophogus (I think that's it) and sometimes the lining gets really really irritated so the throat is way sore. But that usually comes a lot further on than I am and that's why they say they want to start now before it gets to that point. Kinda like preventive medicine? thanks for the reply tho.. Hope you're doing good! wenna Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted July 8, 2003 Share Posted July 8, 2003 I am doing all right. Had 1st day of chemo today and no problems except that stupid steriod they give in the premed injection. I get so hyped I can't sleep well I feel like I look like this little guy-bug eyed-ha. When I had radiation to the esophogus area last spring I got some liquid med called 'magic mouthwash' it had some lidocaine in it so it numbed the throat-made it easier to swallow. It also had some type of antibiotic in it. Hope you get some relief Quote Link to comment Share on other sites More sharing options...
Laurie Posted July 8, 2003 Share Posted July 8, 2003 Hi Wenna, I think Jenny had that.. she had 2x radiation??? Blessings to you.... Laurie Quote Link to comment Share on other sites More sharing options...
wenna Posted July 16, 2003 Author Share Posted July 16, 2003 Just wanted to give an update.. the Ethyol wasn't the right one for me. I got so sick from it. It lowered my blood pressure so much, I could only just sit and stare into space, that is between the bouts of severe nausea and diaherrah (SP?). So after only 3 days of being on it, the weekend gave me an idea of how awful this was getting, so on Monday I declined to take it and the next day I talked with the rad onc and he said that was the best decision. Now I know it is as I am back to being my old self (sorta). I was suprised because after talking with at least 4 people who had taken this and had no reaction at all, I thought it was just something else to take. I ususally don't put up a fight over anything, it's just not me. But everyone has said I should really get involved in my own treatment and am glad I listened to you guys' advice! Thanks bunches!!! wenna Quote Link to comment Share on other sites More sharing options...
ginnyd Posted July 16, 2003 Share Posted July 16, 2003 Wenna, Ask the rad onc. about Carafat. Really helped my husband and he did not have any side effects from it. Good luck. Quote Link to comment Share on other sites More sharing options...
wenna Posted July 16, 2003 Author Share Posted July 16, 2003 Thanks Ginny I will! So far I'm doing so good he said it just may not be necessary. I'm already half way thru I think and they're doing the radiation at an angle so it isn't so close to the esophagus. But I will ask him about it anyway cause they say after about 10 of these, they'll go back to the straight on and it MAY get worse then. Blessings to all, wenna Quote Link to comment Share on other sites More sharing options...
Jenny G. Posted July 20, 2003 Share Posted July 20, 2003 Hi Wenna, I've been gone and just read your post. It sounds like you've already found your answers, but I'm copying excerpts from my May posts anyway. Now we can have all of our information together. Who knows how I would have done without the injections. Some people don't have a problem. I did end up having about a week or 2 of soreness, but never to the point where I couldn't eat. Also, they took extra precautions because of the twice a day treatments and I do remember that the lowered blood pressure was something they had to keep an eye on. Thought I'd share some of the preventative measures that are being taken (for twice daily chest radiation). He has something to give me that I must take 4-6 times a day to coat my esophogus. I drink it, then wait an hour before eating or drinking anything. I've also been told to take compazine and a generic Claritin (lorathadien) first thing monday morning. My treatments were scheduled for 9 am and 4 pm. Now he has decided that I need to come at 8 am to receive an injection of Amifostine (ethyol) which needs to be given 45 minutes before treatment. This is used in head and neck radiation to protect the salivary glands and he is using it as a precaution because of the twice a day treatments. I have also been given a cream to use on the skin. One of my main worries of radiaiton is the esophagitus and the 2x dose more than doubles this risk. I read from 11% to 26%. But, as they informed me today, that is without precautions they are now taking. Bad news, I have to have 2 injections each morning. The Ethyol given 45 minutes in advance of treatment and is given in a dose divided between my 2 arms, then my 2 legs, then stomach rotating around each day. Not so bad though. It used to have to be given intraveniously and then there was only a 15 minute window to do the radiation. The compazine and claritin are to combat possible side effects of the Ethyol not the radiaiton. On day 5 I will begin taking Carafate (sucralfate). That is the liquid that I need to drink 4-6 times a day to coat the esophagus. I think it is an ulcer medicine and makes fibers that fill in the irritation in the tissues or something like that. On monday of the 2nd week I will start taking Diflucan, an anti-yeast medicine. Thought I'd give an update after finishing the first week. It went really fast. I have had 10 treatments and to answer John, I believe it is equal to a normal course of 10 days (given in 5). My total will be 45 gy (150 units, 30 fractions). I must admit, I don't know what that all means. Each twice daily dose is divided into 2 parts, one from the front and one from the back. He told me that my next week's treatments are already planned out and will change a little in the angle of entry. He thinks things are going well. On the first day I experienced a little feelings of nausea, I had not eaten anything that morning and felt better after I ate. Each day after, I tried to eat something every morning before treatment. No more nausea. On Friday, I decided to try to do without the compazine, but about 45 mintutes after the injection I felt a slight bit of nausea and took the pill. I found out that I am a test case for the Amifostine being used for lung cancer radiation. He believes the salivary gland protection may extend as far down as the stomach. Also, the company that makes this drug will work with your insurance company to get it approved because it is more cost effective than treating the problems it is designed to prevent. I was also told that the company will provide it at no cost for those who have nothing. I guess it's still too soon for the side effects to hit me, but I feel absoutely great! I was pretty tired Monday thru Thursday, but by Thursday night I felt almost hyper and still do. I actually feel good and have more energy than I have in ages. My only side effect is some soreness in my thighs from the injections (the last 4). It turns out the stomach was the easiest, maybe because of my extra padding there. I also had 4 injections in my arms (the first 4) and they aren't sore either. I will continue to post developments in this same thread for those interested. I've made it through the 2nd week. 19 total treatments behind me now. I had to miss one because of another problem which I'll post seperately, so they are adding an extra day on the end for a total of 31 treatments. This is flying by and I'm still holding up well to the radiation. They asked if I was having any swallowing problems and no I'm not. Then today my son had some crispy fried chicken and I took a piece and bragged about how lucky I was to be able to eat it, well, wouldn't you know it just kind of stuck there in my throat and didn't go down all that smoothly. A little drink and it was fine, but no more bragging. I ain't home yet. A different nurse gave me one of my injections and it hurt so bad I screamed, poor woman, I scared her and she pulled it out and stuck me again. That was the worst shot yet. They really are usually not bad. After learning how expensive this medicine is, I wouldn't dare complain, I feel very fortunate to get it and it just might be working. I'll post again next week. Thanks for the support. Well, Friday should have been my last radiaiton treatments, but will now finish up on Monday. I've got 29 behind me and things are looking great. They feel the Amifostine did it's job and they will probably be using it more often now. I can eat anything with very little problem. The downside of this medication is of course the injections, I didn't have too much trouble with that, but they are giving this to another man now and he is very needle shy which makes it more difficult. Also, I found out that it is even more nausiating than the chemo, but that has been controlled with anti-nausea meds (pretty much). Of course, we don't know how I would have done without this, but they think I would have been having a lot more difficulty with my esophogus. The carafate probably helped this too. Well, that was my experience. To be honest, now that it's all behind me, I don't know if I'd go through those injections again. On the other hand, there have been people who had serious problems with the burning, even to the point of hospitalization and with a long recovery. I know my doctor was very pleased with the results and definitely thinks the Ethyol was responsible for the good outcome. Best of luck. Jenny Quote Link to comment Share on other sites More sharing options...
Lillie Posted July 21, 2003 Share Posted July 21, 2003 I was just wondering what part of Alabama you live I'm in Mobile Co. Lillie Quote Link to comment Share on other sites More sharing options...
wenna Posted July 24, 2003 Author Share Posted July 24, 2003 wow Thanks Jenny!! Lots of info for everyone. I've been doing so great since coming off of it. No trouble swallowing. Thanks for posting so everyone could follow along! Hi Lillie! Great to meet a neighbor! I live in Madison County.. almost to the Tenn. state line.. Huntsville, AL. so it seems we're at the opposite end of the state.. LOL Thank you all for posting! wenna Quote Link to comment Share on other sites More sharing options...
pritchie Posted July 24, 2003 Share Posted July 24, 2003 Wenna. Glad to hear you are doing better. Prayers are with you. Pamela Quote Link to comment Share on other sites More sharing options...
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