Addie Posted June 1, 2004 Share Posted June 1, 2004 Here I've been doing so well...staying positive...made it thru the first round of chemo with nothing much worse than a bit of fatigue....and now I'm half terrified after meeting with radiation oncology today. I had the simulation and got the little tattoo marks and they loaded me up with info and all the possibilities. I've been reading thru some of this stuff...and I can't help it, I'm getting nervous. Mostly about being able to keep myself boosted nutritionally in order to avoid the feeding tube.....and then they scare the bejeebers out of you too, about what happens to your skin! I will go in each time, early, for the IV infusion of amifostine, which is the radiation protection. But even THAT can cause nausea and b.p. problems and a rash and I've got to take anti-nausea meds an hour before and then drink half a swimming pool of water with it to make sure I'm hydrated. Fear of the unknown again, I guess. I mean, once things are under way maybe it won't be so bad...but I need someone who's been there to talk me thru it a bit....give me some first hand info on what I might expect. I probably won't start the radiation until the week of the 21st...and I don't want to lose another 5 lbs. worrying about it betweeen now and then. I'm BREATHING....I promise. And trying to relax. But anyone who's had the mediastinum radiated....can you tell me how it was for you? How did you eat when it was hard to eat? WHAT did you eat or drink? I need some tips on keeping the weight on....and tell me too, were you good about trying to exercise a little in order to keep your energy up? Give me the primer on radiation, please. How to prepare for it and how to get thru it with a minimum of problems. Thanks! Quote Link to comment Share on other sites More sharing options...
Snowflake Posted June 1, 2004 Share Posted June 1, 2004 Addie, I had my cleavage enhanced with radiation... (Anyway, I would think that tanning it more than the rest of my chest makes it look even deeper...LOL) My problems: I'm one of the 10% that have the side effect of metallic taste in mouth during treatment... Solution: Suck on sour candy - Altoids Tangerine Sours worked for me, got the whole office hooked on 'em Fatigue... I napped A little irritation on my radiated spot.. I applied aloe vera, 3x/day - NOT the cosmetic kind, the stuff sold at the pharmacy in the hospital with no scent, no alcohol.. Throat irritation.. Chew food better, longer - things I chewed went down easier than things that were liquid...for some reason, the body takes smaller "gulps" for solids than for liquids so the Oreos went down and the milk stung Worse throat irritation...(closer to the end of radiation) Drank a shot of aloe for the irritation followed by a shot of Carafate (YUCK! EW! NASTY!) to coat the whole she-bang. Irritation lasted for about three weeks after radiation ended and one day I realized I was swallowing again... It's not that bad, I promise. Becky Quote Link to comment Share on other sites More sharing options...
Addie Posted June 1, 2004 Author Share Posted June 1, 2004 Thanks, Beck....I needed to hear it from someone who's been thru it. If you could get Oreos down....then so can I! Quote Link to comment Share on other sites More sharing options...
twodogs Posted June 1, 2004 Share Posted June 1, 2004 In June of last year, during the front end of my radiation tratment, I often wondered if I was ever going to be able to swallow air again without pain. Well, maybe not that bad. Things like well seasoned meats, beer, carbonated drinks, etc. were really hard to get down. Ice cream, custards, pudding and other foods in that category went down well. Cream filled, chocolate coated bismarcks got to be my main meals. Besides that, I liked them before I got ill. Surprisingly, lemonade went down really well so that helped get me through the summer. I had my last radiation on August 19, last year and have gradually been getting better. Like others, either from the chemo or radiation, I pretty much lost my appetite and most foods did not taste anything like they should. Ergo, weight loss. This was sort of a humorous situation as my chemo doc encouraged me to get down anything I could, (ice cream, pudding, etc.) while my cardiologist, (yeah I've got that too), was all over my butt to get my cholesterol and triglycerides down. Because of the concentration of radiation to my esophegal area I did end up with some other complications which required me to do the requisite relearning of taking smaller bites and doing more chewing. Good news is, things are tasting a whole lot better now and I'm eating a whole lot more. I'm at just under 160# now, down from 180#+ but up from around 140# and will be perfectly happy to hold this. I feel good , but as I stated before, still have the anemia and lack of energy. In retrospect, the radiation treatments themselves never bothered me other than the exhaustion. And, since my sense of tastes changed I didn't miss my old favorite foods that much. Good luck on your treatments. Keep us up to date. Quote Link to comment Share on other sites More sharing options...
john Posted June 1, 2004 Share Posted June 1, 2004 I have heard that amofistine (Ethyol) is supposed to go a good job of protecting you from the side effects of radiation. At least it is supposed to protect from fibrosis. So it is really good *I think* that they have given this to you. My mom went through radiation fairly easily. Just a some fatigue from what I heard, but I live 7 hours away so I did not really see. But I think she worked through all the treatments So I think it depends on the person, people have fewer or more side effects than others Good luck Quote Link to comment Share on other sites More sharing options...
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