Jenny G. Posted April 13, 2003 Share Posted April 13, 2003 Hi all, Even though I didn't get a lot of encouragement for the twice a day radiation, I've decided to give it a try anyway. I figure I can always cut back. It starts monday and I must admit, I'm very apprehensive. I already have little energy. Thought I'd share some of the preventative measures that are being taken and ask for any others that you may know about. First of all, this radiologist hasn't done this with anyone for 2 years. The last patient was an RN that ended up in the hospital with esophogitis. 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. Luckily, I have a desk job and will go to work between treatments although I may not be worth much there. I would appreciate anyone sharing preventative techniques used in their radiation treatments. Please wish me luck. Jenny P.S. Has anyone experienced damage to the heart from radiation to the chest? Quote Link to comment Share on other sites More sharing options...
Ry Posted April 13, 2003 Share Posted April 13, 2003 Damage to the heart is a possibility from radiation or from chemo. My husband never experienced any problems with his heart until now. The cardiologist said it could be due to the radiation or the chemo, they're working on finding that out now. He is going for a stress echo Tues. His condition is cardiomyopothy or a "weak heart" he is taking drugs now to see if they help. Quote Link to comment Share on other sites More sharing options...
SandyS Posted April 14, 2003 Share Posted April 14, 2003 Jenny - I don't mean to be an alarmist or anything, but I really don't like the sound of what this radiologist is telling you. Did you get a second opinion? Anyone who hasn't done this in 2 years isn't up to date on the latest developments. Why does he want you to take compazine? That's an anti-nausea medication. Radiation shouldn't make you naueseous. And radiation - or how you're handling it physically - IS an accumulative thing. To say "I can always cut back" isn't a very realistic possibility, because by the time you realize it's too much, it could have already done enough damage to hospitalize you. And the stuff you're supposed to take 4-6 six times a day is probably Lidocane. It doesn't protect your throat or espohogus - it NUMBS them so you CAN eat. Again - I'm sorry to be so negative - I started out SO positive and with NO problems with the chemo......I just don't want you to end up in as much pain as I was if you're dealing with an incompetent doctor. BEST of luck and keep us posted, Sincerely, SandyS Quote Link to comment Share on other sites More sharing options...
Laurie Posted April 14, 2003 Share Posted April 14, 2003 Jenny, I'm wishing you all the best . But I am worried.. Just make sure that the cream that you put on, you do not have "any" trace of it on your skin when you get radiation as it will cause you to burn more. My Mom found out the hard way! You must shower it off before going in for treatment. The internal can't be predicted.. Please Take care.. I think once a day and chemo is fine but I do wish you all the best. Laurie Quote Link to comment Share on other sites More sharing options...
Guest Posted April 14, 2003 Share Posted April 14, 2003 Ask your doctor if the 2X radiation could give you additional chances of getting this disease as radiation damage is listed as a cause of this disease. Pulmonary fibrosis is a complicated, chronic illness that can derive from many different causes. The disease can be mild or severe. It is not contagious. Pulmonary fibrosis is the abnormal formation of fiberlike scar tissue in the lungs. The scar formation is preceded by, and associated with, inflamation. If the disease progresses, the lung tissues eventually thicken and become stiff. The work of breathing then becomes difficult causing breathlessness. It can run a gradual course, remain unchanged or run a rapid course. It can also be fatal. The alveoli (the tiny grape-like air sacs that take oxygen into the lungs and expel carbon dioxide), are affected. Fibrosis twists them out of shape. Lung capillaries (small blood vessels) also can be distorted by pulmonary fibrosis. In addition, the tissues between and surrounding the alveoli are changed by fibrosis, thus completely deranging the basic architecture of the inner lung. These "in-between" spaces are called the "interstitium". This condition has a number of causes and is known by many different names. "Interstitial pulmonary fibrosis" is perhaps the most common name, but other terms frequently used include: "fibrosing alveolitis", "intersititial pneumonitis" and "Hamman-Rich syndrome". Quote Link to comment Share on other sites More sharing options...
Deanna M. Posted April 15, 2003 Share Posted April 15, 2003 Jenny, I don't know much about radiation, I just want to wish you lots of luck. I hope you get through it as painless as possible. I will say a prayer for you. Hang in there. Quote Link to comment Share on other sites More sharing options...
Jenny G. Posted April 15, 2003 Author Share Posted April 15, 2003 Thank you all for your replies. Today was the day and I have a lot of good information. First let me start with some background. I guess my first opinion on this treatment came from the M.D. Anderson site. They say it is their standard treatment for limited SCLC for people in otherwise good health. This originally comes from a 1999 study by Dr. Turrisi published in the New England Journal of Medicine. The twice a day radiation increased the 2 year survival by 6% and the 5 year survival by 10%. In this study the chemotherapy used was cisplatin and etoposide. The total dosage of radiation is the same. The radiologist I am seeing had no hesitation when I asked for this (he is my 2nd opinion). Also my medical oncologist didn't seem to have any objections either. Sometimes I wonder if they just humor me, but from the start they have made it clear that I am in charge. I love my doctors and have every confidence in them which I think is as important as the treatment. 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. I also learned today that the RN mentioned in my original post is still with us and her daughter is about to be married. That really made my day! I'm aware that I may be facing some rough roads ahead, but at this point I feel good about this. The best part is that I will only be working from about 9:30-3 everyday which is a dream. I'll get home early and be able to spend more time with my son. Thank you all for your support. Jenny Quote Link to comment Share on other sites More sharing options...
Tiny Posted April 15, 2003 Share Posted April 15, 2003 Best of luck on your treatment--your confidence in the plan will surely only benefit you. Prayers coming your way. Quote Link to comment Share on other sites More sharing options...
ginnyd Posted April 17, 2003 Share Posted April 17, 2003 Jenny While my husband has only been having 1 treatment a day, he has been taking the carafat, right before and right after treatment and then am and pm at home on the weekends. So far no esophagitis. Good luck. Quote Link to comment Share on other sites More sharing options...
john Posted April 18, 2003 Share Posted April 18, 2003 Is it actually twice the dosage, or is it hyperfractionated. Lower dosages but given more often? Anyway for the person with the cardiomyopathy or anyone else taking chemo. Coenzyme Q10 may help prevent heart problems caused by chemo. It is rather expensive for a supplement but probably worth it http://www.fightingcancer.com/CoQ10.htm http://www.ncbi.nlm.nih.gov/entrez/quer ... t=Abstract http://www.cancer-survivor.org/alternat ... ents.shtml Quote Link to comment Share on other sites More sharing options...
Jenny G. Posted April 18, 2003 Author Share Posted April 18, 2003 John, You are an excellent researcher! I had just bought a big bottle of vitamin E before my diagnosis and was going to start taking 500 mg a day. Before this, I had thought that heart disease would be my downfall. Dad died at age 42. Oncologist thought, to be on the safe side, I shouldn't take it because although there is no proof, it may help protect the cancer cells as well. This might work in the same way, as an antioxidant? I'll definitely see what he says. Jenny Quote Link to comment Share on other sites More sharing options...
Jenny G. Posted April 19, 2003 Author Share Posted April 19, 2003 Hi everyone, 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. Any ideas what this is about? 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. Thanks for the "big ears". Happy Easter. Jenny Quote Link to comment Share on other sites More sharing options...
Tiny Posted April 19, 2003 Share Posted April 19, 2003 Jenny, Things are sounding GOOD, so far. I'll be praying they continue hopping along that way for you. Quote Link to comment Share on other sites More sharing options...
SandyS Posted April 19, 2003 Share Posted April 19, 2003 Jenny - I too had unexplained periods of "high energy" that DIDN'T coincide with where my blood levels were at. I think it's more emotional than anything. You expected to feel worse, and you don't, so you're HAPPY! That's a good thing. (I almost felt like a had a "nesting" surge like when I was pregnant........had to get certain things done.........) So enjoy your weekend! Just listen to your body - and when it says "I'm tired", let it rest - it's a big part of healing/recuperating. Happy Easter, SandyS Quote Link to comment Share on other sites More sharing options...
Fay Posted April 19, 2003 Share Posted April 19, 2003 Hi Jenny, I am glad to see they are using amifostine. I did a lot of research on it, but it was not being used in Canada yet for Lung radiation, and only had been used in Head and Neck radiation a couple of times. I spoke with an Onc. in the US that was doing a trial with it, and results looked positive. If we really wanted we could have imported it from the US at a cost of about $30,000 with a lot of paper work. We didn't and Mom did suffer esophagitis, but she did all right. Taking aloe vera juice helped. I just wish there was something to eliminate the risk of radiation pneumonitis, as that is our major problem now. Best of luck with your treatments. Faylene Quote Link to comment Share on other sites More sharing options...
Laurie Posted April 19, 2003 Share Posted April 19, 2003 Hi Jenny, I love the bunny! Happy Easter to you! I'm so glad to here that you are doing so well. Energy too! Thats such a blessing! Keep us posted and will pray for continued good news. Laurie Quote Link to comment Share on other sites More sharing options...
cathy Posted April 19, 2003 Share Posted April 19, 2003 HI Jenny...glad to hear your first week went well....Hang in there....cathy Quote Link to comment Share on other sites More sharing options...
Jenny G. Posted April 27, 2003 Author Share Posted April 27, 2003 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. Jenny Quote Link to comment Share on other sites More sharing options...
ginnyd Posted April 27, 2003 Share Posted April 27, 2003 Jenny I was getting nervous since you hadn't posted for awhile. So glad to hear all is going well. Skip the crispy chicken. Quote Link to comment Share on other sites More sharing options...
Guest canuckwebgrrl Posted April 28, 2003 Share Posted April 28, 2003 Keep up the great work Jenny! Quote Link to comment Share on other sites More sharing options...
Jenny G. Posted May 3, 2003 Author Share Posted May 3, 2003 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. I'll update again with any long term effects and hope this has been of some help. I am, at this point, glad I had the 2x day treatments. Besides the hopefully added survival benefits, it went by very quickly. One of the main reasons this is not used more is transportation issues. I was the only one in this practice receiving 2x daily at this point so it still isn't commonly done here. Wishing you all the best! Jenny Quote Link to comment Share on other sites More sharing options...
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