Fay A. Posted April 19, 2005 Share Posted April 19, 2005 Folks, I have limited experience with radiation treatments. I had 33 treatments to the right bronchial stump and subcarina last year. What I also had were daily Amifostine injections to go along with the daily Radiation treatments. If you look at an illustration of the lungs and subcarina you'll see that this is the area where the two lungs branch off the trachea. I believe that the reason I do not have severe radiation pneumonitis is because the Amifostine Injections afforded some protection from radiation damage to the normal tissue. The injections can be rough. They can cause severe headache, nausea, skin reactions and pain at the injection sites.....but if you find a way to handle the negative side effects the end result is that you may very well be rid of the cancerous tissue, and still able to have your lung(s) exchange gases fairly well. I'm very glad I took the injections. This wasn't something that was offered to me. I had to request it, and then argue for it with both my medical providers and my insurance. But in the long run I think having it has been cost effective for all of us. Especially me! Quote Link to comment Share on other sites More sharing options...
karen335 Posted April 19, 2005 Share Posted April 19, 2005 Hi Fay, I was offered the injections. I had two injections and couldn't handle the effects. I had really bad,bad hedaches and nose bleeds. It was awful. My insurance would pay, but I couldn't handle them. Are you getting the shots again? I didn't really under-stand the purpose as I was newly dx. Thanks, Karen Quote Link to comment Share on other sites More sharing options...
Addie Posted April 19, 2005 Share Posted April 19, 2005 I agree, Fay. My rad. onc offered up the Amifostine shots when I was due to have my chest radiation. Insurance paid...no problem. As I recall..the shots cost about $800. EACH!! The rad. onc said not everyone can tolerate them...but I did tolerate them pretty well, except for the last 2-3 shots (of the total of 31) which left huge red reactions on both hips and one side of my tummy...and itched beyond belief for a couple of days. The red marks lasted for 2-3 weeks. But aside from a day or two right after radiation ended, I had only mild esophagitis for a couple of days...and that was it! I was getting chemo at the same time...so my appetite wasn't huge....but I maintained my weight and I DID eat without problem, throughout radiation. I'm convinced Amifostine made the difference. I was always glad that I tolerated the shots without many problems. The shots themselves can cause nausea...so my instructions were to take a Zofran pill each day, 1/2 hour before my injection. I never did get sick...but there was a day or two when I didn't get the injection, either because I forgot to take the Zofran....OR was already a bit nauseated. So...they skipped the shot for that day...but I had the radiation anyway. Quote Link to comment Share on other sites More sharing options...
Hebbie Posted April 19, 2005 Share Posted April 19, 2005 I never even HEARD of these shots!!! Quote Link to comment Share on other sites More sharing options...
Fay A. Posted April 19, 2005 Author Share Posted April 19, 2005 I'm not receiving the shots now. I wrote this for those who are just starting out and facing radiation treatments, and after having read of so many of us who are left with severe radiation pneumonitis. I have some residual respiratory problems from all I've gone through, but I believe the reason I am as well as I am is because of those injections. I just wanted people to know that there is something available that may help to mitigate the damage. Informed patients...it's what we're supposed to be. Quote Link to comment Share on other sites More sharing options...
Hebbie Posted April 19, 2005 Share Posted April 19, 2005 I wish I had been informed! Quote Link to comment Share on other sites More sharing options...
jcawork Posted April 20, 2005 Share Posted April 20, 2005 Hi, I chose not to have them. Could have, got mighty close, insurance okay, but then said forget it. I was told only helps w/ esophogal burn when it helps. I was told it only helps a % of people but when it does it helps a lot. I was told it didnt help w/ pneumonitis, that this has more to do w/ sites shot and your personal inflamatory reponse. I have had pneumonitis since the last day of rad which is uncommon, most people dont get it for 6-12 months post rad. I am very allergic and got freaked out at the allergic issues. Took a roll of the dice and I am glad I did, but there was no way for me to know if I would or I wouldn't. I did not get much esopho stuff, very mild could always eat. As ususal..... Jen Quote Link to comment Share on other sites More sharing options...
Fay A. Posted April 20, 2005 Author Share Posted April 20, 2005 I think it's interesting that we are given information that is, many times, contradictory. I was told the purpose of Amifostine was to mitigate damage from radiation to non tumor tissue, wherever scatter may occur within the body, including the chest, as well as the esophagus, etc... It is also supposed to help with negative side effects from the Platinum based chemotherapies. Which is why we need to work as hard as we can to educate ourselves on what is and isn't valid. Relying on what we are told as an 'absolute' is not very wise, in my opinion. Below is a link to the National Institute of Health's medline drug information on Amifostine. http://www.nlm.nih.gov/medlineplus/drug ... 03557.html Quote Link to comment Share on other sites More sharing options...
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