bijou Posted November 9, 2005 Share Posted November 9, 2005 Hello Everyone - I'm new here , My father (74 years old) was diagnosed with stage 3b NSCLC in January 2005. After all the tests, he went on two rounds of chemo and one round of radiation, finishing in mid July. He went on a trip to Europe for a conference for a month after that and felt great for most of it, but returned with a choking cough. He received scans in October and all of his tests were clear. We were so excited about this, but he has since been diagnosed with Radiation Pneumonitis. I've read a ton of information on this, but it goes anywhere from it clearing by itself to death from it. He was prescribed predisone, which he took faithfully for a month and then did the taper as required, but then the choking cough came back with a vengeance. He said he almost passed out on several occasions. He has now gone back on the prednisone and it is working somewhat. This is very scary for me because he lives alone. I have asked if he wants me to come and stay with him, but he doesn't want anyone 'fussing' over him. I worry he is going to choke to death, as when I am on the phone with him, he has terrible coughing fits. I'm wondering if there are other people here who have gone through the same exerience and how they have dealt with it. Thank You for any insight you may provide Quote Link to comment Share on other sites More sharing options...
Donna G Posted November 9, 2005 Share Posted November 9, 2005 Sorry, did not have that problem allthough I know others have. I just wanted to welcome you to our family. Did you post a question about this in the Ask the Experts ribbon? Donna G Quote Link to comment Share on other sites More sharing options...
Kasey Posted November 9, 2005 Share Posted November 9, 2005 bijou, I did not have radiation pneumonitis, but I will bet there will be some "experts" who come along soon to answer your questions. Glad that your dad was on a month long trip to Europe. He must be doing pretty good, huh? Glad to "meet" you and stick around to get the info you need. Kasey Quote Link to comment Share on other sites More sharing options...
shineladysue Posted November 9, 2005 Share Posted November 9, 2005 Hi, I can only add that my husband had pneumonitis caused by chemo. His began with a dry, hacky nonproductive cough and rapid progression of shortness of breath. It showed on CTscan however as a kind of ground glass type opacity . Pneumonitis is inflamation of the lung and is treated with prednisone. My husband was also put on oxygen to aid his breathing. The dosages of prednisone were prescribed starting with 60 mg for 1 week, 50 mg for 1 week and 40 mg for 6 weeks .That therapy did work pretty well with my husband. AT the end of the 6 weeks he was gradually dropped down on dosage. I don't know if this helps. Every case is different. Just thought I would share ours. God Bless you. Sue Quote Link to comment Share on other sites More sharing options...
Don M Posted November 10, 2005 Share Posted November 10, 2005 Hi: I have not had to deal with the issues your dad is dealing with. I would like to welcome you to the site. Don M Well, I did have a period of a couple of months after my last surgery where I would have a dry retching cough, every time I bent over. Sometimes the coughing fits would cause a short blackout. My doc told me that the blackout was due to the blood supply to my brain temporarily getting pinched off during the spasms. I never got any treatment for it. It just went away eventually. The theory was that my right lung stretching after a left pneumectomy caused an irritation in my lung and that brought on the cough. I have never been treated with radiation and don't have radiation pneumonitis. I don't know if it is possible to actually die from a cough, it seems to me that if you pass out, you would start breathing again. I hope the prednisone helps your dad. Quote Link to comment Share on other sites More sharing options...
midge Posted November 10, 2005 Share Posted November 10, 2005 I had it after I completed Gemzar..it apparently can cause radiation pneum. I was on a tapering dose of Prednisone for one month (started @ 60 mg daily). It worked, no more cough. If the cough is still going on while on the Prednisone, check into a suppresant cough med to help. Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted November 10, 2005 Share Posted November 10, 2005 Hello and welcome to our support family.I have had really severe coughing fits on and off for a couple years now.Usually they find nothing wrong.I take robitussin DM to supress the cough.Sometimes it really hangs in there tho. Mabe he should request a broncoscopy.They have found problems with me by doing that and the scans never showed those problems. Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted November 10, 2005 Share Posted November 10, 2005 hello. And welcome. I have radiation pneumonitis, still 2 years and a half years after treatment, which is RARE. I have been on prednisone now for almost a whole year. The doctor that I work with is a pulmonologist on a heart/lung transplant team at a University Medical Center. She said that to treat radiation pneumonitis "effectively", that the inflammation MUST all be resolved (with the prednisone) or the pneumonitis will continue to return. Hope this helps. Any questions, pm me. Good luck. Cindi o'h Quote Link to comment Share on other sites More sharing options...
jorja Posted November 12, 2005 Share Posted November 12, 2005 My dad had radiation pneumonitis. Back in February he developed a fever and had a bad cough as well. He was admitted and they gave him antibiotics. He returned home with oxygen. Later they discovered (during a CT scan) that his lung had collapsed. He was then admitted and they put a chest tube in him. He was/is taking cough syrup (I think it is cortisone) for the cough. Today he feels good but is still on occasional oxygen. The oxygen is at home and when he is not working he wears it. Once a month he gets his oxygen levels checked and they get better and better. sorry for a long post. It takes time to recover from radiation pneumonitis. My dad was never on prednisone because his onc. didn't think he needed it. Also they don't like giving it to patients. it takes time.... love, jorja Quote Link to comment Share on other sites More sharing options...
bijou Posted February 24, 2006 Author Share Posted February 24, 2006 Thanks for the warm welcome. I have not posted since coming here a few months back. My father is still suffering with pneumonitis and it's been over 5 months now. He is on 20 mg. of prednisone daily and takes hycodan syrup occasionally, when he can't breathe. He continues to get exercise and stays strong. He made it through a bad cold, so that is a blessing. We are still wondering if there are any new suggestions out there to try, instead of the prednisone. as of course this is taxing to his system. He doesn't want to use oxygen therapy, because the thought of an oxygen tank in the house is pretty scary to him (although I wish he would just have it on hand). I've spoken to him on the phone after he has walked up the stairs just before the phone call, and it's pretty scary being 1500 miles away and hearing his raspy breathing. He sometimes wakes up in the night feeling as though he is suffocating and this is disheartening to me, especially since he is going this alone. He is not worse, but he is not really getting better. It's kind of stabilized itself, but it definitely dampens his quality of life. Any new suggestions would be most appreciated. Thanks Quote Link to comment Share on other sites More sharing options...
Don M Posted February 24, 2006 Share Posted February 24, 2006 Hi: I don't have any suggestions. I can only offer my best wishes that your father's breathing improve. Perhaps continued exercise would help. Don M Quote Link to comment Share on other sites More sharing options...
Kasey Posted February 24, 2006 Share Posted February 24, 2006 Has your Dad seen another doctor for another opinion??? I have not had this problem, but it seems so many months with no improvemenet is not satisfactory at all. I would seek out a second opinion. Kasey Quote Link to comment Share on other sites More sharing options...
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