jorja Posted March 23, 2005 Share Posted March 23, 2005 For those of you who've had radiation pneumonitis, can you please tell me what your symptoms were? How long did it take to recover? What other complications did you have? I would really love to hear responses because my dad seems to have had this for close to a month. Is this normal? I am really scared...... He still does not have an appetite....is this normal? or should we be worried........ Jorja Quote Link to comment Share on other sites More sharing options...
Geri Posted March 24, 2005 Share Posted March 24, 2005 Hi Jorja, sorry to hear that your dad has pneumonitis, I had it just after my tx had finished. My only real symptom was extreme shortness of breath when I moved around. Sitting still it was not an issue but walking through the house or worse, going up the stairs had me panting and wheezing to beat the band. I was put on steroids for a while, but couldn't take them for long as the sweating and increased heart rate they caused were in some ways worse than the s-o-b. My onc told me that the usual tx for pneumonitis was either steroids or do nothing, he said that if the steroids didn't get rid of it then usually time did and hopefully it would go away as quickly as it came. After a few months of no tx I noticed that the s-o-b had gradually gone and I was able to move around at my usual pace without any problems. I don't have any symptoms now, and haven't had any for a very long time. Back then it seemed that I would never be able to walk quickly again without everyone within a hundred feet listening to my every breath. Needless to say I alarmed quite a few people when they walked up a flight of stairs with me! Hopefully your dad will have the same outcome as me and his pneumonitis will soon be over. Take care Geri Quote Link to comment Share on other sites More sharing options...
jorja Posted March 24, 2005 Author Share Posted March 24, 2005 Hi Geri, THANK YOU SOOOOO MUCH for sharing your experience! You have made me feel about 100% better! I am really scared.....but knowing that others have gone through this and have overcome it makes a world of difference! Jorja Quote Link to comment Share on other sites More sharing options...
Joe B Posted March 24, 2005 Share Posted March 24, 2005 Jorja, If you do a search on radiation pneumonitis (look above for "search link") you will find a lot of good discussion on the topic., I had a mild case... coughing that lasted a couple of months.... I pray everything returns to normal... Joe Quote Link to comment Share on other sites More sharing options...
SharKats Posted March 24, 2005 Share Posted March 24, 2005 Hi, I developed a case of radiation pneumonitis after 5 weeks of chest radiaiton - fever, extreme SOB, weakness. Was given steroids and antibiotics. I worsened and ended up in the hospital for 2 weeks. They performed another bronscopy and found some additional lung problems but upon release and with inhalents and cough meds, etc., it went away and I got back to normal - whatever normal might be w/this disease. I just think it's something that should be watched closely and the doctor informed if it persists. Wishing your Dad the best! Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted March 24, 2005 Share Posted March 24, 2005 Hi Jorja For me, radiation pneumonitis has been a huge hindrance in me finding my way back to health. For some reason, for a handful of us who have gone through the radiation, the scar tissue continues on and on and doesn't stop. That has been my experience. I had been seeing a pulmonologist regularly, but it was a chest xray, a pft and a handshake and see you in three months. All the while I kept getting more and more short of breath and fatigued. I was under the care of a pulomologist who believed in supervised neglect. I finally switched pulmonologists. And I am glad that I have. She put me on high dose steroids to get the inflammation stopped once and for all. The scarring that has taken place has created permanent damage to my radiated lung to the point of internal collapse and nonfunction. There were areas on the CT scans which were starting to show advancing pneumonitis. With the steroid therapy of only a month, these newer lesions were able to be reversed. The other older lesions showed more densities or advancements in the disease. Yes interstitial fibrosis is what happens with chronic pneumonitis. I know that my situation is not common, but it is not uncommon either. I think I may have read statistically that it is a one or two percent occurrence. Pneumonitis is not anything to take lightly. I think that my brother, Dick, may have died from this. It is my understanding that steroids will usually clear it up, but it must be treated until it is ALL gone or the inflammation will just come back. A GOOD pulmonolgist is the way to go, in my opinion. Best of luck with this Jorja. Cindi o'h Quote Link to comment Share on other sites More sharing options...
jorja Posted March 24, 2005 Author Share Posted March 24, 2005 Thank you again to everyone for their responses.... When my dad was discharged from the hospital, I saw his papers and it there was mention of fibrosis. All the search I've done doesn't sound very reassuring. He is on oxygen right now because when he walks around his oxygen level goes down...when he is sitting it is fine. I realize that this will take a while to heal but how long....he is still coughing. He was not given any steroids so maybe this is something i should ask the doctor about?! Thanks again everyone, you are in my thoughts everyday.... love, jorja Quote Link to comment Share on other sites More sharing options...
deruo Posted March 25, 2005 Share Posted March 25, 2005 Jorja, I'm a little late writing to you as I've been at the hospital quite a bit with my mom. It looks like she's got pneumonitis, but it hasn't been confirmed 100% yet. I can tell you that like you, we've been very concerned with her lack of appetite, which has been for several weeks now. The hospital staff said that they are more concerned with patients drinking than eating. This makes sense I guess since you can go for a long time without food, but only a very short time without fluids before things start shutting down. Please keep us informed as to your dads progress. It's nice to know that things will get better for mom as this past week has been very scary, though I too, am a bit worried about this fibroid business. d. Quote Link to comment Share on other sites More sharing options...
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