radiation pneumonitis

[nursedisel]

I have radiation pneumonitis.  I guess it could be worse, but it is significant.  It started right after radiation ended (within a week)in september of this year.  I had terrible chest pain taking even the most shallow breath, shortness of breath, fatigue and a slight temperature.  My heart/pluse/respiration rate was also very high.  I had a had time having the rad/onco to take me seriously despite too murky x-rays and finally a cat scan that was pretty messy. Im currently down to 20mg of prednisone daily, nexium 40 daily and bactrim 3x's a week.  My pulse and respiration rates are fairly normal when no doing anything but working around the house my pulse rate is over 100/120 and resp 20-32.  I started pulmonary rehab but it's not anything.  I work as a school nurse on the west phila boarder, it's a terribly hectic job that requires multiple tasking with frequent fights, injuries and arrests in the school.  Kids also have serious health issues too.  I'm really scared that my lungs will not recoup and i'll have a heart attack when i return to my job.  i also have this "pulling" sensation still, when i inhale.  It's really very annoying although the original pain is gone. Could anyone respond who has had this problem.  I 'm afraid that my oncologist (who finally said "no one gets out of therapy with something" huh!) and my pulmonary specialit are being honest with me about how this will resolve.  could you please respond to my yahoo mail address is you have any information.  Thanks Rose McCarthy
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[athena126]

Dear Rose:
Your problem sounds exactly like mine! I too finished radiation in September and within a week came down with severe radiation pneumonitis.  I am in my third month of prednisone.  I was down to 10mg qd and was doing well until I went down to 5mg, now I am back up to 20. I too could not get my rad onc to take me seriously. Ended up with a pulmonologist who did listen. Both he and my oncologist tell me that this could takes months to resolve. Resoultion apparently meaning the progression of the active pneumonitis into a stable fibrosis. You do not mention how many lobes are involved? My onc tells me once the fibrosis stablizes I will not even notice the loss of lung volume.  I have spoke to other women, who tell me this takes about a year to resolve! Very discouraging! I too am a nurse and found that taking 25mg Lopressor prn for tacycardia worked well. My onc told me the prednisone can cause the tachycardia. I use an incentive spirometer, flovent and take lots of antioxidants. I am sorry you are going through this. I have a feeling this isn't as rare as the rad oncs would like us to believe. Please hang in there. I think eventually we will both be fine.
athena126

[CCF-RN,MSN-rf]

Dear Rose:  As this is a forum, we cannot respond to your personal email but others who participate in the forum might be able to.  There is a post from the weekend on the subject of radiation pnuemonitis with a comment.  You might want to comment on this forum with these two individuals.  Radiation pneumonitis is a rare complication of radiation to the breast.  If you'd like to learn more about it check out www.chemocare.com.  Click on Managing side effects, then scroll down to lung problems and click on this.  We certainly hope that this improves for you.