Prednisone for radiation pneumonitis

Posted by dougmck @dougmck, Jan 9 6:56pm

I had my fourth lung nodule since 2018 radiated almost a month ago and four days ago felt like I was a little short of breath while at the gym. The next day I felt like I was developing a chest cold, and then the night before last I ended up in the ER with extreme wheezing and I could barely breathe from shortness of breath. My radiologist has told me to watch for pneumonitis, but this is the first time I've ever actually experienced it. The ER doc gave me five days of prednisone and I'm amazed at how 90% of my symptoms are gone after only two doses. I'm curious, however, how common it is for the pneumonitis to return after stopping the medication after the fifth day? Has anyone had any recurrence like that, and if so, does it return as acutely as it did initially?

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dougmck | @dougmck | Jan 10 2:07pm

Thanks. My radiologist has been out of town and is returning today, I left all the details with her assistant a couple of days ago. I had 50GY from the CyberKnife a little over three weeks ago, re-radiating a nodule that we had taken care of in 2018 but came back as cancerous again. The 5-day course of 60mgs. of prednisone I've received from the ER took away a lot of the wheezing and shortness of breath, but I'm still having to take deep breaths if I'm exerting myself very much. I have two days of the course left, no tapering... I'm feeling a little doubtful this is going to be enough to resolve it. Hopefully I'm going to hear back from the radiologist today, as it's Friday.

nanajan26 | @nanajan26 | Jan 11 8:32am

In reply to @tumanic "My non-expert thought is that a 5 day taper for pneumonitis is brief, but obviously I..." + (show)

I received heavy doses of steroids in the hospital for 3 days & sent home with 9 days worth after. Cleared up my pneumonitis but my taste is still off after being on Tagrisso. Starting another immunotherapy in February but worried about side effects. If I develop bad ones, will either stop or see if steroids will make enough difference to stay on it.

loulou2023 | @loulou2023 | Jan 11 9:07am

2 weeks after finishing radiation i had a mucus plug block my lower lung causing it to collapse. I also have radiation pneumoniatis. I am not not having immunotherapy as it didn’t work the first time. This is my third time with lung cancer since 2014.
Doing much better with low dose dexamethasone, 1200 mg guaifensin,albuterol for nebulizer and well as saline solution to nebulizer.
Other big issue has been a high resting heartrate of 120!!!
Checked out by heart doctor but no cause found. They started me on beta blockers but so far no success.
The cancer is a hand full to deal with on its own but add all the other stuff and WOW..Be strong be positive. Watch your symptoms closely!!!

loulou2023 | @loulou2023 | Jan 11 9:12am

I originally went out a short 5 day dose and yes mine came back. Watch your symptoms and let the doctor know immediately if you start having issues.

sharon72 | @sharonsturdivan | Jan 11 10:10am

In reply to @dougmck "It seems to be helpful for me during the day but I'm still waking up with..." + (show)

I also experienced lack of taste and smell with the pneumonitis. Once finally put on prednisone (more than a month later) taste and smell returned.

dougmck | @dougmck | Jan 11 10:49am

In reply to @sharonsturdivan "I also experienced lack of taste and smell with the pneumonitis. Once finally put on prednisone..." + (show)

I think mine is coming back, but it's happening very slowly. I can sort of smell coffee if I put my nose almost right into the bag, lol...

dougmck | @dougmck | Jan 11 10:58am

In reply to @loulou2023 "2 weeks after finishing radiation i had a mucus plug block my lower lung causing it..." + (show)

I understand totally what you're going through. I had a very large lung tumor treated with chemo and radiation in 2008 and was cancer free for ten years. In 2013 I was diagnosed with bladder cancer but treated successfully with BCG. Beginning in 2018, I've had four malignant lung nodules we've radiated, and this one we re-radiated because it became cancerous again. This week I learned through an MRI it looks like I now have prostate cancer as well. This disease has become a nightmare for me; getting tired of fighting this battle that never seems to stop. After this experience with pneumonitis, I'm really reluctant to begin immunotherapy after hearing about all the negative side effects people are having.

loulou2023 | @loulou2023 | Jan 11 11:15am

In reply to @dougmck "I understand totally what you're going through. I had a very large lung tumor treated with..." + (show)

I went through immunotherapy with durvalaumb…aka infinzi.
I not no problem with it other than it didn’t work for my cancer lol.
Give immunotherapy a try …you can always stop!!!

dougmck | @dougmck | Jan 11 11:30am

In reply to @loulou2023 "I went through immunotherapy with durvalaumb…aka infinzi. I not no problem with it other than it..." + (show)

My PD-L1 status is 0, so I don't know how effective immunotherapy will be for me. I agree it's worth a try, but the long-term side effects I keep reading about are making me pretty hesitant, especially if I don't get any positive results from it cancer-wise.

nanajan26 | @nanajan26 | Jan 12 9:36am

In reply to @loulou2023 "I went through immunotherapy with durvalaumb…aka infinzi. I not no problem with it other than it..." + (show)

That's what they want to put me on after Tagrisso gave me pneumonitis. Am worried I'll develop same side effects and it won't keep the cancer under control. Don't know what they would do next

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