hillham Posted March 30, 2023 Posted March 30, 2023 Hello all, I haven't posted in a while, but check in from time to time and often get a lot of encouragement from all the great folks here! I'm doing well. In a couple weeks it will be two years since my initial diagnosis of stage 3b Ros-1 NSCLC. My treatment consisted of four rounds of cisplatin and pemetrexed, plus 30 days of concurrent radiation. I've been fortunate that the treatments were very effective and the cancer has not returned. I am not on any medication for now. This last round of scans absolutely terrified me because I've basically been coughing on and off since December, and sometimes I have a slight wheeze when I breathe. It's like I constantly need to clear my throat. This is much worse when I lie on my back. For a while my coughing was pretty intense, but now it's mostly after I exercise. I still run 3 or 4 days a week and sometimes at the end of a run, if people see me, they think I have the plague or something because I'm hacking up a lung, as they say, which is pretty embarrassing post-covid! My oncologist says my latest scans are completely stable and the problem is most likely due to the fact that my lungs are damaged by the radiation treatment and there is fibrosis. He says air doesn't always move through my lungs properly, so it's hard to heal from a viral infection, which is what he thinks I had. Does this happen to anyone years after radiation treatment? Any thoughts?
Tom Galli Posted March 31, 2023 Posted March 31, 2023 Hillham, Good to hear from you again. I’ve wondered how you are. Short answer to your query: yes, I have frequent bouts of respiratory aliments, and yes they seem to take forever to clear. I had chemo radiation as my first line treatment almost 20 years ago. Since then, I am plagued by respiratory stuff and even had pneumonia on several occasions that landed me in the hospital. COVID was a saving grace. I walled myself off from society and didn’t have a single chest illness for nearly 3 years. We ventured on a late January cruise to test the waters and half way through I was down for the count coughing, wheezing and sneezing! Recovery took a month! Thankfully it did not test as COVID but I went down hard. I wish I had hopeful news to convey about enhanced resistance in time after treatment but I don’t. Stay the course. Tom PS—check in from time to time. We worry!
RJN Posted March 31, 2023 Posted March 31, 2023 Absolutely. I had a heavy round of radiotherapy a year ago, and now seem to catch every respiratory infection going. It is an almost guaranteed side effect of hanging out with small children that I get some sort of cough. I never used to be susceptible to infections, so was also initially really worried. In addition to probably being vulnerable due to treatment, my oncologist says that there are many, many more chest infections going around post covid, so the medical team is overwhelmed with worried patients. So you are definitely not alone, but likely shouldn’t be too worried either. Cheers, Rikke Tom Galli 1
hillham Posted March 31, 2023 Author Posted March 31, 2023 Thank you both so much for sharing. Really helpful. I've spent the last few months dealing with this, and had practically convinced myself that the cancer was back. I was dumbstruck when the scans came back stable again yesterday. Radiation therapy is no joke, but I guess it does the job. I've just returned from my follow up appointment where I saw the parts of my poor lung that don't work so well any more. It's a bummer, but I feel SO much better knowing that I can deal with this. We'll just have to cough all together! Oh, and Tom, thanks for saying that you worry. Such a nice thing to say. Have a GREAT weekend! H Tom Galli 1
Karen_L Posted April 4, 2023 Posted April 4, 2023 I developed radiation pneumonitis after chemo and radiation. It was characterized by coughing, SOB, and lower pulse-ox levels. Have a chat with your doc about possible pneumonitis and perhaps a course of steroids to ease what's bothering your lungs. They're not a picnic, but they saved me. Tom Galli 1
hillham Posted April 4, 2023 Author Posted April 4, 2023 Interesting. I thought for sure that's what I had, but the doc just said radiation fibrosis. I sometimes have a hard time understanding what qualifies as SOB. I can run & do cardio just fine (although lately I cough like a maniac afterward). My oxygen level is always around 98. He did mention steroids if it doesn't clear up soon. I'll talk to him. Thanks for the advice. I'm glad you're doing better Karen! Tom Galli 1
Karen_L Posted April 5, 2023 Posted April 5, 2023 Well, technically pneumonitis is a type of fibrosis....FWIW, I have the symptoms you describe when my asthma is acting up. My pulmonologist is the one who went after the pneumonitis with a vengeance. I went in to talk about something else, he started reviewing my chart, and then he announced he'd be managing my treatment. He's my main man now, especially in matters related to exercise. Have you had pulmonary function tests? Do you have a pulmonologist you can check in with? Tom Galli 1
hillham Posted April 5, 2023 Author Posted April 5, 2023 I did see a pulmonologist when I was first diagnosed, so I guess I should check in with him. I haven't had a pulmonary function test, but it sounds like I should. Thanks again! Tom Galli 1
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