pulmonary fibrosis?

[hillham]

Hi,

Here's an update for me. After chemo and radiation last summer for my 3B NSCLC, I've had two CT scans. One was on 8/6 and the other 10/6. Both showed NED, which made me very happy. However, I've had some chest pain and a dry cough for a while. When I take a deep breath, there's some pain. I've always been a runner, and over the past couple months I've noticed that with each passing week, I have a harder time running. I can still run 3 or 4 (very slow!) miles. I've heard from many people that their fitness doesn't ever really get back to where it was after the kind of treatments I've had. However, this latest scan showed "moderate fibrosis" in my lungs. My oncologist says it's from the radiation, and that it's most likely at its peak now. Do others have experience with this? It's unclear to me if it will get better, worse, or stay the same, or if there's much I can do about it. Any thoughts? 

As an aside, I began taking a TKI for my Ros1 mutation as an extra precaution, but my body wasn't having it, so I decided to quit. That's a whole other story! 

[Judy M2]

I still have some pneumonitis from radiation that doesn't require treatment. My PCP says that it takes a long time to clear radiation. For me, it's been a year and 10 months. 

Congrats on NED! 

[Tom Galli]

hillman,

Great to hear from you and your very good news on NED scans.

I'm also happy you are getting back into running. My situation resolves to difficulty walking, and I don't have a clue about radiation fibrosis and its affect on fitness. I also don't have any experience with TKIs but glad to know you are on the mend and out running again.

Stay the course.

Tom

[hillham]

Thanks Tom & Judy - I feel good about the NED of course, but I'm hoping that some of the side effects from the radiation go away or improve! 

[Judy M2]

My feeling is do what you can tolerate but try to avoid getting to the point of pain. I always check air quality before I go out for my morning walks with my dog. If it's in the range of "unhealthy for sensitive groups", I wear a KN95 mask and cut my walk short. Otherwise, I'll have shortness of breath all day. 

You didn't say if you've seen a pulmonologist. That might be a good next step.

Take care. 

 

[LouT]

Hillham,

Super news on the NED and you "only run 3-4 miles???  I do power walking (torn meniscus) 5 miles/day and I'm not sure, even with a good knee that I could run those miles.  Keep up the exercise and moderate it as necessary.  I've always believed (and my pulmonologist agrees) that the exercising is a great medicine and we just have to use patience in pushing ourselves to not set our recovery back.  Keep going and even if you can't do exactly what you did before you will be able to train to do more than you can now.
Lou

[hillham]

Thanks, I haven't seen a pulmonologist - might be a good idea. Yesterday the oncologist showed me the imaging of my right lung with all the scarring. It wasn't too pretty, but I guess if it keeps the cancer away I'll take it. I used to run a lot, and I'm very happy that I can do it at all now. It helps me cope with the psychological stress coming from my diagnosis and life in general. I do feel some discomfort in the chest when I take a deep breath, and I feel that 24/7 if I pay attention to it.  I also have a dry barking cough from time to time, mostly at night. During the day when I'm working (I'm a high school teacher) I don't notice it at all. My doctor says it's probably at its peak, (3 months post heavy radiation) but it's still unclear to me how much better it can get. Yes, I know that I have lung cancer, and I feel lucky that so far the treatments have worked. I'm going to keep running if I can and take it slow. We'll see over the next three months if things improve!  

[Karen_L]

After shortness of breath, a dry cough, and a significant curtailment of physical activity (I'm a bicyclist), I got myself to the pulmonologist who was part of my treatment review board, and boy am I glad I did! Turns out my pneumonitis had progressed plus I had a pulmonary embolism.

Post-radiation pneumonitis can develop months and months after treatment ends. My initial case was definitely in the radiation field. The progression was related to the immunologic agent I was being treated with. 

I hope things have gotten better for you. If not, I hope you'll consider a pulmonologist.

Karen

[hillham]

Karen,

Thanks for your post. Wow, I'm so glad you caught that. I feel quite a bit better and am not having problems with shortness of breath. I'll see how things look after my next scan. This is good to be aware of. Hope you're well.

 

[Rower Michelle]

Sorry to chime in late here, like you I was an endurance athlete, pre diagnosis rowed 10-15k per day.   After three years of targeted therapy I have radiation like scarring in my lungs.   I used to get really nervous when rowing because my heart rate quickly accelerated and I couldn’t catch my breath.

Through a lot of trial and error (mostly error) I have found the right balance. I can row 4K divided up into 1k pieces with 90 seconds rest in between.    

You might try the same approach, run one mile, walk 1/2 mile, run one mile or something along those lines and see if that helps.  No where is it written down that a 4 mile run has to be continuous.  Try and be patient and over time you will find a way forward.   Just keep going….

Michelle