I was just diagnosed with radiation pneumonitis. :(

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Emily2008
Emily2008 Member Posts: 605
edited March 2018 in Radiation Therapy - Before, During, and After

I thought I had sailed through 30 rad treatments fairly well. My skin was pretty uncomfortable toward the end, and the pain really peaked about 2 weeks post treatment, as my RO warned me it would. I was thankful for the heads up about that!

However, the likelihood of developing pneumonitis is so low with the way they construct the tangential radiation beams, and because of the breath hold technique in the newer facilities. Statistically, it's 1% of patients getting rads to the breast and chest wall. Well, I'm in the 1%, unfortunately. None of the women I know in real life who've undergone rads have had this, so I do believe it's uncommon. Therefore, I don't want to scare anyone; I simply want to provide information on my symptoms and treatment for anyone who wants to know, both now and in the future if someone searches this topic.

I finished rads 6 weeks ago. Over the weekend I noticed I had a dry cough that wasn't related to my throat or sinuses. It was coming from a strange sensation in my chest. After a couple of days of that alone, I noticed some tightness in my chest, then some pain in my lungs when breathing deeply, then difficulty breathing, then pain all the time, not just upon inhalation. I remembered reading about this issue somewhere, and I quickly googled my symptoms. I found it was likely pneumonitis, so I called my RO's nurse and told her what was going on. I was scheduled for a routine CT on Wednesday, so she scheduled me for Thursday with the RO so we'd have the full report by then. Sure enough, the CT showed lung airspace disease and the symptoms point to this condition.

The treatment is prednisone (steroids) for 6 weeks. 5 pills per day for 7 days, 4 pills per day for 7 days, and all the way down to 1/2 pill per day for 7 days. I believe the nurse said it's a total of 109 pills.My RO said I will fully recover, although it may take several months before I feel like I'm back to full capacity. I exercise 5-6 days a week, so this is a big deal for me. He did say I can gradually do some light exercise like slow walking, but I have to be smart about it and not exert myself.

I'm bummed I developed this condition, but thankful there is treatment. Incidentally, the period of time that it can develop is 1-6 months post-treatment. I was right at 6 weeks. So pay attention to your chest, lungs, and cough once you finish up rads. Again, not to scare anyone, but just to inform you that although it's not common, it can happen.

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  • MTwoman
    MTwoman Member Posts: 2,704
    edited April 2017

    Emily,

    I had to take a burst and taper of prednisone for an unrelated event, and let me just tell you that the higher doses might not be fun (depending on how high the total mg - "5 pills" doesn't give me enough info). I was on 200mg a day and that totally sucked. I was bouncing off the walls, hard to focus/concentrate and feeling like I wanted to come out of my skin. By 75mg I was okay again. I actually took some time off of work and had lots of distraction (mainly binge watching cooking competitions and then cooking :) ) to help me get through it. It also makes it hard to sleep, so be careful when you take your last dose. Just so you're prepared, hoping your dose is lower or you tolerate the higher doses better than I did!!

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  • Emily2008
    Emily2008 Member Posts: 605
    edited April 2017

    Okay, I just checked my dosage. It's 10 mg pills, so 50 mg per day at first, then going down. Wow, 200 mg is a lot! I cannot imagine taking 4 times the amount I've been prescribed!

    I noticed that I was up every couple of hours last night, and I figure it was the meds. I am taking it in the morning with the hopes that by bedtime I'll be okay.

    I'm concerned with stories of people who gained a ton of weight on prednisone. Since I can't walk through my kitchen without getting winded, I can't combat weight gain with exercise. So now I have to be worried about gaining weight, which is not good for cancer recurrence. I know it's relatively short term, but still. Ugh!

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  • Lexicoe
    Lexicoe Member Posts: 66
    edited April 2017

    Emily, sorry to hear that you're going through this! But thanks for the information, so we can recognize it if we are unlucky tool get it too.
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  • FightingTheFight
    FightingTheFight Member Posts: 75
    edited April 2017

    I'm really, really sorry to hear to hear this happened to you. Esp. after it seemed like everything had gone fairly well. I'm still going through treatment (theoretically, I'm considering quitting early) and it's hard to imagine something hitting you out of the blue after you thought you'd dogged a bullet.

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  • annoyingboob
    annoyingboob Member Posts: 558
    edited April 2017

    i just had partial breast radiation and developed a cough exactly 6 weeks after treatment. ro said 'extremely unlikely' its radiation pneumonitis. but a few weeks later, I'm still coughing. its better, but annoying.i do think its going away on its own, but why, other than radiation, would i get some kind of bronchitis? makes no sense. I'm going to wait it out bc it has not hampered me other than waking me at night with a cough, and i can still be active. but i sure hope it goes away completely without steroids....

    best of luck to you!! i always wanted to be in the 1%, but i guess i should have specified INCOME, not medical complications!!!!!

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  • Emily2008
    Emily2008 Member Posts: 605
    edited April 2017

    Hahaha, I said the same thing to my friend! I would have NO problem being in the 1% financial group. It's the annoying 1% medical problems that trip me up. Signals must've gotten crossed somewhere, lol!

    If you only have a cough, then I think it's not pneumonitis. I have significant chest and lung pain, heaviness in my chest, feel winded just walking through my kitchen, plus a cough. Not to say your cough isn't related to rads, but if it's going away on its own, I think you're safe.

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  • MTwoman
    MTwoman Member Posts: 2,704
    edited May 2017

    Emily, I think the weight gain is typically by folks who need to take it for longer periods of time. Taking it in the morning, and especially with food, should help with the night time wakefulness. Just remember that each step down on your taper will get better and better. 200 mg was awful, but 50 was okay.

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  • Bdagal
    Bdagal Member Posts: 40
    edited May 2017

    This post is a lil concerning.....I just finished rads on May 8.....just the last 4 or 5 days or so I have noticed pain /discomfort on breathing predominantly on the top of the right breast, but along the midline, along with corresponding pain/discomfort in the back, right along the shoulder blade (if I touch my front and back where I have the discomfort, it's like a straight line through my body). I've also had a cough that just won't go away (though I did develop a bad cough the week before I ended treatment). Guess I should be keeping an eye on this as I've never heard of this pneumonitis before! Hope you will be feeling better soon!!

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  • Emily2008
    Emily2008 Member Posts: 605
    edited May 2017

    Yes, keep an eye on things. From what I understand, pneumonitis can occur 6 weeks to 6 months post-treatment, so it may be a bit too early to tell for you. But it is an uncommon condition, so I wouldn't be too concerned. Just pay attention to your body and let your doc know if it persists.

    I ended up in the ER Friday night with serious lung and chest pain, fever, and heart palpitations. It seems the tapering dosage of prednisone I've been following was too soon, so my rad onc has upped the dosage back up to 40 mg a day. He says treating this condition is as much an art as a science. Very individualized based on the degree of pneumonitis.


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  • Brutersmom
    Brutersmom Member Posts: 563
    edited May 2017

    You might want to get it checked out. I developed a cough and shortness of breath followng radiation. It kept getting worse. Turned out I had a mild pneumonia. Dr. thought it was from the surgeries, stress, and treatments. Ten days on an antibiotic and the cough was gone.

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited May 2017

    Emily, Not to sound like a downer, but my close friend has been tapering Prednisone for over a year actually closer to two as she gets to a certain dose and the pneumonitis is back in all its glory. I am sorry that you're going through this but what you're experiencing sounds quite common for those in your shoes.

    Good luck -

    Amy

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  • Emily2008
    Emily2008 Member Posts: 605
    edited May 2017

    Ugh, that's been my fear. My docs are also concerned that I may be dealing with pericarditis as well or in place of pneumonitis. I'm having an echocardiogram tomorrow morning to see for sure. I don't even know what to hope for at this point, to be honest. It all pretty much stinks.


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  • Tineandjoe
    Tineandjoe Member Posts: 6
    edited February 2018

    i started with symptoms 4 weeks after proton radiation. I initially thought i had a cold but the cough was dry and felt like it came from my chest. It was confirmed as radiation pneumonitis after a catscan. They put me on 60mg a day of prednisone for 2 weeks and then tapered me down to 20 mg for the past week. 5 week starts into this and todayI have a tight chest again and it still hard to breathe again. I called the pulmonologist and I’m back up to 40mg a day again. He explained it’s very hard to get it u see come control and if if you at step dowm too fast, it will start all over again. I’m hating this! My face looks like a puffy round moon and even dieting I’m gaining weight.

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  • Cpeachymom
    Cpeachymom Member Posts: 518
    edited February 2018

    tineandjoe- Just wanted you to know you're not alone! I've been on steroids since mid November for pneumonitis, still tapering off. One month left...all the way down to 5mg now though, so very easy compared to the 60 we started with. My face is starting to come back to normal, but slowly. Sadly, my cough never went away completely, so I guess it's permanent. Weight gain... high dose of steroids through Thanksgiving, Christmas, and New Years...food and sweets and leftovers galore topped with Tamoxifen and Lupron for good measure. Sigh...oh well. At least I can breathe now, right??

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  • Tewks
    Tewks Member Posts: 105
    edited February 2018

    To everyone: Have you all done traditional radiation or Proton? I've had 8 Proton treatments and this is scaring the living daylights out of me!! I had to cancel chemo because of serious side effects, one of which was my MOs concern about developing congestive heart failure because I'd retained a lot of water. So when I looked into radiation options I chose Proton because it supposedly minimizes heart and lung damage. Is this not so??? Am I understanding all of this correctly or did I allow myself, once again, to be talked into something that's not exactly what I'd been led to believe?? I had bad feelings about chemo when it started, even told my MO it was a big mistake and it turns out my gut feeling was right.

    I've already had the mastectomy and flap reconstruction plus I had the sentinel lymph nodes removed and after surgery I was told that there was no more cancer, the surgery had been successful. So the chemo and rads are strictly preventive measures. In radiation I have to lie perfectly still for 40 minutes, with my arm positioned over my head and I'm now having some fairly painful discomfort in my chest where I imagine the surgical scars must be, right around my missing breast. I'd just like to know if this sounds familiar to any of you.

    My RO said to up the gabapentin from 300 mg to 600, thinking it would help with what he thinks is only aggravated nerve pain due to stretched scar tissue. I'm sorta buying that but not 100%. Could this really be just muscles stretching scar tissue?

    I'm probably not explaining this very well either as I'm still dealing with some pretty severe fatigue and my brain is sooooo foggy. Yes, I'm still alive, but geez this is turning out to be a whole lot more to deal with than I bargained for. I'd really appreciate hearing from you all...thanks!!

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  • Cpeachymom
    Cpeachymom Member Posts: 518
    edited February 2018

    tewks- so sorry things are not going well for you. I had traditional radiation though. If the pain is where your scars would be, then it probably is stretching. Radiation tightens the skin up even further. I stretch every day still to keep things moving, plus massage with vitamin e oil. My skin and scars look fantastic, it’s just my lung that is screwed!

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  • Emily2008
    Emily2008 Member Posts: 605
    edited February 2018

    Hey all! Just popping in here to say that I'm much better than I was. Don't assume you'll cough forever! I thought that may be the case for me, but I almost never have symptoms anymore. It just took a long time.

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  • carmstr835
    carmstr835 Member Posts: 388
    edited March 2018

    Hi I thought I would chime in here. I too, had radiation therapy. 7 weeks of tomotherapy radiation; 30 fractions including 5 bolus doses to the scar. They radiated my right chest, under arm, sternum, and clavicle. Completed Oct 24, 2017. Nov 22, 20017 I was admitted to the hospital with severe chest pain, fever, and not able to breath deeply. I needed my head to be elevated and could not lie flat. They were concerned about a pulmonary blood clot, the D-dimer was elevated. No clot and with no treatment, the fever and pain subsided. They gave me antibiotics to take when I left the hospital after 2 days but I felt fine so did not take it. About a week later, it came back, same exact symptoms, I just stayed home and kept my head elevated and it again went away in 3 days. It never came back, but they did do a CT scan of my lungs when I was in the hospital and found two 9 mm lesions that were new. My MO ordered a Pet scan and cancer markers. All negative in November, and the plan is to repeat the CT scan in January.

    In January, the CT scan results came back with ground glass inflammation covering my right lung and obscuring those 2 lesions. They plan to repeat the scan in end of March. I decided to involve a pulmonary specialist. I had that appointment last week and he has diagnosed me with radiation pneumonitis. He ordered a Pulmonary Function test, 6 minute walk and complete test as well as 5 special blood tests. He is under the impression, but not yet sure, those lesions seen in November, just might be the beginnings of my radiation caused inflammation, it is currently covering 15% of my right lung. I go back for his final diagnosis April 9. I have a feeling I will be seeing him every 3 months to keep an eye on my pulmonary function. The good part is I have no symptoms except my oxygen levels are slowing declining. They dropped from 99-100% every 3 weeks since May 2017 to last week it was 94-95%. I hope that is not a trend that will be continuing. I am concerned this might become scar tissue and then it is pulmonary fibrosis and that is incurable...Cancer is a horrible disease.

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  • Cpeachymom
    Cpeachymom Member Posts: 518
    edited March 2018

    Thank you Emily! I do still have my cough and STILL weaning off the steroids, but it does seem to be decreasing.

    carmstr- I was so paranoid about fibrosis. I went to my last pulmonologist appointment, after my lung ct scan showed mine had turned to scar tissue, expecting the worst. I asked him if we’re gonna be friends for life now, if I’m going to be on oxygen in ten years, if this was now going to get progressively worse. He said No to all and assured me that most likely I WILL get better. Even though it has turned to scar tissue. He did give me an inhaler in case I need it for exercising, but that was just precaution.

    The part that pisses me off is all the suffering we had to go through to get to a diagnosis. Like they’ve never heard of this side effect from radiation- it couldn’t possibly be from radiation. I’m glad you feel better.

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  • Fitz33
    Fitz33 Member Posts: 243
    edited March 2018

    I was recently diagnosed with radiation induced pulmonary fibrosis, 7 years after my radiation. After researching, I think I probably had radiation pneumonitis and thought it was astha getting worse. I'm glad to finally get this diagnosis as I've been having shortness of breath for awhile but it started to get much worse. I'm seeing a pulmonary specialist and taking quite a few inhalers and meds to try to stop any progression. I was probably given lots of side effect rad info but it wasn't like I would remember or would have taken the chance of not having rads, my tumor was deep, almost to the chest wall. I figure the rads helped save my life and this is one of the costs of having cancer. I've had 7 grateful years and am looking forward to more.

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  • Cpeachymom
    Cpeachymom Member Posts: 518
    edited March 2018

    Fitz, sorry you’re struggling, hope they get it under control. I agree, even getting screwed by rads, I would probably still do them. My tumor was also close to the chest wall, plus I ended up with one positive node and LVI. Rads or chemo at that point. All the choices we have to make suck!

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