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Pulmonary Fibrosis / lung scarring after Rads???

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2

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  • whatjusthappened
    whatjusthappened Member Posts: 178
    edited August 2019
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    Thanks macb04, I'll look into hawthorn extract. I actually used to take it to help with blood pressure. Can't remember why I quit.

  • Cpeachymom
    Cpeachymom Member Posts: 249
    edited August 2019
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    whatjusthappened-

    I was on steroids for 6 months to treat pneumonitis. They also tried the one week course for me and it did nothing after the first two days. That was after they made me do a useless round of antibiotics because “it could be pneumonia!” I pitched a fit when it didn’t work because there was no way I was going another two weeks without being able to breathe!

    Anyway, it started around 80 mg I think and was a very slow taper. I do have scarring, but no major lasting effects. I do get a deep dry cough in the dry winter months, that’s my reminder.

    It’s scary, and long term high dose steroids are scary too, but not being able to breathe meant I didn’t have a choice.


  • whatjusthappened
    whatjusthappened Member Posts: 178
    edited August 2019
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    My MO finally got back with me and is ordering a CT scan and an echo, and I'm to follow up with my RO. Holding off on more steroids until then.

    Cpeachymom, six months on steroids does indeed sound scary to me. I'm really hoping I don't end up needing them that long. Did you have a lot of side effects from them? I already have so many side effects from the Arimidex and Prolia.

  • Cpeachymom
    Cpeachymom Member Posts: 249
    edited August 2019
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    Is re-tiling the floor in the front hallway at 4 am a good or bad side effect? Lol 😂. You can’t sleep and you feel like you have tons of energy until you finally crash because your body needs sleep. That improved a little once I got down to around 40mgs.

    I gained maybe 10 lbs, but it came off quickly. Keep lots of fruit around because you want to eat constantly!! At least make it healthy.

    One of the worse things for me, aside from not sleeping is that you’re face will start to get puffy. Moon face, hamster cheeks, however you want to describe it, it’s separate from weight gain. It started to get better when I got down to 10 mg, but took probably two months to go away completely. I hated it!

    Oh, and a good pulmonologist should put you on preventative antibiotics too because steroids suppress your immune system. And watch out for thrush! Yes, like babies get on their tongues. It felt like a sore throat.

    So, yes, side effects. I had to take stuff to sleep, meds for thrush, and regular antibiotics all for having to take the steroids. Oh, and probiotics so the antibiotics didn’t mess up my stomach too much.

    I’m not trying to scare you, because if you need it, you need it. But no one gave me a heads up on all this!

    Good luck to you!

  • whatjusthappened
    whatjusthappened Member Posts: 178
    edited August 2019
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    Cpeachymom, thank you for the info. I'm still waiting for my tests and follow up appt. Thanks for helping me know a little what to expect. Seems like the snowball is just rolling down that hill...

  • macb04
    macb04 Member Posts: 756
    edited September 2019
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    I don't know that you need that long a time on Oral Steroids, why not do a shorter taper and use long term Inhaled Steroids like Flovent or even Spiriva?

  • whatjusthappened
    whatjusthappened Member Posts: 178
    edited September 2019
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    Just an update. I had a CT scan and my RO's office called and said that I still have infiltrate and so they are treating me for pnuemonitis/pneumonia- antibiotics and another week of steroids. I pulled up the report and it also mentions "fibrotic and nodular changes" in my lung. Another nodule was mentioned in the middle of the lung. The recommendation was that they follow up with a scan in six months make sure it is staying stable. The only thing they told me about when they called was the infiltrate. I don't see a doctor again until Nov. I'm freaking out a bit. Does this seem like enough to you guys?

  • Cpeachymom
    Cpeachymom Member Posts: 249
    edited September 2019
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    macb- I’m not sure. I do know the slow taper is so you don’t rebound. Like if you drop to the next lowest dose and your symptoms return you have to go back up to the last dose for a week or two and try again. That happened to me once during my treatment. I was given an inhaler after I finished treatment, just in case, but didn’t need it. Maybe they’re not strong enough?

    What just happened- They did find a new nodule on my lung as well. 6 months later it was gone. Apparently they’re pretty common. Good to watch it though.


  • whatjusthappened
    whatjusthappened Member Posts: 178
    edited September 2019
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    Cpeachymom, thanks for that. I did some reading and saw that lung nodules are not all that uncommon. I guess that's why they didn't mention it, but I wish my doctors would be more thorough in their explanations of test results so I don't have to resort to speculation. I was a bit surprised by the fibrotic changes bit. I thought fibrosis was a late-occurring side effect and I just finished radiation 10 weeks ago.

  • macb04
    macb04 Member Posts: 756
    edited September 2019
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    Fibrosis can start happening fairly quickly for some people. Rads start off an actively accelerated inflammatory process. Microvascular damage that can be progressive to a certain level, or for unfortunate individuals perpetually ongoing. Of course the bc industry has not got a clue over who is majorly screwed over that way.

    Most of the time they will pretend it is all in your head and couldn't possibly be caused by their darling radiation.

    I think that most of the doctors don't know much about how effective Steroid inhalers can be, and so default to the oral steroids instead. Oral steroids are very rough on your body if given for more than a week or two. Long term use of Prednisone weakens bones/increases blood sugar and risks of Diabetes and definitely increases susceptibility to infection and of course weight gain.

    Inhaled steroids should be an option with much lower risks of side effects after an initial 10 to 14 day oral steroid taper, as per a pulmonologist I know.


  • whatjusthappened
    whatjusthappened Member Posts: 178
    edited September 2019
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    macb04, I finished the antibiotics and steroids and am still coughing. So I think I might be in this for a haul. I'm supposed to call them back if the meds didn't work. I guess I'll see what else they want to to but will definitely mention the inhaled steroids. I don't think that long term oral steroids are going to mesh well with other conditions I've got. How did you manage to see a pulmonologist? Did you doctor send you or did you insist on it?

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited September 2019
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    does pentoxifyline help for lung fibrosis? thats what i am on to prevent fibrosis....

  • Cpeachymom
    Cpeachymom Member Posts: 249
    edited September 2019
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    what just happened- Your RO should refer you to a pulmonologist.

  • Tanmcl
    Tanmcl Member Posts: 2
    edited September 2019
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    Hi Ladies

    i came across this thread and am hoping for reassurance. i recently had a chest xray prior to my reconstruction surgery last week. Before going in, my surgeon said the xray came back noting "right apical pleural parenchymal/right apical opacity". The radiologist noted a question pertaining to it being related to radiation (as that was my cancer side) but had no x rays to compare to. My radiation was almost exactly a year ago. I had a chest xray in March that noted no findings. My surgeon said to try not to worry, that they dont necessarily suspect anything, but to repeat the x ray in 3 months. 3 months is a lot of sleepless nights worrying over this. :) Wondering if you have advice? should i push for an xray sooner? should i try to just relax and wait 3 months? ive googled this to bits and dont feel very reassured. anyone else have this issue a year later?

    thanks! xoxo

  • macb04
    macb04 Member Posts: 756
    edited September 2019
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    Whatjusthappened, you have to harass the RO or even your regular Primary Care doc to refer you to a Pulmonologist. I was lucky in that my insurance allowed me to self refer. I had to guilt trip several doctors/insurance company people on several occasions to get what I needed.

    Are you using an Albuterol inhaler to help control the coughing? I don't know why they are leaving you to suffer like that, without trying simple things like long term use of Inhaled Steroids( Flovent/QVAR) or things like Spiriva which is a daily inhaled steroid plus a long acting bronchodialator.

    I think you are going to have to have a melt down or a strongly worded guilt inducing session with one of these heartless foot dragging doctors to get them to really help you.

    It's way, way too early to say you are stuck this way when you really haven't tried everything.

    I mean, what was the point of the antibiotics? Unless you had pneumonia, it was a waste of time, and needlessly caused potental antibiotic resistance and altered GI microbiome.

    Can someone come with you who would be willing to speak up about this needless suffering for you? If I could, I would come with you and give them a piece of my mind.

    _____________________________________________________________________________

    Santabarbarian, here is the name of an Reasearch article discussing Pentoxifylline and Pulmonary Fibrosis from rads. It is an animal study, but I just looked quickly, and there might be more out there, hopefully some in people.

    Pentoxifylline Regulates Plasminogen Activator Inhibitor-1 Expression and Protein Kinase A Phosphorylation in Radiation-Induced Lung Fibrosis

    -----------------------------------------------------------------------

    Tanmcl, hard call. I know you are worried, but try to keep focused that this could all be an incidental finding. What I would suggest would be to see if the March Xray could be sent to this recent Radiologist for comparison of the most recent Xray. Remember that the radiation dose of even xrays is cumulative, and it is probably better to minimize that when possible. ( use the xrays you already have)

  • Cpeachymom
    Cpeachymom Member Posts: 249
    edited September 2019
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    what just happened- macb is probably right. I logged onto my portal and sent a message to every single one of my doctors and NPs and let them know I was emailing them all until someone did something because not being able to breathe for another two weeks was unacceptable. It worked.

    Edited to add- now that I think about it, it was my PCP NP, not one of my cancer docs who finally called in the script and got me in to see a pulmonologist. Good luck.

  • marijen
    marijen Member Posts: 2,181
    edited September 2019
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    Wow! Good for you Cpeachymom. Let us know when you get some feedback.

  • whatjusthappened
    whatjusthappened Member Posts: 178
    edited September 2019
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    Thanks ladies for the encouragement. I'm still new to all of this. I guess I thought that the doctors would really be looking out for me after a cancer diagnosis, but I'm finding that they don't really want to deal with the aftermath of their treatments. I tried to call today after school and speak to someone but they were already gone for the day. It's very hard to find time during the day to call doctors since I am a teacher with hardly a moment alone all day. I like the idea of leaving messages on the patient portal. I've never actually used that feature before, but I do have portals for both of my cancer docs. I have a good relationship with my PCP so if my RO doesn't step up I'll give my PCP a call.

    Macb04 I was not given an inhaler or anything. When they called to tell me they were calling in antibiotics, I said "so it's pneumonia and not pneumonitis?" The nurse said it could be both, that it was really hard to tell them apart from looking at the CT scan. She didn't even tell me about the fibrosis. I got the impression that they don't think it's that big a deal, but then again they aren't the ones coughing all the time.

    I do have family I could bring with me to my next appt. My son in particular gets really angry every time I have a coughing fit. Not at me, but at the situation. I don't have the energy to be angry.

  • macb04
    macb04 Member Posts: 756
    edited September 2019
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    Whatjusthappened bring your son along, and let him hand the doctor their heads.

    There is no excuse , absolutely none for their cavalier attitude to your suffering. Try the Patient Portal when you have time and energy.

    I would suggest you stop beating your head against the wall of indifference and give up on the bc industry docs completely who are not being helpful, and just go right on now to your Primary Care Provider. Your Primary Care Provider may actually remember you are a fellow human being deserving of kindness and compassion. Let your son fight for you, it will help him feel good about standing up for you, and frankly you sound too worn out to tackle this well for yourself.

    If you had Pneumonia and took an antibiotic, you would have considerable improvement just a couple of days after starting the prescription. If no improvement, then that is pretty definitive that it is a Fibrosis and bronchospasm versus infection from bacteria. This is not rocket science, and those bc industry docs should know better. As my daughter would say with utter contempt, DUH!

  • whatjusthappened
    whatjusthappened Member Posts: 178
    edited September 2019
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    macb04 and Cpeachymom, thank you so much for your advice about asking to see a pulmonologist. I did get my referral, and my PCP and RO actually agreed with me. I don't know that they would have suggested it if I hadn't brought it up though, and I wouldn't have thought to ask for it without your encouragement.

  • macb04
    macb04 Member Posts: 756
    edited September 2019
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    Here's rooting for you, Whatjusthappened to get a better answer.

  • whatjusthappened
    whatjusthappened Member Posts: 178
    edited October 2019
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    Ok, here's another question for you ladies with fibrosis who managed to get on inhaled steroids.

    How were your pulmonary function tests? Saw a pulmonologist and my lung function tests were in the normal range. For that reason he feels my cough must be due to something else (he's thinking GERD since I answered yes to occasional heartburn). He wants to put me on nexium to see if it helps. I don't want another medication needlessly, especially after reading the potential side effects of nexium (ironically one of the potential side effects is a cough). I'm beyond frustrated at this point. He showed me the scarring on my CT scan. I thought that's what causes the coughing- am I wrong? Now if I refuse to take the nexium we will be at a standstill treatment-wise since he feels we need to rule that out.

  • macb04
    macb04 Member Posts: 756
    edited October 2019
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    WHatjusthappened.

    Try Zantac instead of Nexium. Not as strong, and much lower profile of Side Effects.

    If you take Zantac 75mg ( OTC dose) twice per day, that will give you a clue if GERD could be part of your cough. You can do that easily on your own, just pick that up at a drug store.


  • mocame
    mocame Member Posts: 553
    edited October 2019
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    Whatjusthappened - Like macb04 said, take some Zantac and see if it helps. I have acid reflux and it usually happens after I eat, I'm nervous or anxious, or eat certain foods. Try to stay away from spicy foods, or course, tomatoes and tomato-based foods, fatty foods, greasy foods, and chocolate. If you do these things and it gets better, you might have GERD.

  • marijen
    marijen Member Posts: 2,181
    edited October 2019
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    Zantec has recently been recalled due to a carcinogen in the formula.


  • macb04
    macb04 Member Posts: 756
    edited October 2019
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    Well then TUMS, before each meal, and at bedtime. At least until the Zantac stuff is cleared.

  • whatjusthappened
    whatjusthappened Member Posts: 178
    edited October 2019
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    Thanks everyone for the advice. I'm going to try an acid reducer for a couple of weeks and see if it helps any. Gotta rule it out I guess.

  • simone60
    simone60 Member Posts: 952
    edited April 2022
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    My latest CT scan shows that I have lung fibrosis (stable) due to the radiation I received 20 years ago for adjuvant therpy. I don't have any symptoms so I am in shock. I'm in the process of getting a referral to see a pulmonologist. I was just wondering how others are doing with this disease.



  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited May 2022
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    I had some that I didn't know about until later. Never had any symptoms either that I know of. But since it's not bothering me we're not doing anything about it. Got bigger problems now! :)

  • simone60
    simone60 Member Posts: 952
    edited April 2022
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    parakeetsrule, yes I get it. Having M BC is a handful. I was reading what happens in the late stage phases of pulmonary fibrosis and it scared the sh*t out of me yesterday. Anyway, I'm better today. I'll look for a fb group