Pneumonitis?
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Pneumonitis?

› Forums › General Melanoma Community › Pneumonitis?

  • Post
    • August 12, 2016 at 3:32 am
    jennunicorn
    Participant

    I recall reading that some people have developed pneumonitis while on immunotherapy drugs. I have had these symptoms for the past week: deep cough with not a lot of mucus but not totally dry, burning feeling in lungs (like the feeling after a run or heavy exercise), heavy chest, more fatigue than usual.

    Wondering if anyone else who has dealt with pneumonitis can tell me if these symptoms sound familiar, or maybe it's just the crappy air quality of california that's doing it. Had pneumonia as a baby, not sure if that makes me more susceptible or not. Emailed my onc, should hear back from her tomorrow, but wanted to get some input from you guys.

    Thanks 🙂

Viewing 17 reply threads
  • Replies
      • August 12, 2016 at 10:34 am
      debwray
      Participant

      Hi Jenn,

      I'm on Pembro-  and a cough /breathlessness is something it has been stressed I should report promptly.. I'm sure you are right to talk to your doctors about these symptoms as if it is pneumonitis the earlier you get treatment for this the better.- although it looks like pneumonitis is more common with pembro than Yervoy.

      There is quite a lot of info on the boards about checkpoint inhibitors …which might help but I'm sure someone will chip in soon with a reply based on their experience .

      https://www.melanoma.org/search/mpip/pneumonitis%20ipi

      Looks like they take x rays-or maybe even a ct scan and exclude infection but if it looks like inflammation and breathlessness are present a course of steroids is a possibility…. Just wanted to encourage you to get it assessed sooner rather than later…..crossing my fingers it settles really soon. Best of luck- Deb

       

       

       

      • August 12, 2016 at 10:34 am
      debwray
      Participant

      Hi Jenn,

      I'm on Pembro-  and a cough /breathlessness is something it has been stressed I should report promptly.. I'm sure you are right to talk to your doctors about these symptoms as if it is pneumonitis the earlier you get treatment for this the better.- although it looks like pneumonitis is more common with pembro than Yervoy.

      There is quite a lot of info on the boards about checkpoint inhibitors …which might help but I'm sure someone will chip in soon with a reply based on their experience .

      https://www.melanoma.org/search/mpip/pneumonitis%20ipi

      Looks like they take x rays-or maybe even a ct scan and exclude infection but if it looks like inflammation and breathlessness are present a course of steroids is a possibility…. Just wanted to encourage you to get it assessed sooner rather than later…..crossing my fingers it settles really soon. Best of luck- Deb

       

       

       

      • August 12, 2016 at 10:34 am
      debwray
      Participant

      Hi Jenn,

      I'm on Pembro-  and a cough /breathlessness is something it has been stressed I should report promptly.. I'm sure you are right to talk to your doctors about these symptoms as if it is pneumonitis the earlier you get treatment for this the better.- although it looks like pneumonitis is more common with pembro than Yervoy.

      There is quite a lot of info on the boards about checkpoint inhibitors …which might help but I'm sure someone will chip in soon with a reply based on their experience .

      https://www.melanoma.org/search/mpip/pneumonitis%20ipi

      Looks like they take x rays-or maybe even a ct scan and exclude infection but if it looks like inflammation and breathlessness are present a course of steroids is a possibility…. Just wanted to encourage you to get it assessed sooner rather than later…..crossing my fingers it settles really soon. Best of luck- Deb

       

       

       

      • August 12, 2016 at 11:00 am
      Maria C
      Participant

      Hi Jenn,

      I had pneumonitis when I was on the ipi/nivo combo. The primary symptom for me was heavy breathing, I don't recall a cough or any burning feeling, but I imagine your onc will want to take a look through scans to see what's going on. When they did diagnos me with pneuminitis, I was put on steroids but it took a long time – about 4-6 weeks if I recall – to resolve fully. 

      Good luck on this one & please keep us posted with your results!

       

      • August 12, 2016 at 11:00 am
      Maria C
      Participant

      Hi Jenn,

      I had pneumonitis when I was on the ipi/nivo combo. The primary symptom for me was heavy breathing, I don't recall a cough or any burning feeling, but I imagine your onc will want to take a look through scans to see what's going on. When they did diagnos me with pneuminitis, I was put on steroids but it took a long time – about 4-6 weeks if I recall – to resolve fully. 

      Good luck on this one & please keep us posted with your results!

       

      • August 12, 2016 at 11:00 am
      Maria C
      Participant

      Hi Jenn,

      I had pneumonitis when I was on the ipi/nivo combo. The primary symptom for me was heavy breathing, I don't recall a cough or any burning feeling, but I imagine your onc will want to take a look through scans to see what's going on. When they did diagnos me with pneuminitis, I was put on steroids but it took a long time – about 4-6 weeks if I recall – to resolve fully. 

      Good luck on this one & please keep us posted with your results!

       

      • August 12, 2016 at 4:28 pm
      Casitas1
      Participant

      Hey Jenn, I caught a bad virus two weeks after starting Pembro back in Jan/2016. I have had the cough(productive) part of it ever since! I live in S. Cal. and used an inhaler occasionally. My oncologist just prescribed Advair and seems to be helping a little with the wheezing and drying up the cough. Also crusty eyes and nose(foul smell) Maybe my body trying to get rid of the chemicals? cough always a little better before infusions and worse just after.

      Best, Paul

      • August 12, 2016 at 4:28 pm
      Casitas1
      Participant

      Hey Jenn, I caught a bad virus two weeks after starting Pembro back in Jan/2016. I have had the cough(productive) part of it ever since! I live in S. Cal. and used an inhaler occasionally. My oncologist just prescribed Advair and seems to be helping a little with the wheezing and drying up the cough. Also crusty eyes and nose(foul smell) Maybe my body trying to get rid of the chemicals? cough always a little better before infusions and worse just after.

      Best, Paul

      • August 12, 2016 at 4:28 pm
      Casitas1
      Participant

      Hey Jenn, I caught a bad virus two weeks after starting Pembro back in Jan/2016. I have had the cough(productive) part of it ever since! I live in S. Cal. and used an inhaler occasionally. My oncologist just prescribed Advair and seems to be helping a little with the wheezing and drying up the cough. Also crusty eyes and nose(foul smell) Maybe my body trying to get rid of the chemicals? cough always a little better before infusions and worse just after.

      Best, Paul

      • August 12, 2016 at 6:33 pm
      WithinMySkin
      Participant
      Oh man, I’m sorry to hear this, Jenn! Truly hoping it’s just the beginning of a cold (or something super minor) rather than pneumonitis. We always think the worst, and I’m not wishing a summertime cold on you, but that’s a heck of a lot better than other possibilities!! I’m sure, though, that your onc will be quick to respond and get to the bottom of your symptoms. Hope you can rest up and feel better!!

      Lauren

      • August 12, 2016 at 6:33 pm
      WithinMySkin
      Participant
      Oh man, I’m sorry to hear this, Jenn! Truly hoping it’s just the beginning of a cold (or something super minor) rather than pneumonitis. We always think the worst, and I’m not wishing a summertime cold on you, but that’s a heck of a lot better than other possibilities!! I’m sure, though, that your onc will be quick to respond and get to the bottom of your symptoms. Hope you can rest up and feel better!!

      Lauren

      • August 12, 2016 at 6:33 pm
      WithinMySkin
      Participant
      Oh man, I’m sorry to hear this, Jenn! Truly hoping it’s just the beginning of a cold (or something super minor) rather than pneumonitis. We always think the worst, and I’m not wishing a summertime cold on you, but that’s a heck of a lot better than other possibilities!! I’m sure, though, that your onc will be quick to respond and get to the bottom of your symptoms. Hope you can rest up and feel better!!

      Lauren

      • August 12, 2016 at 7:20 pm
      jennunicorn
      Participant

      Thanks everyone for the replies and input. My onc is scheduling a chest CT to see what's going on. She's also hoping it is not Ipi related and hoping it's just a virus. My next infusion is scheduled for a week from Monday so she definitely wants to get to the bottom of this soon in case I need to stop or delay treatment. Will keep you posted on what happens.

      • August 12, 2016 at 7:20 pm
      jennunicorn
      Participant

      Thanks everyone for the replies and input. My onc is scheduling a chest CT to see what's going on. She's also hoping it is not Ipi related and hoping it's just a virus. My next infusion is scheduled for a week from Monday so she definitely wants to get to the bottom of this soon in case I need to stop or delay treatment. Will keep you posted on what happens.

      • August 12, 2016 at 7:20 pm
      jennunicorn
      Participant

      Thanks everyone for the replies and input. My onc is scheduling a chest CT to see what's going on. She's also hoping it is not Ipi related and hoping it's just a virus. My next infusion is scheduled for a week from Monday so she definitely wants to get to the bottom of this soon in case I need to stop or delay treatment. Will keep you posted on what happens.

        • August 12, 2016 at 9:45 pm
        keepthefaith11
        Participant
        Jenn, thinking of you hoping it is just a cold or virus. Can happen for sure during the summer months. Keep us updated!

        Annie

        • August 12, 2016 at 9:45 pm
        keepthefaith11
        Participant
        Jenn, thinking of you hoping it is just a cold or virus. Can happen for sure during the summer months. Keep us updated!

        Annie

        • August 12, 2016 at 9:45 pm
        keepthefaith11
        Participant
        Jenn, thinking of you hoping it is just a cold or virus. Can happen for sure during the summer months. Keep us updated!

        Annie

        • August 12, 2016 at 10:19 pm
        jennunicorn
        Participant

        Thanks Annie! 

        • August 12, 2016 at 10:19 pm
        jennunicorn
        Participant

        Thanks Annie! 

        • August 12, 2016 at 10:19 pm
        jennunicorn
        Participant

        Thanks Annie! 

      • August 17, 2016 at 4:22 pm
      jennunicorn
      Participant

      CT scan was good. The nodules that were seen on my June scan are still there but have not changed. No sign of pneumonitis. Just a weird chest cold. It is starting to improve, just need to rest and get over this thing.

      Thanks for the support everyone.

      • August 17, 2016 at 4:22 pm
      jennunicorn
      Participant

      CT scan was good. The nodules that were seen on my June scan are still there but have not changed. No sign of pneumonitis. Just a weird chest cold. It is starting to improve, just need to rest and get over this thing.

      Thanks for the support everyone.

      • August 17, 2016 at 4:22 pm
      jennunicorn
      Participant

      CT scan was good. The nodules that were seen on my June scan are still there but have not changed. No sign of pneumonitis. Just a weird chest cold. It is starting to improve, just need to rest and get over this thing.

      Thanks for the support everyone.

        • August 17, 2016 at 7:03 pm
        WithinMySkin
        Participant
        Great news, Jenn! I’m sure that’s a huge relief. Hope you get lots of R&R and feel better soon!
        • August 17, 2016 at 7:03 pm
        WithinMySkin
        Participant
        Great news, Jenn! I’m sure that’s a huge relief. Hope you get lots of R&R and feel better soon!
        • August 17, 2016 at 7:03 pm
        WithinMySkin
        Participant
        Great news, Jenn! I’m sure that’s a huge relief. Hope you get lots of R&R and feel better soon!
        • August 17, 2016 at 7:39 pm
        jennunicorn
        Participant

        Thanks Lauren! Definitely a huge relief!

        • August 17, 2016 at 7:39 pm
        jennunicorn
        Participant

        Thanks Lauren! Definitely a huge relief!

        • August 17, 2016 at 7:39 pm
        jennunicorn
        Participant

        Thanks Lauren! Definitely a huge relief!

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