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Nivolumab – Granuloma and Interstitial septal thickening of the lungs

Forums General Melanoma Community Nivolumab – Granuloma and Interstitial septal thickening of the lungs

  • Post
    Zelda_Scotland
    Participant
      Has anyone on Nivolumab ended up with lung issues caused by the treatment? I am 12 treatments in out of 26 and the programme has just been paused while they investigate my lungs. A CT scan and follow-up EBUS showed granuloma in my lungs since the end of April but now I have chest pain and the latest round of test show Interstitial septal thickening. I am worried on two fronts; first, the lungs won’t recover and may even get worse, second that they don’t resume the Nivolumab. Has anyone on Nivo experienced lung side effects?
      Thanks
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    • Replies
        Tracyyy
        Participant
          Hi Zelda, my mother is on a similar drug – spartalizumab in a trial + Dab/Tram and around her 8 treatment she got pneumonitis which cleared up with steroids. When she stopped taking the steroids she got cough, chest pain and shortness of breath and they discovered bilateral enlarged lymph nodes in her chest. Since November they were bigger and smaller on each scan, now they have almost disappeared, they also found granuloma on her lungs. Oncologist thinks it might be side effect from immunotherapy or sarcoidosis. As immunotherapy drugs can cause inflammation to various organs, I think lung problems are pretty common. Good luck and please keep us posted!
          Bubbles
          Participant
            Unfortunately immunotherapy (including Nivo) can cause a lot of weird and unfortunate side effects! Sorry you are dealing with them! As the prior responder noted, most folks improve rapidly with a break in the offending drug and treatment with steroids. Most of the side effects resolve completely (though those whose hormone secreting glands like the thyroid are affected do have to take replacement hormone supplements for life) and often immunotherapy can be resumed with close observation. Pneumonitis and other lung issues are common. Here are a lot of specific reports (though other side effects are also discussed in some of them): https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=pneumonitis Here is an excellent algorithm that outlines treatment of specific categories of side effects for oncologists: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/07/excellent-pdf-on-how-to-deal-with.html

            Hope that helps and you are feeling better soon!!! celeste

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