najma Posted October 20, 2018 Share Posted October 20, 2018 i have been on alectinib for 4 months now and have had pneuminitis 2 times and recovered. my tumor continue to decrease. does anyone know or have experienced this? Link to comment Share on other sites More sharing options...
Steff Posted October 20, 2018 Share Posted October 20, 2018 Najma, My mom is on immunotherapy, so a bit different, but it's not uncommon to have pneumonitis with immunotherapy. My mom has had what was thought to be pneumonitis once and now had pneumonia believed to be caused by immunotherapy. She has had to take treatment breaks in order to receive high dose steroids. Luckily, even with the treatment breaks, her cancer is still stable. From my limited knowledge of alectinib, I believe that pneumonitis isn't all that uncommon either???? Link to comment Share on other sites More sharing options...
najma Posted October 21, 2018 Author Share Posted October 21, 2018 Ok but her oncologist would like to continue immunotherapy even with pneuminitis ? Link to comment Share on other sites More sharing options...
Steff Posted October 22, 2018 Share Posted October 22, 2018 Yes, once it is cleared up. Immunotherapy is working well, so we all have decided to continue treatment. Should the side effects become worse or pneumonitis continually persists, we will then consider another type of treatment. Link to comment Share on other sites More sharing options...
Cheryncp123 Posted January 24, 2019 Share Posted January 24, 2019 Pneumonitis is unfortunately one of the possible side effects of Alecensa. I have been taking the drug for 16 months now and have not had this problem however if you check out the Facebook group Alkpositive.org I am certain you will find others who have and will be glad to answer any questions for you. Link to comment Share on other sites More sharing options...
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