NED from stage 4 lung cancer with keytruda

fluffycat9 Member Posts: 1



     Greetings everyone.  Newbie here.  I was diagnosed NSCLC in December 2017 when a lung mass was discovered on a PET scan which was done for a workup of a GYN malignancy.  I had no symptoms.  A mass of 1.5 by 2 cm in my R lung with hilar and mediatinal nodes, a supraclvicular node, and gastrohepatic nodes.  It was adenocarcinoma with no mutations but 100%PD-L1.  The gastrohepatic nodes turned out to be neuroendocrine tissue but they still staged me as IV. 


     Onward.  Got the port. MRI of brain negative.  Three cycles of Carbo/Alimta/Keytruda.  Did OK until after the third treatment when I developed Dermatomyositis.  This is a rare paraneoplastic syndrome which can come from the underlying malignancy but in my case was felt to be an autoimmune side effect of the Keytruda.  Everything was stopped and I was hospitalized a couple of times.  Got high dose IV steroids, mycophenolate, and IV gammaglobulin to reverse the effects of the Keytruda.  Several months of rehab later I got better.  Still have some muscle issues from the myopathy but much better.


     Anyway. My last 3 cat scans have been NED except for a mass which has been stable and they believe is pseudotumor.  My second opinion oncologist (NCI cancer center) also feels the same and does not see the need for any furthur treatment at this time either.  


     Don't really have any questions but was wondering if anyone else has seen an overwhelming respone to immunotherapy and then gotten to NED.  My oncologist is optimistic that I may have a prolonged response.  My GYN cancer for which I had surgery also seems to be NED.  I guess I am skeptical... but grateful none the less.


     Nil desperandum.




  • dennycee
    dennycee Member Posts: 842

    I have no personal experience with Keytruda but followed it through from early clinical trials.  I learned about it on these boards from some of the people who were in those early trials. Thanks for sharing hope.