So new to this site and I have been jumping around looking for people who have used Keytruda and I am seeing a few people who have recently started in trials or hoping to get into one. I am just curious if anyone has results back? Also, regarding the trials.....just curious if we just have awesome insurance but our policy covers this drug for off label use...no need to be part of a trial. We had traveled to NYC and saw a doc at Sloan and he just about fell out of his chair when he found out we had approved use off label as he was going to present their upcoming trial. Is the off-label use and coverage by insurance a rare thing? Thinking it must be. Any info/feedback appreciated:)


The off-label use and coverage by insurance sounds like a miracle to me...


My fiancé was in this trial at u of m in Ann Arbor , mi. All of his tumors grew and he got new ones. Doc said Keytruda is not working for people with synovial sarcoma or Ewing’s. We stopped the trial after 3 infusions due to the growth.


Had the same response although since used off-label, schedule was prob different than trial. He had more growth after two cycles so then tried dacarbazine. Two cycles of the then more growth. He never was able to rebound from chemo and cancer worked its way further into abdominal region. Ended up with DVT, was on blood thinner. Then got an upper GI bleed. He passed away at end of July. It all ended way too quickly. I hate this disease. You hear about the last “good days”. I could feel it in my gut when that was…end of May. He and I along with our kids had two months left after that. Not enough time. Although he lasted more than so many considering he was misdiagnosed (he fought hard for over six years)this disease is horrible. I am grateful he did not have to die in the hospital and we were all with him. One of the most precious moments of my life. Good luck to all.


Thanks Firefly for sharing. May you husband rest in peace. May you find the strength to keep living life to its fullest. Life is so fragile :-(