2 years after Optivo – cancer free – continue treatment or stop

I just finished listening in on an immunotherapy webinar 20 minutes ago. There are still no solid answers to "when can we stop". It's a really personal choice. How long have you been stable or NED? Have you had any side effects from the treatment? If it has been successful, and you show a recurrence, there has been no medical reasoning shown for people not to go back onto the drug. 

I was on Keytruda for 20 months. Some pancreatitis kicked in, and inflammatory arthritis started to really jack me up. Since my body CT's had been coming up NED for at least 18 months, and my brain had only gamma radiation related scar tissue in sight…. the docs and I decided to "take a break" from infusions. That was July 2016. I'm still "on break", because my scans are still coming back clear. It was a terrifying "leap" to think about stopping a drug that had worked so well. I still get nervous come scan times, but that is decreasing a little the further out we get. Of course every single time I have a headache, gas, itchy spot, etc… the "What if it's…." runs through my mind. But overall, I have to say, not driving down for infusions every 3 weeks has been soooooo nice! I do somehow feel a little less like a "cancer patient". 

Perhaps ask your doc how he/she feels about the possibility of going back on, should something new show up. Think of it as a break. Stopping just sounds so much more harsh and terrifying.  

Stopping treatment is tricky….literally and psychologically.  However, most melanoma experts feel that one need not take immunotherapy forever…and somewhere around 2 years is more than sufficient…with the thought that only a "certain amount" will do a patient good and "more than that" only increases the risk of side effects.  I was in a 2 1/2 year nivo trial from 2010 to June of 2013.  We all had to stop treatment at that point whether we wanted to or not because that was how the trial was set up.  I have had no treatment since and remain NED.  I and all of my fellow ratties were Stage IV peeps. I had experienced brain and lung mets.  Many of us continue to do very well.   I wish you my best.  Celeste

I started ipi-nivo in Jan 2016.  I stopped nivo infusions in 2017 (none since May) due to side effects, primarily arthritis.  I had my most recent scans last week.  So far, so good.  I'm not NED, but have been stable since starting ipi-nivo.