How much Immunotherapy is Enough?

I, too, did 3 rounds of the ipi/nivo combo and have now been on nivo for over a year. I had positive initial response in which 2 tumors (melanoma) in my breast and sternum both completely disappeared. But then, a few months later, a new tumor appeared near one of my original sites. My oncologist has me on nivo until the end of this year – for a total of 2 years. She says the protocol used to be 3 years and now it is 2 years. I will continue because the fact that 2 tumors disappeared – but then a new one just popped up makes me scared it could happen again. 

Excellent news Mark! 3 infusions of Ipi/Nivo is not a lot, in the states it is approved at 4 infusions of the combo of both drugs as the main part of the treatment, then it goes to Nivo alone infusions for a while. I just had this convo with my oncologist after my good scan (did 4 combos and have done 3 Nivo alone), and she will keep me on Nivo infusions for another year, as long as I continue to do well on it of course. I definitely would start Nivo infusions if I were you, since you're not NED yet, you still want to keep the drugs going so they can keep doing their good work. Once you are NED, then you can have the conversation with your onc about how long they'd want to keep you on Nivo after no more disease is seen.

Hopefully there will be better answers to this question at ASCO this year (early June). Trial patients here in the states have typically been kept on these drugs (Keytruda as well) for 2 to 3 years, barring any need to stop due to grade 3 or 4 adverse events. With more and more of the "general stage IV melanoma population" being treated with immunotherapy, we are seeing more of the undesireable side effects that can occur with long term use. That has prompted doctors to reevaluate just how long patients might need to be kept on the drugs… as a general rule. Everyone is different in tumor load, their immune system response, their overall physical health… etc. There is chatter floating around amongst the "big brains" that remaining a little conservative, yet attempting to avoid some of the more detrimental side effects.. perhaps a good time to discuss stopping infusions is 6 months post stability and/or NED. It's an attempt toward ensuring that any potentially active microscopic disease is wiped out, before leaving the immune system to fend for itself (in it's now trained active state). A recurrance could always prompt starting infusions again……. Although I'm not sure how that would work if you are in a trial. That door may close if you opt to go off the meds. 

I went through all four rounds of Ipi, prior to Keytruda's FDA approved availability. It killed my thyroid, but otherwise did very little in terms of side effects or stoppage of tumor spread. Keytruda worked well for me. I was on it beginning early Nov 2014 until early July 2016. We were shooting for the standard "18-24 months", as the stopping point was/is still rather randomly up in the air. I made it 20 months before the onset of inflammatory arthritis and pancreatitis pushed me to stop. 8 months off of infusions now, and things are still looking good!

5.7 cm down to 3.2 is a great response! Cheers to your little immune soldiers for kickin' a**! It takes a little time, but it sounds as if your body is on the right path toward clearing that crap out completely. 

For what it is worth, I had 50 weeks 24 rounds of high dose NIVO with minimum side effects. NED and been off since Sept 2016. Scans every 12 weeks to follow. I am happy I did it.

Tom