After reading several of your stories and looking at all the information out there, I realize I am one of the lucky ones to have qualified for the pd1 MK-3475 trial. It appears too, from what I am reading, that even the dosage I am getting (the highest dosage) seems to be the dosage with the better results.
But part of the trial I am in, is that they are trying to figure out how much of the drug is needed for the best results. Which brings me to my biggest question: How much is too much?
I originally was signed up for two years. Then a year into treatment, they changed it and had me sign new forms saying "no end date." Saying that I could be on it for the rest of my life.
I am having a great response so far and am so thankful for that. But I am struggling with how long I should actually stay on the drug. And I am struggling with the fact that if I bow-out and come off of it, they will not offer it to me again.
Ideally, I'd like to do my original two-years and then come off of it and see how things go.
Has anyone out there been on it for a long time, come off it, and is still doing great?