Holli

I started the trial 2 days ago (9/30/15). I was profoundly tired the first day, but chalked it up to a very long day and the anxiety of the unknown. I still feel constantly like I'd just love to curl up somewhere and take a nap. The evening of the infusion I had an emergency run to the bathroom with very loose stools, but no problem since on that front. I had an autoimmune skin disorder, granuloma annularae (GA) that was what I was being treated for when the melanoma was discovered that had been dormant for about 3 months after treatment. It lit right up and seems as active as ever now. I've had generalized itching, but nothing unbearable. This morning I woke up with a very sore throat. I haven't seen that on any of the possible side effects lists, so it's interesting that you are experiencing that too. Since it's been a few months since you posted, can you give us an update on the sore throat issue?

I started the trial 2 days ago (9/30/15). I was profoundly tired the first day, but chalked it up to a very long day and the anxiety of the unknown. I still feel constantly like I'd just love to curl up somewhere and take a nap. The evening of the infusion I had an emergency run to the bathroom with very loose stools, but no problem since on that front. I had an autoimmune skin disorder, granuloma annularae (GA) that was what I was being treated for when the melanoma was discovered that had been dormant for about 3 months after treatment. It lit right up and seems as active as ever now. I've had generalized itching, but nothing unbearable. This morning I woke up with a very sore throat. I haven't seen that on any of the possible side effects lists, so it's interesting that you are experiencing that too. Since it's been a few months since you posted, can you give us an update on the sore throat issue?

I started the trial 2 days ago (9/30/15). I was profoundly tired the first day, but chalked it up to a very long day and the anxiety of the unknown. I still feel constantly like I'd just love to curl up somewhere and take a nap. The evening of the infusion I had an emergency run to the bathroom with very loose stools, but no problem since on that front. I had an autoimmune skin disorder, granuloma annularae (GA) that was what I was being treated for when the melanoma was discovered that had been dormant for about 3 months after treatment. It lit right up and seems as active as ever now. I've had generalized itching, but nothing unbearable. This morning I woke up with a very sore throat. I haven't seen that on any of the possible side effects lists, so it's interesting that you are experiencing that too. Since it's been a few months since you posted, can you give us an update on the sore throat issue?

Hi, I have been on that trial since Sept 2015. I got an exacerbation of a previous skin condition (granuloma annularae) and increased itchiness after each infusion (Nivo, really). In January I started having severe abdominal cramping and lost 15 pounds by mid February. I had every work up imaginable with nothing coming up as a cause. During that time I was extremely tired. In May my liver enzymes spiked to the mid 100s (ALT ~160/AST ~130). I was put on 60 mg of Prednisone and the study was paused. The steroids brought back my appetite and relieved the fatigue but raised my glucose levels. I had to go back up on the taper twice as the enzymes rebounded when the dose decreased. Finally, in August I got off the steroids and we decided not to restart the trial. Yesterday was my 3 month check up with scans. Scans are NED, but my liver enzymes are through the roof. ALT 420/AST 380 ALKP and bilirubin also elevated. I have been having fatigue, lack of appetite, weight loss, and abdominal pain for a few weeks leading up to this, which I attributed to my shock and dispair over the election. Now I'm on 80 mg of Prednisone. Blech. My last infusion was in May, it is now November.

Hi, I have been on that trial since Sept 2015. I got an exacerbation of a previous skin condition (granuloma annularae) and increased itchiness after each infusion (Nivo, really). In January I started having severe abdominal cramping and lost 15 pounds by mid February. I had every work up imaginable with nothing coming up as a cause. During that time I was extremely tired. In May my liver enzymes spiked to the mid 100s (ALT ~160/AST ~130). I was put on 60 mg of Prednisone and the study was paused. The steroids brought back my appetite and relieved the fatigue but raised my glucose levels. I had to go back up on the taper twice as the enzymes rebounded when the dose decreased. Finally, in August I got off the steroids and we decided not to restart the trial. Yesterday was my 3 month check up with scans. Scans are NED, but my liver enzymes are through the roof. ALT 420/AST 380 ALKP and bilirubin also elevated. I have been having fatigue, lack of appetite, weight loss, and abdominal pain for a few weeks leading up to this, which I attributed to my shock and dispair over the election. Now I'm on 80 mg of Prednisone. Blech. My last infusion was in May, it is now November.

Hi, I have been on that trial since Sept 2015. I got an exacerbation of a previous skin condition (granuloma annularae) and increased itchiness after each infusion (Nivo, really). In January I started having severe abdominal cramping and lost 15 pounds by mid February. I had every work up imaginable with nothing coming up as a cause. During that time I was extremely tired. In May my liver enzymes spiked to the mid 100s (ALT ~160/AST ~130). I was put on 60 mg of Prednisone and the study was paused. The steroids brought back my appetite and relieved the fatigue but raised my glucose levels. I had to go back up on the taper twice as the enzymes rebounded when the dose decreased. Finally, in August I got off the steroids and we decided not to restart the trial. Yesterday was my 3 month check up with scans. Scans are NED, but my liver enzymes are through the roof. ALT 420/AST 380 ALKP and bilirubin also elevated. I have been having fatigue, lack of appetite, weight loss, and abdominal pain for a few weeks leading up to this, which I attributed to my shock and dispair over the election. Now I'm on 80 mg of Prednisone. Blech. My last infusion was in May, it is now November.