› Forums › General Melanoma Community › Elevated Liver Enzymes/Major Insomnia during Opdivo/Yervoy treatment
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Holli.
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- July 12, 2016 at 3:40 am
My brother-in-law is currently undergoing treatment for stage IV melanoma under the Opdivo/Yervoy regimen. After his 3rd treatment, he began to develop severe side effects (severe fatigue, shortness of breath, severe insomnia). His liver enzymes have elevated to ALT/GPT=1246 and AST/GOT=670. He has had severe insomnia for over one week accompanied by hallucinations at night. His doctor has stated that his ability to take steroids is limited due to complications from diabetes. Due to a severe lack of sleep, he is at the end of his rope mentally and physically. Sleep aids such as Ativan and Ambien have not helped. The doctors are discussing possibly putting him in a medically induced coma to allow him to rest. He is completely miserable. We are desperate for any suggestions that may help with these side effects. Here are my questions:
1) Have any of you experienced liver enzymes elevated to this extreme? If so, did they improve? Was there permanent liver damage?
2) Does anyone have any suggestions to address the insomnia?
His melanoma, which had exploded prior to treatment has completely disappeared, so his big hurdle at this point is trying to get through these side effects. Any advice would be greatly appreciated.
Terry R.
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- July 12, 2016 at 5:02 pm
I participated in the BMS combo trial (ipi + nivolumab) and had a spike in my liver enzymes after the 4th dose. For me, other side effects were limited to a significant rash and extreme fatigue. The rash was treated with topical steroids and the hepatitis with a dose of IV steroids, then 6 weeks of oral steroids (prednisone) which were tapered as my enzymes came down. The elevated enzymes made me ineligible to continue on the trial, so I never got to the nivolumab-only infusion stage. However, my tumors (head, neck, lungs, spine & legs) responded quickly and completely, and I remain NED over 2 years later. I have had no residual issues with my liver.
I'm afraid I can't help you much with the sleep deprivation issue – my problem was trying to stay awake!
Best of luck…
DVD
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- November 17, 2016 at 5:25 pm
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.
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- November 17, 2016 at 5:25 pm
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.
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- November 17, 2016 at 5:25 pm
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.
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- July 12, 2016 at 5:02 pm
I participated in the BMS combo trial (ipi + nivolumab) and had a spike in my liver enzymes after the 4th dose. For me, other side effects were limited to a significant rash and extreme fatigue. The rash was treated with topical steroids and the hepatitis with a dose of IV steroids, then 6 weeks of oral steroids (prednisone) which were tapered as my enzymes came down. The elevated enzymes made me ineligible to continue on the trial, so I never got to the nivolumab-only infusion stage. However, my tumors (head, neck, lungs, spine & legs) responded quickly and completely, and I remain NED over 2 years later. I have had no residual issues with my liver.
I'm afraid I can't help you much with the sleep deprivation issue – my problem was trying to stay awake!
Best of luck…
DVD
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- July 12, 2016 at 5:02 pm
I participated in the BMS combo trial (ipi + nivolumab) and had a spike in my liver enzymes after the 4th dose. For me, other side effects were limited to a significant rash and extreme fatigue. The rash was treated with topical steroids and the hepatitis with a dose of IV steroids, then 6 weeks of oral steroids (prednisone) which were tapered as my enzymes came down. The elevated enzymes made me ineligible to continue on the trial, so I never got to the nivolumab-only infusion stage. However, my tumors (head, neck, lungs, spine & legs) responded quickly and completely, and I remain NED over 2 years later. I have had no residual issues with my liver.
I'm afraid I can't help you much with the sleep deprivation issue – my problem was trying to stay awake!
Best of luck…
DVD
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