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- January 4, 2017 at 6:23 am
I experienced some of the same side effects immediately after my second ipi/nivo infusion (and my third overall infusion, since I had started with a single dose of nivo). For about a month, I was running a pretty high fever, around 101-02, that we kept in check with a steady stream of ibuprofen and tylenol. Also, I was extremely fatigued throughout the month, had constant chills and headaches, had very little appetite, and mostly kept to my bed or couch.
Prior to getting my third combo infusion, my bloodwork showed elevated liver enzymes (about 5x ULN). My doctor decided to postpone any further treatment and instead started me on a pretty heavy daily steroid regimen. I felt better almost instaneously and these side effects quickly subsided (although others lingered for quite a while longer).
I think the thinking is that, in my case, all of the side effects, including the fevers and hepatoxicity, were immunotherapy-related. Fortunately, while going into overdrive, my immune system seemed to have destroyed a lot of cancer, too.
By the way, I was treated at UCSF. As I'm sure you have, I received very attentive and responsive care from the physicians and staff both during and outside of working hours. So don't hesitate to get in touch at any time because, at the very least, there will be an oncologist on call to handle side effect concerns.
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- January 4, 2017 at 6:23 am
I experienced some of the same side effects immediately after my second ipi/nivo infusion (and my third overall infusion, since I had started with a single dose of nivo). For about a month, I was running a pretty high fever, around 101-02, that we kept in check with a steady stream of ibuprofen and tylenol. Also, I was extremely fatigued throughout the month, had constant chills and headaches, had very little appetite, and mostly kept to my bed or couch.
Prior to getting my third combo infusion, my bloodwork showed elevated liver enzymes (about 5x ULN). My doctor decided to postpone any further treatment and instead started me on a pretty heavy daily steroid regimen. I felt better almost instaneously and these side effects quickly subsided (although others lingered for quite a while longer).
I think the thinking is that, in my case, all of the side effects, including the fevers and hepatoxicity, were immunotherapy-related. Fortunately, while going into overdrive, my immune system seemed to have destroyed a lot of cancer, too.
By the way, I was treated at UCSF. As I'm sure you have, I received very attentive and responsive care from the physicians and staff both during and outside of working hours. So don't hesitate to get in touch at any time because, at the very least, there will be an oncologist on call to handle side effect concerns.
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- January 4, 2017 at 6:23 am
I experienced some of the same side effects immediately after my second ipi/nivo infusion (and my third overall infusion, since I had started with a single dose of nivo). For about a month, I was running a pretty high fever, around 101-02, that we kept in check with a steady stream of ibuprofen and tylenol. Also, I was extremely fatigued throughout the month, had constant chills and headaches, had very little appetite, and mostly kept to my bed or couch.
Prior to getting my third combo infusion, my bloodwork showed elevated liver enzymes (about 5x ULN). My doctor decided to postpone any further treatment and instead started me on a pretty heavy daily steroid regimen. I felt better almost instaneously and these side effects quickly subsided (although others lingered for quite a while longer).
I think the thinking is that, in my case, all of the side effects, including the fevers and hepatoxicity, were immunotherapy-related. Fortunately, while going into overdrive, my immune system seemed to have destroyed a lot of cancer, too.
By the way, I was treated at UCSF. As I'm sure you have, I received very attentive and responsive care from the physicians and staff both during and outside of working hours. So don't hesitate to get in touch at any time because, at the very least, there will be an oncologist on call to handle side effect concerns.
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- October 10, 2016 at 8:42 pm
Thanks for the post, Lauren. I looked through your blog and I think we had some similar treatment side effects, and during the same time. I received my second Ipi-Nivo combo infusion at the end of March and had elevated liver enzymes by April (about 5-6x normal). Never received the third combo infusion and was told that Ipi was "off the table" on account of the adverse reaction. I was on prednisone for about 4 months and had a lot of difficulty tapering down to 0. Will definitely speak with an endocrine specialist to go over what happened and what I can expect going forward. Hope you're doing well.
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- October 10, 2016 at 8:42 pm
Thanks for the post, Lauren. I looked through your blog and I think we had some similar treatment side effects, and during the same time. I received my second Ipi-Nivo combo infusion at the end of March and had elevated liver enzymes by April (about 5-6x normal). Never received the third combo infusion and was told that Ipi was "off the table" on account of the adverse reaction. I was on prednisone for about 4 months and had a lot of difficulty tapering down to 0. Will definitely speak with an endocrine specialist to go over what happened and what I can expect going forward. Hope you're doing well.
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- October 10, 2016 at 8:42 pm
Thanks for the post, Lauren. I looked through your blog and I think we had some similar treatment side effects, and during the same time. I received my second Ipi-Nivo combo infusion at the end of March and had elevated liver enzymes by April (about 5-6x normal). Never received the third combo infusion and was told that Ipi was "off the table" on account of the adverse reaction. I was on prednisone for about 4 months and had a lot of difficulty tapering down to 0. Will definitely speak with an endocrine specialist to go over what happened and what I can expect going forward. Hope you're doing well.
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- October 10, 2016 at 8:24 pm
Thanks for your response, Deb. I'm planning on setting up an appointment with an endocrinologist. I had a pretty rough go during the taper, including some other side effects listed in the paper you shared: headaches, hypotension, acne, mood changes. Prednisone is a hell of a drug. Now that I'm completely off the prednisone, my oncologist and I were hoping that my fatigue and cortisol levels would resolve on their own. But since that hasn't happened yet, I'm going to have this conversation with an endocrine specialist. Best wishes to you as well.
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- October 10, 2016 at 8:24 pm
Thanks for your response, Deb. I'm planning on setting up an appointment with an endocrinologist. I had a pretty rough go during the taper, including some other side effects listed in the paper you shared: headaches, hypotension, acne, mood changes. Prednisone is a hell of a drug. Now that I'm completely off the prednisone, my oncologist and I were hoping that my fatigue and cortisol levels would resolve on their own. But since that hasn't happened yet, I'm going to have this conversation with an endocrine specialist. Best wishes to you as well.
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- October 10, 2016 at 8:24 pm
Thanks for your response, Deb. I'm planning on setting up an appointment with an endocrinologist. I had a pretty rough go during the taper, including some other side effects listed in the paper you shared: headaches, hypotension, acne, mood changes. Prednisone is a hell of a drug. Now that I'm completely off the prednisone, my oncologist and I were hoping that my fatigue and cortisol levels would resolve on their own. But since that hasn't happened yet, I'm going to have this conversation with an endocrine specialist. Best wishes to you as well.
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- October 10, 2016 at 8:18 pm
Thanks, Ed. I'll check out those videos. My oncologist has had to do double and triple duty as liver doctor and now endocrinologist. Given that the immunotherapy drugs can cause such a wide range of autoimmune issues, I think that's all too common. Best wishes to you as well.
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- October 10, 2016 at 8:18 pm
Thanks, Ed. I'll check out those videos. My oncologist has had to do double and triple duty as liver doctor and now endocrinologist. Given that the immunotherapy drugs can cause such a wide range of autoimmune issues, I think that's all too common. Best wishes to you as well.
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- October 10, 2016 at 8:18 pm
Thanks, Ed. I'll check out those videos. My oncologist has had to do double and triple duty as liver doctor and now endocrinologist. Given that the immunotherapy drugs can cause such a wide range of autoimmune issues, I think that's all too common. Best wishes to you as well.
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