The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

chalroad5

Forum Replies Created

Viewing 2 reply threads
  • Replies
      chalroad5
      Participant

        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.

        chalroad5
        Participant

          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.

          chalroad5
          Participant

            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.

            chalroad5
            Participant

              I'll "third" UCSF, they have an excellent melanoma program. I see Dr. Daud and think he's fantastic.

              chalroad5
              Participant

                I'll "third" UCSF, they have an excellent melanoma program. I see Dr. Daud and think he's fantastic.

                chalroad5
                Participant

                  I'll "third" UCSF, they have an excellent melanoma program. I see Dr. Daud and think he's fantastic.

                  chalroad5
                  Participant

                    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.

                    chalroad5
                    Participant

                      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.

                      chalroad5
                      Participant

                        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.

                        chalroad5
                        Participant

                          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.

                          chalroad5
                          Participant

                            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.

                            chalroad5
                            Participant

                              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.

                              chalroad5
                              Participant

                                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.

                                chalroad5
                                Participant

                                  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.

                                  chalroad5
                                  Participant

                                    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.

                                Viewing 2 reply threads
                                About the MRF Patient Forum

                                The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                Popular Topics