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Opdivo and diabetes
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Opdivo and diabetes

› Forums › General Melanoma Community › Opdivo and diabetes

  • Post
    • February 28, 2019 at 9:59 pm
    RichInLife2
    Participant

      So it seems that I am among the 0.9% of people who have contracted Type 1 Diabetes Mellitus after receiving Opdivo monotherapy.* My doctors, both my endocrinologist and the two oncologists I have seen are all  at a loss when it comes to helping me manage it. They all tell me that immunotherapy-mediated T1D is even harder to manage than regular old T1D, but beyond that there's just shrugging of shoulders. My oncologists refer my questions to my endocrinologist, but my endocrinologist says she only knows of one other patient who has gotten diabetes as a result of immunotherapy. It's a new area for a lot of people, me included.

      Needless to say, I am very frustrated, so I am reaching out to anyone else on this forum who might have also been in that 0.9%. How are you managing it? Do you feel like you have it under control? Have your doctor's been helpful? Please respond here or message me. Mostly, I'm looking to see that I'm not alone, and also that I'm not crazy.

      Thanks,

      -Rich

      * http://www.opdivohcp.com/servlet/servlet.FileDownload?file=00Pi000000onjAXEAY

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    • Replies
        • February 28, 2019 at 11:24 pm
        Bubbles
        Participant

          Unfortunately, you are not alone.  Endocrine side effects….affecting the thyroid, adrenal glands, pancreas, and pituitary, etc….are unfortunately known risks of all immunotherapy (ipilimumab/yervoy, nivolumab/opdivo, and pembrolizumab/keytruda).  There are quite a few on this board who have been dealing with all of the above, including diabetes.  I am sure they will reach out to you.  Here are a few reports that might interest you:  

          http://diabetes.diabetesjournals.org/content/diabetes/early/2018/06/20/dbi18-0002.full.pdf  

          https://www.sciencemag.org/news/2017/11/powerful-new-cancer-drugs-are-saving-lives-can-also-ignite-diabetes-or-other-autoimmune  

          https://www.researchgate.net/publication/326604261_Expert_opinion_on_immunotherapy_induced_diabetes  

          I could give you lots more if you are interested.  But, clearly…you can see that you are neither crazy nor alone.  I am sorry you are having to deal with this additional insult.  However, your endocrinologist should be able to help you mange your condition.

          Hang in there.  I'm sure others with more personal experience will respond.  I wish you my best.  Celeste

            • March 1, 2019 at 12:00 am
            Lucas
            Participant

              I developed type 1 diabetes after 5 infusions of keytruda. While it was a shock at first to be dependent on insulin. It is no harder to manage because it’s immunotherapy induced. I’d much rather live without it however  advancements in diabetes have made it much easier to manage. At this point it just feels normal along with my other manageable endocrine issues. I rarely see my endo because I have it under control and my A1C is always good! It gets much easier in the following months, I’ve had it for two years. 

              • March 1, 2019 at 2:41 pm
              RichInLife2
              Participant

                Hi Lucas. Thanks for the reply. I've had diabetes since 11/5/2018. How long did it take you before you felt you had your diabetes well-managed?

                -Rich

                • March 1, 2019 at 6:31 pm
                Lucas
                Participant

                  Diabetes will always be up and down. I still have very high numbers at times, but the idea is to not stay high or low. If you monitor closely and correct you will be ok, especially with a CGM. It was hard in the first couple months of diagnosis to learn the process and accept. Also my doctors didn’t have any info on immunotherapy induced diabetes. They all thought it was likely reversible. 

                  • March 1, 2019 at 2:39 pm
                  RichInLife2
                  Participant

                    Thanks, Celeste. I've read about the connection between diabetes and anti-pd1 immunotherapy. Glad to know I'm not crazy or alone and also glad to hear that other folks are managing better than I am. That gives me hope, anyway. It's just that I'm frustrated with the apparent buck-passing of my various doctors and feel like I'm left to figure this stuff out on my own. I guess I just need to have a little more patience.

                     

                  • March 1, 2019 at 2:20 am
                  kst
                  Participant

                    I developed mine after 10 doses of Nivo along with other AE's starting March 2018.  It was impossible to control while on high dose steroids.  After switching from steroids to Infliximab and then Actemra I was able to get it under control.  I am currently using Lantus and Novolog along with Janumet and it seems to be regulated as long as I eat accordingly.  I have to adjust dosage ahead of meals to avoid blood sugar spikes based on what I intend to eat.  Be consistent checking blood sugar before eating and after and you will get used to adjusting dosage.

                    Susanne

                      • March 1, 2019 at 2:45 pm
                      RichInLife2
                      Participant

                        Hi Susan, thanks for the reply. I have a CGM (continuous glucose monitor) so I'm able to check my blood sugar constantly, getting almost real-time numbers as well as trends. The tricky part is dosing as my carb-to-insulin ration seems to vary widely. I'm not on steroids or any other medication other than Nivo. I'm curious about the Janumet, though. I thought that was just for type 2 diabetes and not for someone who is already insulin-dependent.

                        -Rich

                        • March 1, 2019 at 2:47 pm
                        RichInLife2
                        Participant

                          I really meant to type "Hi Susanne." I really wish this board had an edit (or even delete) function!

                           

                          • March 2, 2019 at 12:12 am
                          kst
                          Participant

                            Not sure they are ready to peg my type one way or another because my pancreas is producing a small amount of insulin.  Listed on chart as diabetes mellitus without complication, unspecified type, uncontrolled, long term use of insulin.

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