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Terrified

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  • Post
    • June 12, 2021 at 1:54 am
    Rosiepup
    Participant
      This has been a hideously scary week for me and my family. I became severely unwell last week with diabetic ketoasidosis and an emergency admission to to the hospital HDU. My Pancreas is basically shot to pieces and whether this is permanent or not, time will tell! Its thought to be a side effect of previous ipilimumab, Temozolomide, steroids, or as I think, a combination of all!

      I’m still in hospital and slowly recovering but I’m terrified there will be an issue with further treatments. As I updated recently, I am also now suffering from Leptomeninges involvement, which has been devastating. My only option now is enco/bini.

      My question is, what side effects those on enco/bini have most commonly experienced? I’m desperate to get started on it 🥺🥺 I

      is all hope gone for me?🥺😒 Any hope, however vague greatly appreciated.

      Fiona, Scotland

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    • Replies
        • June 13, 2021 at 6:03 am
        MelWave
        Participant
          Hi Fiona,

          I don’t know anything about enco/bini from personal experience but I just googled it and leptomeningeal disease and it seems like there were very encouraging responses in patients.
          For example look at these articles:

          https://pubmed.ncbi.nlm.nih.gov/31757377/

          https://link.springer.com/article/10.1007/s11910-020-01039-1

          I wish you best of luck – hope this works!

          • June 13, 2021 at 7:23 am
          Bubbles
          Participant
            So sorry that you have been so unwell.  It is hard to feel hopeful when one is feeling very bad!  I have to agree with your docs.  Ipi is often the bad boy of immunotherapy side effects though all of the immunotherapy drugs can cause damage to the endocrine system that can lead to diabetes and thyroid disfunction.  I hope your docs get your blood sugars and diabetic issues sorted soon.

            As far the most common side effects of encorafenib and binimetinib – they are consistent with those expected from other forms of BRAF/MEK inhibitors used in melanoma and include – joint pain, fever, rashes, sun sensitivity, some eye problems, and occasionally hair loss.  We learned some years ago – oddly enough – that with targeted therapy there is better effect and FEWER side effects when a BRAF inhibitor is combined with a MEK inhibitor than when either is given as a single agent.  Endocrine issues are not commonly part of the side effect profile of these drugs so I don’t think you should face any obstacle with that.

            Hope you are already feeling better.  c

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