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Immunotherapy and Steroids…Need Input
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Immunotherapy and Steroids…Need Input

› Forums › General Melanoma Community › Immunotherapy and Steroids…Need Input

  • Post
    • May 26, 2017 at 7:10 pm
    RitysMom
    Participant

      I thought I had read somewhere that you could start immunotherapy when on steroids in some situations. Is this true? Can anyone point me in the direction of articles, studies, etc.? My daughter just finished two weeks of WBRT on Wednesday. They tried tapering her quickly off the steroids so she could begin immunotherapy by 5/31. She ended up having a seizure and falling, so they went back to original dose. Now, they're tapering slowly over a month and she won't be able to start immunotherapy until June 28th! I'm so afraid that the tumors in her body can come back/grow during that time. Am I being unreasonable to think they could taper her a little more quickly, so she could begin treatment earlier?

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        • May 26, 2017 at 10:12 pm
        Ridingaroundwith27Jennifers
        Participant

          I had to taper off steriods slowly.  It took about two and a half months.  Maybe the important thing here is to keep your daughter safe and to get her off the steriods safely.  Then she can start the immunotherapy and it can attack the tumors.  Nothing seems to go quickly enough for me and I always find waiting the hardest part as I just want this to be over so I can get back to normal.  Wishing you and your daughter good thoughts.

          Jennifer

          • May 27, 2017 at 11:48 am
          raun cesar
          Participant

            I can understand your concern as a mother and the waiting is frustating.  Slow tamper is always better, the prime concern is her safety. Only then immunotherapy can begun. May she recover soon…

            • May 27, 2017 at 4:21 pm
            jennunicorn
            Participant

              http://www.uptodate.com/contents/toxicities-associated-with-checkpoint-inhibitor-immunotherapy#H91786710

              In this article it says "The need for immunosuppressive therapy to manage irAEs does not appear to affect the response to checkpoint inhibition with either anti-PD-1 antibodies or ipilimumab."

              It is saying if someone is on treatment and they get a side effect that needs to be treated by steroids it will NOT interfere with the affectiveness of the treatment. I don't think she needs to be 100% off steroids before starting, her dosage should be on the small side, but I would ask her docs to consider starting her when she's down to 10mg or less a day. 

              • May 29, 2017 at 6:17 pm
              Franny
              Participant

                The steroids helped me with joint pain side effects and if the immune system attacks a specific organ i.e. Liver etc

                • May 30, 2017 at 5:34 pm
                cancersnewnormal
                Participant

                  I'm totally going out on a limb with this one, and I'm sure the docs could give you a more solid reason as to why they would like her off of steroids prior to start of immunotherapy… but… since the edema is in her brain, and not a side effect in the body, I'd guess that they don't want to risk any potential risk of additional swelling that a heightened immuno-response might bring. Is it her medical oncologist that is suggesting the wait, or her radiation oncologist? Is there a neuro oncologist who may have more input? I can't imagine your frustration and being placed in a holding pattern. I know that docs tend to get quite uneasy when it comes to brain edema and anything that may potentially exacerbate the problem. I had a perfectly well behaved, gamma treated, brain lesion go "haywire" and start peeing edema all over my brain shortly after the start of Keytruda. I eventually ended up with a second brain surgery because of it. 

                    • June 5, 2017 at 7:17 am
                    RitysMom
                    Participant

                      It was the radiation onc, but her melanoma onc is in agreement. I emailed him and expressed my concerns with the wait. He agreed that the taper could be shortened, but his concern is her beginning immunotherapy right before our family trip to Hawaii and possibly having issues…we're going from 6/20-6/27. I didn't think of that. I just wanted her to start asap. 

                      • June 7, 2017 at 9:03 pm
                      cancersnewnormal
                      Participant

                        Yeah… it's probably wise not to tinker around with what immunotherapy reactions there might be while you're on an island. But ooooooh man… HAWAII! I hope you guys have a great time! : )

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