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Reoccurring Side Effects
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Reoccurring Side Effects

› Forums › General Melanoma Community › Reoccurring Side Effects

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    • July 21, 2019 at 4:56 pm
    Carlsbad317
    Participant
      The last Ipi/Nivo infusion was June 7th, last radiation was the first week in July since then gradually have felt better, less trips to the restroom, firming stools, not as cold and not shaking, less swelling and more energy! Almost feeling among the living again! Woke up two days ago noticed the swelling and all symptoms/side effects have returned just like I had a treatment a week ago.
      Anyone else experiencing this and an explanation? In my mind I am thinking since the treatment continues to work – it is the body fighting or sound something more to fight so it has kicked in…
      Thanks for sharing.
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    • Replies
        • July 21, 2019 at 7:16 pm
        Bubbles
        Participant
          Hey Hanlon,

          I took nivo as a single agent for 2 1/2 years. For over a year afterwards the side effects I had while on it (rash, fatigue, wheezing, mouth ulcers and joint pain specifically) would wax and wane, never quite getting as bad as the worst episodes during treatment, but fits and flares happened repeatedly, while waning gradually. Many others here have reported a similar experience. However, I think it would certainly be best to run any symptoms, especially if they include swelling, by your doc just to be sure. Yours, celeste

            • July 21, 2019 at 8:04 pm
            Carlsbad317
            Participant
              Thank you for replying! All makes me feel better,. Wow, just the Nivo did all that to you? Starting the maintenance once the diarrhea subsides of Nivo, they made it sound so much easier on the body than the combo…… that does not sound easier! I really appreciate your sharing. I know none of this is easy but this website is the best resource.
              • July 21, 2019 at 9:05 pm
              Bubbles
              Participant
                I think the ipi/nivo combo is much worse than nivo alone. You should feel much better (comparison is everything – huh???!) once you are only on nivo. Take care. c
                • July 21, 2019 at 11:11 pm
                Carlsbad317
                Participant
                  That’s the plan! Looking forward to just the one, for sure!!
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