Should I research side effects or just deal with them
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Should I research side effects or just deal with them

› Forums › General Melanoma Community › Should I research side effects or just deal with them

  • Post
    • September 25, 2019 at 2:50 pm
    DucatiDave
    Participant
      I am new to the site and about to start Opdivo and Yervoy for a recurrence of mucusoal melanome in my liver and lungs.
      I freaked myself out when I learned that some side effects are permanent so I am debating if I want to learn more about side effects or wait and deal with them when they come up.
      I agree that knowledge is power but I am trying to stay positive.
      I would appreciate your thoughts.
      Sorry if this a rehash of an old topic but I cant make myself search the site just yet.
    Viewing 2 reply threads
    • Replies
        • September 25, 2019 at 4:29 pm
        Bubbles
        Participant
          How we deal with life, love and melanoma is intensely personal. However, I would venture to say that most of us on this forum subscribe to the notion that “forewarned is forearmed”! You will have to decide what is best for you. There are many warm, wonderful and knowledgeable peeps on this forum who can bring a great deal of information and solace to fellow melanoma travelers if you let them. Up to you. I wish you my best. Celeste
            • September 25, 2019 at 7:46 pm
            Threefitty
            Participant
              Informational overload and dread is a thing!

              So my individual data point; permanent hypothyrodism. Well known Opdivo side effect.

              I take a pill a day. 200 mg of something. Means nothing to me, zero effect on my life.

              Having completed immunotherepy, which I may never know whether I needed (adjuvant treatment at S3) provides me with better mental well being every day of my life.

              That’s the association I make with that pill, hypothyrodism and also with the occasional pain from my missing (clear) lymph nodes. Which maybe a year later would have been left in. (from back when you had to be in a trial to get adjuvant opdivo and you had to be provably cancer clear to qualify for trial.)

              Seldom does so little inconvenience make so much life and peace of mind possible.

              Good luck .

              • September 27, 2019 at 2:32 am
              DucatiDave
              Participant
                Thanks for the reply’s. I am sort of wading in to the site up to my waist, but not fully diving in just yet.
                First infusion tomorrow and I feel fortunate to have the options I have.
                • September 29, 2019 at 6:28 pm
                BKPmax
                Participant
                  How’s it going so far?
                  The combo Opdivo, Yervoy made me nauseous immediately….pretty bad… but it ended-up removing all my melanoma masses.. more that I bothered to count 😉
                  PS after a single combo treatment, they charged it to Optivo only, for a total of 15 infusions. …and remission. Plenty of aches and pains continue but without question – worth it!
                  • September 29, 2019 at 8:05 pm
                  DucatiDave
                  Participant
                    I made it through the first infusion of Friday so I that was a big relief! Thanks for the positive feedback.
                  • September 25, 2019 at 7:54 pm
                  MelMel
                  Participant
                    Judging by the short paragraph about yourself, I would suggest that you keep yourself informed (the nurses will do that prior to your initial infusion) but that it just remains minimal so that you are aware of the possibilities of issues but not necessarily the details. The nurses are excellent at informing just enough and alleviating your concerns and anxiety. The key thing to remember is that you are in this treatment because the end result of doing nothing is far worse than any side effects you may experience and there is a good chance that the therapy will work and your tumors will shrink or disappear. Whatever side effects may occur, melanoma oncologists are well trained to manage them. So just be aware that side effects are possible but manageable, and that you do not need to get all four initial combo infusions in order to see amazing results. You can always inform yourself down the road should issues arise, should it be necessary or whenever you wish. The information is not going anywhere and neither is the support of the melanoma warriors. In the meantime, remain calm and stay positive.
                    Wishing you all the best.
                    Melanie
                    • September 28, 2019 at 3:47 pm
                    MelanomaMike
                    Participant
                      DucatiDave! Love the name bro! Im more into Triumphs, BSA’s and older Harleys myself…..
                      Youll be fine on the combo man! Ya your nose might fall off, and your skin may turn Wizard blue but youll be fine! Haha…naw Dave, typical stuff that can be treated, Thyroid, Renal cortisol issues no sweat, you wont skip a beat youll muscle threw….
                        • September 29, 2019 at 8:11 pm
                        DucatiDave
                        Participant
                          Thanks. My goal now is to tough it out until the 2nd infusion in 3 weeks.
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