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Questions about side effects

Forums General Melanoma Community Questions about side effects

  • Post
    gmschmidt
    Participant

      I will be starting immunotherapy treatments next week.   Nivo.   Naturally my Dr. discussed side effects with me but here's what I didn't ask.  As far as nausea, rashes, fever, etc., are concerned, for the most part…is it typically something that starts right after treatment and then gradually subsides until your next treatment or is it something that stays with you.  I know everyone is different and experiences different side effects, but I would like to hear about your experiences.  If I do have some or all of the side effects I would like to know if it will remain an issue or if I might start feeling better after a few days or a week.  Also, does it get any better after additional treatments or stay the same.  In other words can you build a tolerance the side effects once your body is more used to the drug.  From what I'm reading it sounds like that's unfortunately not the case; as some people mentioned having to stop a particular treatment because of side effects.  

      Thanks everyone, and as always hoping and praying for the best for all of you!

       

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        cancersnewnormal
        Participant

          Unfortunately, it is quite individual, so you won't know until you begin the infusions. I had zero issues with Yervoy, other than my thyroid going out. A little over a year later, I began Keytruda, and had very few issues with that. It hit my thyroid a little harder, so my synthroid dose was bumped up… but other than some very mild diarrhea, it was trouble free for a year and a half. Rid me of the melanoma quite nicely too! The trick with immunotherapy treatments, is that they tend to build up, rather than a body developing tolerance. Although, that sometimes happens with particular side effects, it seems more the oddity than the norm. Most often, if there is a severe reaction, it will happen in the first few doses, and your docs will put you on steroids for control. However, for other issues, sometimes it takes over a year before your body will tell you that it has had quite enough, and things like pancreatitis and inflammatory arthritis happen. Ideally, we get the infusions with  most minimal side effects… it "melts away" the cancer… and we stop prior to the development of further issues. It is in the realm of possibilities that this will happen for you. Fingers crossed that it destroys any spare melameat within you, and you still feel like a normal human! : )

          The side effects vary so much from person to person so there's no way of telling what your experience will be like.  I'm usually very tired the day following the infusion and then am a bit less fatigued as time goes by.  Some days I'm very itchy and others mildy so.  It varies for me.  My thyroid function went after the 4th or 5th Nivo only infusion.  When I was on the combo Yervoy/Nivo I got mild fevers a day or two after the treatments which resolved by the fourth day post treatment.  However I experienced nausea and severe fever 6 days after the second combo infusion.  This was due to hepatitis and was controlled via steroids and cellcept which is an immunosuppressor.  Nivo alone side effects haven't been too bad for me.  Hopefully you tolerate it well. This isn't like traditional chemo where you get an infusion and are sick within a few hours.  (My mother in law had chemo for breast cancer and would be severely and violently ill for hours to days post treatment and it would then wane a bit.)  Please remember to track and report any symptoms or potential side effects to your DR as soon as possible so they can evaluate and treat you if needed.

          Best wishes to you,

          Jennifer

          gmschmidt
          Participant

            Thanks everyone.  That presentation is quite informative, but I like hearing the personal experiences as well.  It was all very helpful.

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