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First round of IPI/Nivo feeling similar to before diagnosis – painful!
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First round of IPI/Nivo feeling similar to before diagnosis – painful!

› Forums › General Melanoma Community › First round of IPI/Nivo feeling similar to before diagnosis – painful!

  • Post
    • January 21, 2018 at 4:30 am
    Lddaughter
    Participant

      Hi everyone,

      I know it has been awhile since I have checked in. My mom is almost 1 year from getting really sick and getting a stage 4 diagnosis. In March 2017 she started on Taf/Menk combo and did was doing great! Late December scans showed that she had stopped shrinkage and was holding her 1.7×1 cm liver tumor/rest of them stable. So they decided to switch her to IPI/Nivo infusions.

       

      My mom had her 1st infusion on January 12th. Now I know these affect everyone differently so there is no magic answer to this but 1 week later she feels like she did before diagnosis. She is weak and her liver feels bloated/painful. She developed an itchy rash too but we expected that and are controlling with Benadryl and hydrocortisone cream. My question is can these side effects be this drastic after even the 1st infusion? Is there anything to be aware of? No fever, no gut problems just uncomfortable and in pain. 

       

      On a side note, she left me again (getting treatment 5 hours from home) and has worked 10 hour, long labor intensive days. She is also not eating the best but there is nothing I can do until she gets back to KC with me. I keep telling her she is overworking herself but she isn't listening. I am making her call the Dr. to report everything Monday and hopefully get at least a blood work up to see if we can identify what is going on. I want to make the best of these infusions and am scared of what will happen if these don't work. She has been doing amazing the last 9-10 months so this really feels like a big push backwards.

      Any information or reassurance would be great. Thank you,

       

      Aubrey

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        • January 21, 2018 at 3:33 pm
        Ridingaroundwith27Jennifers
        Participant

          Hi Aubrey,

          I would definitely urge your mom to report the liver pain to her DR as soon as possible.  Call today, leave a message with the doctor on call.  Don't wait for the next appointment.  I had two rounds of ipi/nivo and then very severe liver issues which forced me to stop treatment.  Better to catch any adverse reactions before they get too bad.  That said, I had a very positive response to the two rounds of treatment.  Keep pushing your Mom to rest.  This treatment can take a lot out of a person.  

          You are doing a great job.  Keep it up and don't get too stressed out.  It isn't easy but you and your Mom can do this.  Don't worry about the what if's right now.  Just focus on each day as it presents itself.  Easy to say but hard to do.

          Good wishes to you both.

          Jennifer

          • January 24, 2018 at 8:23 pm
          Sharon93065
          Participant

            i switched to allegra for the rashes as it didn't make me as tired as benedryl.I I did the 24 hour but that might not have been as good for my liver.  So i switched to 12 hours.  Taken in the am. Did not get to actually use the 12 hour because like like Jennifer my liver panel is toxic and only had 3 infusions.  Fatigue is normal. 

            • January 24, 2018 at 8:23 pm
            Sharon93065
            Participant

              i switched to allegra for the rashes as it didn't make me as tired as benedryl.I I did the 24 hour but that might not have been as good for my liver.  So i switched to 12 hours.  Taken in the am. Did not get to actually use the 12 hour because like like Jennifer my liver panel is toxic and only had 3 infusions.  Fatigue is normal. 

              • January 24, 2018 at 8:24 pm
              Sharon93065
              Participant

                i switched to allegra for the rashes as it didn't make me as tired as benedryl.I I did the 24 hour but that might not have been as good for my liver. (with doctors permission)   So i switched to 12 hours.  Taken in the am. Did not get to actually use the 12 hour because like like Jennifer my liver panel is toxic and only had 3 infusions.  Fatigue is normal. 

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