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1st Nivo
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1st Nivo

› Forums › General Melanoma Community › 1st Nivo

  • Post
    • November 15, 2018 at 11:17 pm
    kannevans
    Participant

      Hello all, 

      I am new to this forum and this is my first post. I have been reading all your posts and this place has been my sanity since finding out I had Melanoma in August. It seems like it has been an eternity but really hasn’t been long. Went through all the biopsy’s , scams, surgery and now I completed my first infusion of Nivo on Monday. I feel like I am nauseous and almost like the flu but it comes and goes. Today was the worst but yesterday I felt normal , Is this normal and should be expected? 

       

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    • Replies
        • November 16, 2018 at 2:19 am
        MelMel
        Participant

          Welcome, I am new as well! Unfortunately, I cannot help you much since I had my first infusion of combined Yervoy and Optivo two weeks ago. I felt fine except for flu like symptoms for a day or so and a bit of nausea but it went away.  My next treatment is on the 21 st. Good luck!

          Melanie

            • November 16, 2018 at 2:34 am
            MelMel
            Participant

              that should have read Yervoy and Opdivo*

              • November 17, 2018 at 11:12 am
              kannevans
              Participant

                Hi Mel, 

                i was thinking maybe I had a slight cold at the same time. I feel better today so I’m not going to worry about it. My next treatment is Dec 20th. Good luck!!!

                Kris

                • November 19, 2018 at 8:51 pm
                MelanomaMike
                Participant

                  MelMel, nice to meet you, im Mike and have gone the distance with what your taking, the Yervoy and Opdivo combo, iv completed the Yervoy {thank god} and now im at #7 of Opdivo by itself. I had a hard time just about 6 days into my 1st infusion, thought it was over for me, i suffered for about a week of no apitite, head throbs, severe vomiting every five minutes etc, but, i got through it like a Rodeo, i hung on with out "Tapping Out" and once my apitite came back {thanks to Megace, wich i call God} everything got better.. You may make it through with little to no side effects and remember this! just because your not having heavy effects, doesnt mean the ipi/nivo isnt working for you! {a misconception thats out there}.. hang in there! keep yer Oncologist"s phone number on Speed Dial & make sure you dont run a high fever {buy a thermometer}…youll be alright, im sure of it…

                • November 17, 2018 at 5:38 pm
                KellyH
                Participant

                  Hi Kris!!! 

                  My son has completed his first 6 months of Nivo and has had very little side effects, knock on wood. He said he’s tired but he is also a teenager so it’s hard sometimes to really determine what is treatment tired or teenage tired..lol.. 

                  He goes every 2 weeks for treatment..after Xmas we are going to switch him to monthly treatments for his final doses to make his treatments more manageable with his college classes and college baseball schedule. My son has stayed very active throughout his treatment and continues to live his life with minimal interruption besides the frequent doctor visits and tests etc…It seems every patient is different and the doctors have said his age is definitely in his favor…but most people do seem to do ok with the Nivo from what i have read. 

                  Good luck to you!!!! Hopefully you will sail through treatment without any issues!!!  

                  Kelly 🙂 

                    • November 21, 2018 at 3:03 am
                    kannevans
                    Participant

                      Hi Kelly!

                      That's great to hear your son has done so well with the treatment. I'm sure age has a lot to do with it because not much slows kids down these days 🙂 I think anxiety has a lot to do with my issue. I cant take any meds without getting sick so I was so worried my body was going to have a rough time. I had surgery on my foot to remove my tumor and they almost had to remove my 2 toes, it was pretty bad! So they gave me pain meds of all types and I couldnt take any of it because they made me so sick. I suffered through the pain with nothing but nerve meds that I was supprisingly able to tolerate. Now 2 months later I am finally able to partially walk again. I am hoping to make it through with minimal issues. Thank you for your feedback and good luck on your sons monthly visits!!! 

                      Kris 🙂

                    • November 19, 2018 at 8:34 pm
                    MelanomaMike
                    Participant

                      Hi Kris, im Mike, we may have replied to eachother before, you may have forgotten with all that goes on in our "shared" Melanoma Lives, your first "post" was actually in October {25th} when you introduced your self :}…Welcome to Club Nivo! and your right on schedule with the ickyness, the Flu like symptoms etc. Nivo should be very mild, however, keep an eye on yourself, plus, your blood work will reveal anything out the ordinary "before" each infusion so, your covered for anyother symptoms that may pop up that you may not even feel! {weird stuff huh?}…youll be fine Kris, stay onboard & keep us posted…

                        • November 21, 2018 at 3:12 am
                        kannevans
                        Participant

                          Hi Mike,

                          You are absolutely right I did post before (brain fart 🙂 I enjoy being here, I know that everyone here understands and thats means the world. So this last week was a bit of up and down like a rollercoaster. Some days were okay and then some days were bad. Today was a great day, felt somewhat normal whatever that is. I felt like I didnt want to call eventhough they told me to call at any sign of a symptom. I didnt want to feel like a bother or worry wart. Thats something I have to work on myself because I will tolerate a lot before I address it- which led me to where I am at now (stubborn me) Just hoping for smooth sailing. Thank you, I appreciate your feedback and will keep you in my thoughts as you approach your next surgery date!

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