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Dry mouth
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Dry mouth

› Forums › General Melanoma Community › Dry mouth

  • Post
    • February 21, 2014 at 9:13 pm
    SBeattie
    Participant

      Hi everyone, say, has anyone experienced a super dry mouth while on yervoy OR nivo OR both? I'm not finding anything 'outstanding'  re: this for either drug…thanks so very much…

       

    Viewing 8 reply threads
    • Replies
        • February 21, 2014 at 9:40 pm
        Bubbles
        Participant

          Definitely!!!  I did 2 1/2 years of Nivolumab and dry mouth, weird taste, and eventually mouth ulcers were a problem for me.  Mucositis is a fairly common problem with Nivo, according to Dr. Weber who ran the trial.  Apparently, I was the only one in my trial (at least per the report on our last visit) who developed full fledged ulcerations, so hopefully neither you nor any others will go that far!!!  Lemonade soon after my infusion made the taste and sensation better for me.  But…don't really have a solution for you…but it's for real!  You aren't imagining things!!!  Hang in there!  Celeste (Chaoticallypreciselifeloveandmelanoma)

            • February 21, 2014 at 10:15 pm
            sofistef
            Participant

              I have this problem also. The inside of my mouth feels rough and inflamed. I also have some mouth ulcerations. I'm on the phase III Nivo/ IPPI/ Nivo+IPPI trial.  I also remember after the first couple infusions I had runny nose, similar with  a bad allergic reation along with some nose bleeding . It went away after a month or two. During that time, I had lots of small itchy blisters on my palms and soles that also went away after two months into treatment. I don;t know what medicine I'm getting, I hope I'm getting at least Nivo if not the combo, but the symptoms were more after the Nivo infusions!! Next week I will have the first set of scans, hopefully I will hear some good news!! I have no epithet to describe my anxiety!

               

              Dana

              • February 21, 2014 at 10:15 pm
              sofistef
              Participant

                I have this problem also. The inside of my mouth feels rough and inflamed. I also have some mouth ulcerations. I'm on the phase III Nivo/ IPPI/ Nivo+IPPI trial.  I also remember after the first couple infusions I had runny nose, similar with  a bad allergic reation along with some nose bleeding . It went away after a month or two. During that time, I had lots of small itchy blisters on my palms and soles that also went away after two months into treatment. I don;t know what medicine I'm getting, I hope I'm getting at least Nivo if not the combo, but the symptoms were more after the Nivo infusions!! Next week I will have the first set of scans, hopefully I will hear some good news!! I have no epithet to describe my anxiety!

                 

                Dana

                • February 21, 2014 at 10:15 pm
                sofistef
                Participant

                  I have this problem also. The inside of my mouth feels rough and inflamed. I also have some mouth ulcerations. I'm on the phase III Nivo/ IPPI/ Nivo+IPPI trial.  I also remember after the first couple infusions I had runny nose, similar with  a bad allergic reation along with some nose bleeding . It went away after a month or two. During that time, I had lots of small itchy blisters on my palms and soles that also went away after two months into treatment. I don;t know what medicine I'm getting, I hope I'm getting at least Nivo if not the combo, but the symptoms were more after the Nivo infusions!! Next week I will have the first set of scans, hopefully I will hear some good news!! I have no epithet to describe my anxiety!

                   

                  Dana

                • February 21, 2014 at 9:40 pm
                Bubbles
                Participant

                  Definitely!!!  I did 2 1/2 years of Nivolumab and dry mouth, weird taste, and eventually mouth ulcers were a problem for me.  Mucositis is a fairly common problem with Nivo, according to Dr. Weber who ran the trial.  Apparently, I was the only one in my trial (at least per the report on our last visit) who developed full fledged ulcerations, so hopefully neither you nor any others will go that far!!!  Lemonade soon after my infusion made the taste and sensation better for me.  But…don't really have a solution for you…but it's for real!  You aren't imagining things!!!  Hang in there!  Celeste (Chaoticallypreciselifeloveandmelanoma)

                  • February 21, 2014 at 9:40 pm
                  Bubbles
                  Participant

                    Definitely!!!  I did 2 1/2 years of Nivolumab and dry mouth, weird taste, and eventually mouth ulcers were a problem for me.  Mucositis is a fairly common problem with Nivo, according to Dr. Weber who ran the trial.  Apparently, I was the only one in my trial (at least per the report on our last visit) who developed full fledged ulcerations, so hopefully neither you nor any others will go that far!!!  Lemonade soon after my infusion made the taste and sensation better for me.  But…don't really have a solution for you…but it's for real!  You aren't imagining things!!!  Hang in there!  Celeste (Chaoticallypreciselifeloveandmelanoma)

                    • February 22, 2014 at 4:05 am
                    mau
                    Participant

                      Yes!  I drank a ton of water and always felt thirsty .  Dentist recommended biotene. There is mouthwash and toothpaste. It especially helped through the night.  It is available at any drugstore / Target. My dentist gave me samples:)

                      i also had food issues and realized after a month I was only eating white foods…yogurt, rice, potatoes, bananas .  Peculiar. 

                      Wish you well and a successful treatment. 

                      • February 22, 2014 at 4:05 am
                      mau
                      Participant

                        Yes!  I drank a ton of water and always felt thirsty .  Dentist recommended biotene. There is mouthwash and toothpaste. It especially helped through the night.  It is available at any drugstore / Target. My dentist gave me samples:)

                        i also had food issues and realized after a month I was only eating white foods…yogurt, rice, potatoes, bananas .  Peculiar. 

                        Wish you well and a successful treatment. 

                        • February 22, 2014 at 4:05 am
                        mau
                        Participant

                          Yes!  I drank a ton of water and always felt thirsty .  Dentist recommended biotene. There is mouthwash and toothpaste. It especially helped through the night.  It is available at any drugstore / Target. My dentist gave me samples:)

                          i also had food issues and realized after a month I was only eating white foods…yogurt, rice, potatoes, bananas .  Peculiar. 

                          Wish you well and a successful treatment. 

                          • February 22, 2014 at 10:31 pm
                          paul Lyons
                          Participant

                            I had these symptoms from other treatments. For mucusitus I was helped by something called Stanford Protocol (a rinse and swallow). Biotene helps a little for dry mouth, and for mouth health, and they make small spray products as well.

                            • February 22, 2014 at 10:31 pm
                            paul Lyons
                            Participant

                              I had these symptoms from other treatments. For mucusitus I was helped by something called Stanford Protocol (a rinse and swallow). Biotene helps a little for dry mouth, and for mouth health, and they make small spray products as well.

                              • February 22, 2014 at 10:31 pm
                              paul Lyons
                              Participant

                                I had these symptoms from other treatments. For mucusitus I was helped by something called Stanford Protocol (a rinse and swallow). Biotene helps a little for dry mouth, and for mouth health, and they make small spray products as well.

                                  • March 7, 2014 at 6:23 pm
                                  SBeattie
                                  Participant
                                    Thank you all…encouraging that maybe I’m getting Nivo…o
                                    In phase II study…nivo/placebo:ipi/placebo:or nivoipi…gums are sore…one ulcer but dealing with it! Glad I’m not crazy…
                                    • March 7, 2014 at 6:23 pm
                                    SBeattie
                                    Participant
                                      Thank you all…encouraging that maybe I’m getting Nivo…o
                                      In phase II study…nivo/placebo:ipi/placebo:or nivoipi…gums are sore…one ulcer but dealing with it! Glad I’m not crazy…
                                      • March 7, 2014 at 6:23 pm
                                      SBeattie
                                      Participant
                                        Thank you all…encouraging that maybe I’m getting Nivo…o
                                        In phase II study…nivo/placebo:ipi/placebo:or nivoipi…gums are sore…one ulcer but dealing with it! Glad I’m not crazy…
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