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dehydration from mouth sores, advice welcome
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dehydration from mouth sores, advice welcome

› Forums › General Melanoma Community › dehydration from mouth sores, advice welcome

  • Post
    • February 20, 2017 at 2:54 am
    Judy Steven’s wife
    Participant

      HI everyone, my husband had his immunotherapy Feb 8, on steroids again Feb 10 because of brain edema, and now we're just home again and waiting for things to get better……which is not happening. Steven is very fatigued and got mouth sores, very painful. Didn't drink enough and ended up in  ER for dehyration. Gets upset with me when I want him to drink more, which is also frustrating. He's feeling miserable because of fatigue and this mouth pain. Any ideas on what to do for mouth sores? We got a miracle mouth wash from the doctor (w/ lidocaine), but is hardly numbs the pain. I also made a saline solution, with some tea tree oil to use a few times a day, but sores are stil there, and more are coming. Makes eating almost impossible (I blend soups). How do you keep your spouse/friend/family member to eat and drink when they feel so miserable?

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    • Replies
        • February 20, 2017 at 4:36 am
        Patina
        Participant

          Could he have thrush?  My Mom had mouth sores with ipi and it took us a few weeks to figure out that it was thrush and by then it was terrible. She wouldn't eat or drink. Everything for her tasted like someone sprayed Raid on her food and in her water. – I've had thrush and my tongue just burned. Took me a really long time to figure it out. Thought I was gluten intollerant.

          Do things taste funny or does his tongue burn too? These were some of my Mom's symptoms. If so, you should call the doctor and tell him/her about it. They can prescribe a mouth wash for it right away. You can also try pro-biotics, sugar free pro-biotic yogurt and make sure he stays away from anything with carbs or sugar. – That makes the thrush grow.

           

           

          • February 20, 2017 at 4:36 am
          Patina
          Participant

            Could he have thrush?  My Mom had mouth sores with ipi and it took us a few weeks to figure out that it was thrush and by then it was terrible. She wouldn't eat or drink. Everything for her tasted like someone sprayed Raid on her food and in her water. – I've had thrush and my tongue just burned. Took me a really long time to figure it out. Thought I was gluten intollerant.

            Do things taste funny or does his tongue burn too? These were some of my Mom's symptoms. If so, you should call the doctor and tell him/her about it. They can prescribe a mouth wash for it right away. You can also try pro-biotics, sugar free pro-biotic yogurt and make sure he stays away from anything with carbs or sugar. – That makes the thrush grow.

             

             

              • February 20, 2017 at 5:58 am
              Judy Steven’s wife
              Participant

                Hi Patina, he had a bit of thrush but that went away quickly after using the tea tree oil. I can see the sores in the mouth, I think they are called canker sores, really painful and drinking/food burns. He does get pro-biotics, whole milk kefir in his smooties en no sugar indeed.

                What did your mom do when she could not eat or drink? Steven has already lost so much weight and gets easily dehydrated. It just worries me how to get nutrients in him, as the more depleted he gets, the worse the weakness/fatigue will be

                • February 20, 2017 at 5:58 am
                Judy Steven’s wife
                Participant

                  Hi Patina, he had a bit of thrush but that went away quickly after using the tea tree oil. I can see the sores in the mouth, I think they are called canker sores, really painful and drinking/food burns. He does get pro-biotics, whole milk kefir in his smooties en no sugar indeed.

                  What did your mom do when she could not eat or drink? Steven has already lost so much weight and gets easily dehydrated. It just worries me how to get nutrients in him, as the more depleted he gets, the worse the weakness/fatigue will be

                  • February 20, 2017 at 12:10 pm
                  debwray
                  Participant

                    Hi Judy,

                    Have a look on Celeste's blog.. She posts as bubbles on here. Think she had big problems with this whilst on Nivo. If you use the search box you should find lots of info but I don't think she ever found a magic bullet for it., unfortunately.

                    Best wishes,

                    Deb

                    • February 20, 2017 at 12:10 pm
                    debwray
                    Participant

                      Hi Judy,

                      Have a look on Celeste's blog.. She posts as bubbles on here. Think she had big problems with this whilst on Nivo. If you use the search box you should find lots of info but I don't think she ever found a magic bullet for it., unfortunately.

                      Best wishes,

                      Deb

                      • February 20, 2017 at 7:20 pm
                      debwray
                      Participant

                        Back home again http://chaoticallypreciselifeloveandmelanoma.blogspot.co.uk/search?q=mouth+ulcers

                        see bit 9/13/2013

                        quote= Learned that I was the ONLY patient out of 120 who had developed mouth ulcers.  Others had developed sore, tender gums and mouth with mucositis…but no ulcers!!!  So, there's hope for the rest of you!!!  Anyhow, though Weber (and my dentist) continued to be very impressed/aghast with the ulcers remaining after treating with Peridex and 24 hours worth of Valcyclovir…I am happy since they are ever so much better and almost pain free…..finally.

                        Drinking straws and crushed iced drinks might also be worth a go….but you have probably tried that already.

                        Best Wishes and thanks as always to Celeste for providing oodles of useful and interesting practical info

                        Deb

                        One step at a time- one day at a time is sometimes the best we can manage…..

                         

                        • February 20, 2017 at 7:20 pm
                        debwray
                        Participant

                          Back home again http://chaoticallypreciselifeloveandmelanoma.blogspot.co.uk/search?q=mouth+ulcers

                          see bit 9/13/2013

                          quote= Learned that I was the ONLY patient out of 120 who had developed mouth ulcers.  Others had developed sore, tender gums and mouth with mucositis…but no ulcers!!!  So, there's hope for the rest of you!!!  Anyhow, though Weber (and my dentist) continued to be very impressed/aghast with the ulcers remaining after treating with Peridex and 24 hours worth of Valcyclovir…I am happy since they are ever so much better and almost pain free…..finally.

                          Drinking straws and crushed iced drinks might also be worth a go….but you have probably tried that already.

                          Best Wishes and thanks as always to Celeste for providing oodles of useful and interesting practical info

                          Deb

                          One step at a time- one day at a time is sometimes the best we can manage…..

                           

                        • February 21, 2017 at 1:38 am
                        Bubbles
                        Participant

                          Sorry Steven (and YOU!!) are dealing with this, Judy!  Deb pretty much gave you the ultimate re my experiences wth mouth ulcers while on Nivo (Opdivo) for 2 1/2 years.  I had a weird taste sensation and strangely dry mouth pretty much from my very first infusion.  At that point I found lemonade helpful. Doesn't seem reasonable does it?  But, my sister would always make sure I had a bottle of pink lemonade to drink on my way home after my infustions.  However, things got worse and worse.  I lost a good deal of weight because some foods burned and sharp foods scratched raw cheeks and gums….and none of it tasted good.  I tried everything.  Perfect oral care.  Lidocaine lollipops…they made my mouth oddly numb but still with pain…and then gave me heart palpitations!!  I did a round of nystatin….in case there was any fungal/thrush component.  In the end I did a combo of peridex (an antibiotic mouth wash) AND a few days of a herpetic treatment.  That combo helped some.  There is some data about folks treated with immunotherapy dealing with herpetic lesions…but not much conclusive has come of it.  In the end….I don't have perfect answers.  Sorry.  Though you could certainly give some of my efforts as a try as they might help.  I still have problems with a dry mouth and do still occasionally have ulcers….never as bad as when I was on treatment.  My last treatment was in 2013.  I guess my favorites were tea with honey and oddly enough things flavored with lemon and vinegar.  I took care of a dear little boy on heavy duty conventional chemo with terrible oral ulcers who adored dill pickles to suck on.  I would buy them for him from the cafe before I went up on my shift.  It sounds backwards….but I liked that too!  I wish you both my best.  celeste

                            • February 21, 2017 at 2:49 am
                            Judy Steven’s wife
                            Participant

                              Thank you Celeste, we will discuss this with the oncologist too. I bought some numbing stuff to put on it, as the 'magical mouthwash' from the doctor didn't do much, and now at least he can drink and eat (=drink soup) at certain times of the day.

                            • February 21, 2017 at 4:35 am
                            tschmith
                            Participant

                              I had to have a week of chemotherapy when I was in a gene transfer clinical trial. They had me brush my teeth with Biotene and also use the Biotene mouth wash. Biotene also makes a spray and a gel.  This was more to help prevent dry mouth, but maybe once this is under control it could at least help.  I've had many types of treatment and still have slight dry mouth even though I've been off treatment for 1 1/2 years. I find that Biotene is soothing.  I also had a brain tumor…those steriods do all kinds of things! My cousin recently had a brain tumor removed and she feels that Keppra is the cause of her dry mouth.  I took Keppra as well as Decadron, but didn't develop mild dry mouth until later on. 

                              I hope he feels better soon and that something will finally help him.

                              All my Best!

                              Terrie

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