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Checking in after starting ipi/nivo
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Checking in after starting ipi/nivo

› Forums › General Melanoma Community › Checking in after starting ipi/nivo

  • Post
    • May 26, 2018 at 10:32 pm
    Dwarla
    Participant

      I am stage IV metastatic melanoma since November of 2016. I did a year of pembro and had a break. I had 2 enlarged lymph nodes positive for melanoma besides the few lesions I already had on liver, lungs and L4. I started ipi/nivo the 21st of May. The first time I had no problems. The last treatment has killed my mouth. My lips and cheeks are swollen and my mouth hurts so bad I have trouble eating, talking and drinking. I had tried magic mouthwash before but it seemed to make things worse. I am willing to try anything!!!! I use baking soda, dry mouth rinse. Does anybody else have this problem? Does anybody have ideas? I plan to try magic mouthwash again but I can't get any until Tuesday now. I'm also looking into herbal remedies.

      Robin

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    • Replies
        • May 26, 2018 at 10:44 pm
        BillB
        Participant

          Hi Robin, sorry this is happening to you. I don’t know if this will help but my radiation oncologist prescribed a dexamethasone solution to rinse my mouth 4 times per day. The inside of the right side of my mouth, tongue and throat was burned from the radiation treatments. The dexamethasone rinse helped immensely. At the worst point it helped a lot but didn’t remove all of the soreness. I also took ibuphophen when needed. Hope this helps, ( Dexamethasone 100 mg IN NS 150 Ml irrig)

          Bill

            • May 27, 2018 at 3:02 pm
            Dwarla
            Participant

              Thank you, Bill. I will ask my oncologist next time I see her. It sounds like yours would hurt more than mine. I've never had to have radiation. I've also wondered why all of the rinses for dry and sore mouths are minty and peppermint! Lol it seems that they should be something soothing! 

              I hope you are doing well!

              Robin

            • May 28, 2018 at 1:45 pm
            Gene_S
            Participant

              Hello Dwarla,

              I don't know if this will work or not but  coconut oil has so many good properties it is worth a try and it won't hurt if you ingest it.

              Virgin Coconut Oil to the Rescue

              You can apply virgin coconut oil directly to the sore to soothe and cool, boost your body's natural defenses, reduce inflammation, and accelerate healing.

              Virgin coconut oil is chock full of antibacterial, antiviral and antifungal properties that can help kill the pathogens that sometimes cause mouth ulcers. Pacific Islanders who consume a great deal of coconut are known for their stellar dental health.

                • June 1, 2018 at 11:02 pm
                Dwarla
                Participant

                  Hello Gene…. I had read about coconut oil. I will have to get some. I love coconut……maybe I'll just start eating that! I did get some medicine from my doctor that has helped with the mouth pain and sores. I still have a lot of swelling. I really hope that when I'm on just Opdivo that my mouth will be better. 

                  Robin

                • May 29, 2018 at 11:28 pm
                MelanomaMike
                Participant

                  Im right with ya Dwarla {Robin}, my gums are a lil sore, and teeth are a il' sensitive i use Synsedyne now, it helps, sounds like your situation may be a bit more extreme & im so sorry to hear this! i just cured my own side effects! i had Leg & knee pains, extreme nausea and NO APPETITE at all for the past week and a half maybe even 2 weeks, one trip to UrgentCare, wich doc just gave me Neproxin wich is fine except made my nausea even worse {how am i suppose to take it on full stomache when i cannot eat?} tooks pain away though…Then, my last trip to the ER this time {i have Kaiser} ER said i was fine, ran an IV for a few hours and gave me a clean bill of health {minus the Melanoma haha} i even requested Megace for hunger wich they did not give, but my Oncologist gave me Compozine wich seems to work better  for Nausea then those "melts" sublingual types she gave before, the taste on empty stomace NOT a good idea..Still, they had nothing for appetite so, my wife is a care giver & the old man she tended too took stuff called  "Megace"  for hunger, and unfortunetly the oldman passed away Sunday nite & the guys son said it was ok to let me have it, guess what? 2 teaspoons within 24hrs and my hunger is alive and well baby!!! thats stuff was {is} a miracle!! i just found out its $400 a bottle haha, maybe thats why they didnt give it lol…I bought CBD & THC olis for pain {and nausea} which works great for my legs & knees..Like yerslf, ill be taking my "2nd" Ipi/Nivo combo this Friday June 1st, so, keep eachother in the loop for side effects & remedys!! try sucking on Halls medicated Honey or cherry an idea?…take care Robin WE ARE GUNNA BEAT THIS CRAP!!!..Take care..Mike

                    • June 1, 2018 at 11:19 pm
                    Dwarla
                    Participant

                      Hey Mike…I've read several of your posts and it sounds like you are having a tough time. I know it's very important to stay hydrated. My lips look like they've been bee stung. I want to eat but my mouth is so sore that I can't very easily. The doctor prescribed some different mouthwash and Mycelex lozenges. Those have helped but I still can't eat much. The CBD and THC oils are legal where you are? I don't think we can get this in Virginia. Thank you, Mike, for your encouragement. We have to beat this crap! I hope your treatment went well today and you stay strong and feeling great!!!!

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