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Need advice and hope

› Forums › General Melanoma Community › Need advice and hope

  • Post
    • August 20, 2020 at 8:50 pm
    sks2019
    Participant
      Providing an update on my mom and seeking hope and advice,
      Diagnosed 2018 with vaginal melanoma, Did nivo for 6 months and then ipi/nivo , progressed to stage 4 with liver,lungs and vaginal mets. She did a trial of Niraparib PARP inhibitor which didnt work for her. Now she is in extreme pain in the right side of her body and unable to walk., bilateral swelling in feet Oncologist at UCSF is suggesting Chemo now.. Carbo+Taxol or temador depending on the scans.
      Scans were done yesterday to see how much she has progressed since June since her pains started only 2 weeks ago and LDH levels are rising , homeglobin dropping.

      she looks very sick now. She is on multiple supplements. I am not sure what else can i do for her. She is afraid of chemo and so am I , seeing what she went through with ipi/nivo and this is going to be more toxic than that plus she will be loosing her hair.

      Has anyone tried this chemo , what has been the experiences. and did it worked for you ? Do we have other choices ? What else have you tried after failing ipi/nivo.

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        • August 20, 2020 at 8:51 pm
        sks2019
        Participant
          Sorry didnt wanted to post as Anonymous
          • August 20, 2020 at 11:09 pm
          Edwin
          Participant
            I hope you can find an effective treatment for your mother’s melanoma and her pain can be made tolerable.

            When I had melanoma in several bones, I took oxycodone-acetaminophen to control pain. I was careful to keep under the liver safe dose, because I had hope that I might live. I did not worry about becoming addicted. If I should die addicted, that would not be a problem. When the pain became less thanks to ipi/nivo, I had no trouble stopping taking oxycodone.

              • August 20, 2020 at 11:16 pm
              sks2019
              Participant
                thanks Ed, you are always out there with your ears open . She was throwing up with oxycodone and on Norco now. I am concerned what lies ahead. Looking for how many folks here have had carbo +taxol successfully.
              • August 21, 2020 at 4:30 am
              JudiAU
              Participant
                I am sorry you both have struggled so much. As the toddler told you what the chemo will give her? Is it a cure? To contain pain? Prolong life, and if so how much? What is the length of treatment and does it prolong quality of life? What would hospice care offer and would that offer a better quality life?
                  • August 21, 2020 at 4:57 pm
                  sks2019
                  Participant
                    thanks Judi, He wants to do two cycles of carbo+taxol and repeat scan , objective is to reduce pain by shrinking the tumor and then start with a targeted treatment trial which is not yet available at UCSF and he working on to getting it approved at UCSF. I am looking for experienes with Carbo + taxol and to my surprise no one on this board has responded so I am thinking not many people go that route
                  • August 21, 2020 at 5:19 pm
                  Bubbles
                  Participant
                    I posted some links re chemo and melanoma in a this thread started by Mark R: https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma-patients-information-page/update-and-question-1

                    Specifically ~

                    The utility of chemotherapy after immunotherapy failure in metastatic melanoma: A multicenter case series. – https://ascopubs.org/doi/abs/10.1200/JCO.2018.36.15_suppl.e21588

                    Chemotherapy for Melanoma Skin Cancer – https://www.cancer.org/cancer/melanoma-skin-cancer/treating/chemotherapy.html

                    The Dartmouth protocol is the chemo combo most often touted for melanoma. However, your mom’s docs may be looking at her combo with more knowledge of her status and reflecting on the fact that hers is mucosal. Here are some links: https://training.seer.cancer.gov/melanoma/treatment/therapies.html#:~:text=Two%20combination%20chemotherapy%20regimens%20commonly,DTIC%2C%20carmustine%2C%20and%20tamoxifen.

                    https://pubmed.ncbi.nlm.nih.gov/10839287/

                    Wishing you both my best. C

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