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Mucosal melanoma- multiple recurrences.
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Mucosal melanoma- multiple recurrences.

› Forums › Mucosal Melanoma Community › Mucosal melanoma- multiple recurrences.

  • Post
    • September 30, 2013 at 5:29 pm
    Muru
    Participant

      Dear All,

      I am living out of India.
       
      I am a melanoma Stage III patient with Unrectable tumor in my Neck. I have multiple Tumors in the Neck and LaryngoPharynx area. 
       
      Please find attached the summary of the treatment.
       
      Summary of the treatment
      I had mucosal melanoma in Tongue in 2007 and my 2/3 of the tongue has been removed in the first surgery . I was under constant observation. I was cancer free for 5.5 years. in Jan 2013 melanoma has recurred again in my larynx area. . Now my entire Voice Box has been removed on Feb 6th 2013 during the second surgery. ImmunoHistoChemistry for C-KIT had done and it had come as positive in my specimen. My Consutant said there is no need to do C-KIT mutation and we could take the C-KIT inhibitor Imatinib oral tablet. I took Imatinib tablets for about a month.
      But still Melanoma has come back to me again in Right Side Level II and Level IV Lymphnodes within 3 months of my 2nd Surgery. I had undergone 3rd Surgery for the radical Neck Dissection of Lymphnodes in May 2013.I was under Interferon Injection for the last 3 months, Melanoma has recurred again in Laryngopharynx and Neck nodes. Surgeons have told that surgery is no more possible for my case. As per PET CT it has not spread to any other internal part of the body.  But still it means I am having high risk of getting into Stage IV. My braf mutation is negative. I need your advice on how Can I come out of this Melanoma successfully .
       
      I am trying to see best option for my disease. IPI vs TIL Vs Biochemo.

      My oncolgist recommends to take ipi for 6 months with 8 doses. But it is too costly to import to india. it costs about $200kUSD, which is too expensive.Do we have any way to participate in clinical trials where in the medicine cost couldbe free and hospital expenses + other expenses could be less than 200KUSD.Will they allow international patients without US Insurance.

      How about the results of TIL trials with respect to IPI? Is it  better?

      Also how do we compare biochemo resuts with IPI?

      I need to take one strong decision based on your feedback.

      Please share your views.

      Thanks,

      Muru

        

       

       

       

    Viewing 2 reply threads
    • Replies
        • September 30, 2013 at 6:04 pm
        POW
        Participant

          I am sorry that you are having such a difficult time. I hope that somebody here will be able to provide you with the information you need. In the meanwhile, I suggest that you also post your question on the Melanoma International Foundation forum ( http://forum.melanomainternational.org/mif/index.php ). The MIF is also an excellent resource for melanoma patients and they have many more international members than we do. Their forum moderator, Catherine Poole, is very knowledgeable about clinical trials and is very available to answer questions. Just today she posted the following:

          "IPI/PD1 Trial with Merck

          This trial: http://clinicaltrials.gov/show/NCT01866319is comparing two different doses of PD1 vs. IPI. It has many trial locations globally, a few nationally. I have a list if you are interested. Please note you can have prior therapy, BUT no prior IPI.–Catherine Poole"

          • September 30, 2013 at 6:04 pm
          POW
          Participant

            I am sorry that you are having such a difficult time. I hope that somebody here will be able to provide you with the information you need. In the meanwhile, I suggest that you also post your question on the Melanoma International Foundation forum ( http://forum.melanomainternational.org/mif/index.php ). The MIF is also an excellent resource for melanoma patients and they have many more international members than we do. Their forum moderator, Catherine Poole, is very knowledgeable about clinical trials and is very available to answer questions. Just today she posted the following:

            "IPI/PD1 Trial with Merck

            This trial: http://clinicaltrials.gov/show/NCT01866319is comparing two different doses of PD1 vs. IPI. It has many trial locations globally, a few nationally. I have a list if you are interested. Please note you can have prior therapy, BUT no prior IPI.–Catherine Poole"

            • September 30, 2013 at 6:04 pm
            POW
            Participant

              I am sorry that you are having such a difficult time. I hope that somebody here will be able to provide you with the information you need. In the meanwhile, I suggest that you also post your question on the Melanoma International Foundation forum ( http://forum.melanomainternational.org/mif/index.php ). The MIF is also an excellent resource for melanoma patients and they have many more international members than we do. Their forum moderator, Catherine Poole, is very knowledgeable about clinical trials and is very available to answer questions. Just today she posted the following:

              "IPI/PD1 Trial with Merck

              This trial: http://clinicaltrials.gov/show/NCT01866319is comparing two different doses of PD1 vs. IPI. It has many trial locations globally, a few nationally. I have a list if you are interested. Please note you can have prior therapy, BUT no prior IPI.–Catherine Poole"

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