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Mucosal melanoma – Yervoy response

Forums Mucosal Melanoma Community Mucosal melanoma – Yervoy response

  • Post
    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 came as positive and tried C-KIT inhibitor Imatinib oral tablet for 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 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.  My braf mutation is negative. 
       
      Imported Yervoy and took the first dose of yervoy on Dec 5th. I did not have any side effects so far…
       
      Also I did not see any see any response so far for the  last 10 days. Still the tumor growth is in increasing trend..
       
      Is it too early to see the response from yervoy. How long we can wait for Yervoy to respond. Please let me know your opinion on this.
       
      If Yervoy does not work, do we have any other option? Is high dose IL -2 an option? 
       

      Please share your views.

      Thanks,

      Muru

    Viewing 5 reply threads
    • Replies
        arthurjedi007
        Participant

          I just took my 2nd dose of yervoy 7 days ago. They told me I would see no side affects on the 1st dose and I might start seeing them on the 2nd. They also said Yervoy takes quite awhile to work. Even months they said. They also said if I start seeing side affects that is a good thing because it means it is working. They also said they see the best results with people who have the most side affects. The dr/nurse telling me this have been doing yervoy way back when it was in trials so I believe them. I had no side affects with the 1st dose. So far all I've had was the night of the 2nd dose I was very dizzy. Also several short hour long stomach churnings that come and go. I have no idea about high dose IL-2. I know yervoy and nivolumab work in similar ways and are supposed to be good for the long term success but they take a long time to work.

          arthurjedi007
          Participant

            I just took my 2nd dose of yervoy 7 days ago. They told me I would see no side affects on the 1st dose and I might start seeing them on the 2nd. They also said Yervoy takes quite awhile to work. Even months they said. They also said if I start seeing side affects that is a good thing because it means it is working. They also said they see the best results with people who have the most side affects. The dr/nurse telling me this have been doing yervoy way back when it was in trials so I believe them. I had no side affects with the 1st dose. So far all I've had was the night of the 2nd dose I was very dizzy. Also several short hour long stomach churnings that come and go. I have no idea about high dose IL-2. I know yervoy and nivolumab work in similar ways and are supposed to be good for the long term success but they take a long time to work.

            arthurjedi007
            Participant

              I just took my 2nd dose of yervoy 7 days ago. They told me I would see no side affects on the 1st dose and I might start seeing them on the 2nd. They also said Yervoy takes quite awhile to work. Even months they said. They also said if I start seeing side affects that is a good thing because it means it is working. They also said they see the best results with people who have the most side affects. The dr/nurse telling me this have been doing yervoy way back when it was in trials so I believe them. I had no side affects with the 1st dose. So far all I've had was the night of the 2nd dose I was very dizzy. Also several short hour long stomach churnings that come and go. I have no idea about high dose IL-2. I know yervoy and nivolumab work in similar ways and are supposed to be good for the long term success but they take a long time to work.

              JerryfromFauq
              Participant

                If you are in good enough physical shape, Mentally, heart and lungs fair IL-2 should be an option.  If you go to it you want to do it at a location that is well experiencedd with hndling the side effects.  It can bae roug, but you know shortly if you area responding, and are unlikely to have any long term negative side effects.  I had 49 bags spread over 20 months of si,x 6 day administration periods in a special IL-2 ward.  The IL-2 extended my life with a good quality for those 20 months, before my stable mets once more became fast growing and innumerabale new mets arouse.  A new development had arisen and I have continued essentil stable on Gleevec  for another 5 years so far.

                      There have been three follow-on targeted drugs test being used now on GIST, which is anothe cancer that is quite likely to have a C-kit mutation.

                SUTENT:  SUTENT is used when the medicine Gleevec® (imatinib mesylate) did not stop the cancer from growing or when you cannot take Gleevec.

                Tyrosine kinase inhibitors (TKI) are used for the treatment of various cancers. Case reports and clinical trials have reported abnormal thyroid function tests (TFT) after treatment with sunitinib, imatinib, sorafenib, dasatinib, and nilotinib. An increased requirement for levothyroxine was reported in thyroidectomized patients during TKI treatment.

                 

                Good luck.

                JerryfromFauq
                Participant

                  If you are in good enough physical shape, Mentally, heart and lungs fair IL-2 should be an option.  If you go to it you want to do it at a location that is well experiencedd with hndling the side effects.  It can bae roug, but you know shortly if you area responding, and are unlikely to have any long term negative side effects.  I had 49 bags spread over 20 months of si,x 6 day administration periods in a special IL-2 ward.  The IL-2 extended my life with a good quality for those 20 months, before my stable mets once more became fast growing and innumerabale new mets arouse.  A new development had arisen and I have continued essentil stable on Gleevec  for another 5 years so far.

                        There have been three follow-on targeted drugs test being used now on GIST, which is anothe cancer that is quite likely to have a C-kit mutation.

                  SUTENT:  SUTENT is used when the medicine Gleevec® (imatinib mesylate) did not stop the cancer from growing or when you cannot take Gleevec.

                  Tyrosine kinase inhibitors (TKI) are used for the treatment of various cancers. Case reports and clinical trials have reported abnormal thyroid function tests (TFT) after treatment with sunitinib, imatinib, sorafenib, dasatinib, and nilotinib. An increased requirement for levothyroxine was reported in thyroidectomized patients during TKI treatment.

                   

                  Good luck.

                  JerryfromFauq
                  Participant

                    If you are in good enough physical shape, Mentally, heart and lungs fair IL-2 should be an option.  If you go to it you want to do it at a location that is well experiencedd with hndling the side effects.  It can bae roug, but you know shortly if you area responding, and are unlikely to have any long term negative side effects.  I had 49 bags spread over 20 months of si,x 6 day administration periods in a special IL-2 ward.  The IL-2 extended my life with a good quality for those 20 months, before my stable mets once more became fast growing and innumerabale new mets arouse.  A new development had arisen and I have continued essentil stable on Gleevec  for another 5 years so far.

                          There have been three follow-on targeted drugs test being used now on GIST, which is anothe cancer that is quite likely to have a C-kit mutation.

                    SUTENT:  SUTENT is used when the medicine Gleevec® (imatinib mesylate) did not stop the cancer from growing or when you cannot take Gleevec.

                    Tyrosine kinase inhibitors (TKI) are used for the treatment of various cancers. Case reports and clinical trials have reported abnormal thyroid function tests (TFT) after treatment with sunitinib, imatinib, sorafenib, dasatinib, and nilotinib. An increased requirement for levothyroxine was reported in thyroidectomized patients during TKI treatment.

                     

                    Good luck.

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