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Mucosal Melanoma recurrence

Forums Mucosal Melanoma Community Mucosal Melanoma recurrence

  • Post
    Muru
    Participant

      Hi All,

       

      Hi All,

       

      I had mucosal melanoma in Tongue in 2007 and my 2/3 of the tongue has been removed. I was under constant observation. I was cancer free for 5.5 years. Now melanoma has recurred again in my larynx area. As per PET CT it has not spread to any other part of the body. Now my entire Voice Box has been removed on Feb 6th 2013. I got discharged from the hospital on Feb 24th and I am still in recovery mode.

      No Molecular studies like (BRAF mutation) are done so far. I am trying to get this done in a couple of weeks. Meanwhile how do I make sure that this won't come again. Please share your views/Ideas.

      Do We have any good drugs available to fight against Melanoma.

       

      Thanks,

      Muru

      India 

    Viewing 5 reply threads
    • Replies
        jyc
        Participant

          Have you looked into testing the cancer tissue for the C-kit mutation?  My father was diagnosed with mucosal too in 2007 and was treated with surgery, radiation and chemo.  He did have the C-kit mutation and the chemo was targeted to that mutation.  He's been NED so far.  I hope this helps.

            Muru
            Participant

              Hi,

              It is good to know that your father is NED so far from 2007.

              Can you provide following more information :

              1. In which part of the body, Your father had melanoma. What was the melanoma Stage.

              2. Radiation and Chemo is not effective for melanoma, as per the doctor's information. Was it effective for your father?

              3. Can you please provide the chemo(medicineName) targeted for C-KIT mutation.

              4. Any Special Diet you are following for your father.

              5. Who was the consulatant for your father and In which Hospital he does the followup. 

               

              Thanks,

              Muru

              Muru
              Participant

                Hi,

                It is good to know that your father is NED so far from 2007.

                Can you provide following more information :

                1. In which part of the body, Your father had melanoma. What was the melanoma Stage.

                2. Radiation and Chemo is not effective for melanoma, as per the doctor's information. Was it effective for your father?

                3. Can you please provide the chemo(medicineName) targeted for C-KIT mutation.

                4. Any Special Diet you are following for your father.

                5. Who was the consulatant for your father and In which Hospital he does the followup. 

                 

                Thanks,

                Muru

                jyc
                Participant

                  Hi Muru, ironically since my response we've learned that my father's melanoma may have also recurred.  Just heard the news yesterday.  But he was NED since 2007 till now.  He actually just had his yearly check up in January and was declalred NED.  None of the diagnostic scans (PET and MRI) showed tumor activity.  A biopsy by his ENT doctor who was treating him for a nose bleed reported melanoma and he was quickly referred back to MDAnderson. We're actually pursuing treatment starting today at MDAnderson Cancer Center in Houston where he had treatment from the beginning.

                  1.  He had melanoma in the nasal cavity with micromet involvement in 1 lymphnode.  He was staged 3 (don't remember a or b exactly)

                  2.  True, it is said that radiation and chemo is not so effective for melanoma but it was done as standard treatment.  The radiation was said to be a more aggressive and longer course of 4 treatments per week for 6weeks.  The chemo was a bit more unique in that it was targeted to the c-kit mutation.  In addition to radiation and chemo, he did have some radical nasal surgery in order to remove tissue to get clear margins.

                  3.  Back in 2007, he did not have organ involvment but the oncologist chose to take an aggressive approach and use the chemo hopefully as a preventative measure.  He was prescribed 2 chemo medications which were in pill form.  The first was Temodar which acted to hopefully prevent brain metastasis and the second was Nexavar which is the drug used to target the c-kit mutation.

                  4.  No special diets.

                  5.  He is being treated at MDAnderson Cancer Center in Houston, TX USA.  He has 2 specialists that manages his case : Dr. Hanna (Head and Neck) and Dr. Wen Jen Hwu (Melanoma Oncologist)

                  jyc
                  Participant

                    Hi Muru, ironically since my response we've learned that my father's melanoma may have also recurred.  Just heard the news yesterday.  But he was NED since 2007 till now.  He actually just had his yearly check up in January and was declalred NED.  None of the diagnostic scans (PET and MRI) showed tumor activity.  A biopsy by his ENT doctor who was treating him for a nose bleed reported melanoma and he was quickly referred back to MDAnderson. We're actually pursuing treatment starting today at MDAnderson Cancer Center in Houston where he had treatment from the beginning.

                    1.  He had melanoma in the nasal cavity with micromet involvement in 1 lymphnode.  He was staged 3 (don't remember a or b exactly)

                    2.  True, it is said that radiation and chemo is not so effective for melanoma but it was done as standard treatment.  The radiation was said to be a more aggressive and longer course of 4 treatments per week for 6weeks.  The chemo was a bit more unique in that it was targeted to the c-kit mutation.  In addition to radiation and chemo, he did have some radical nasal surgery in order to remove tissue to get clear margins.

                    3.  Back in 2007, he did not have organ involvment but the oncologist chose to take an aggressive approach and use the chemo hopefully as a preventative measure.  He was prescribed 2 chemo medications which were in pill form.  The first was Temodar which acted to hopefully prevent brain metastasis and the second was Nexavar which is the drug used to target the c-kit mutation.

                    4.  No special diets.

                    5.  He is being treated at MDAnderson Cancer Center in Houston, TX USA.  He has 2 specialists that manages his case : Dr. Hanna (Head and Neck) and Dr. Wen Jen Hwu (Melanoma Oncologist)

                    jyc
                    Participant

                      Hi Muru, ironically since my response we've learned that my father's melanoma may have also recurred.  Just heard the news yesterday.  But he was NED since 2007 till now.  He actually just had his yearly check up in January and was declalred NED.  None of the diagnostic scans (PET and MRI) showed tumor activity.  A biopsy by his ENT doctor who was treating him for a nose bleed reported melanoma and he was quickly referred back to MDAnderson. We're actually pursuing treatment starting today at MDAnderson Cancer Center in Houston where he had treatment from the beginning.

                      1.  He had melanoma in the nasal cavity with micromet involvement in 1 lymphnode.  He was staged 3 (don't remember a or b exactly)

                      2.  True, it is said that radiation and chemo is not so effective for melanoma but it was done as standard treatment.  The radiation was said to be a more aggressive and longer course of 4 treatments per week for 6weeks.  The chemo was a bit more unique in that it was targeted to the c-kit mutation.  In addition to radiation and chemo, he did have some radical nasal surgery in order to remove tissue to get clear margins.

                      3.  Back in 2007, he did not have organ involvment but the oncologist chose to take an aggressive approach and use the chemo hopefully as a preventative measure.  He was prescribed 2 chemo medications which were in pill form.  The first was Temodar which acted to hopefully prevent brain metastasis and the second was Nexavar which is the drug used to target the c-kit mutation.

                      4.  No special diets.

                      5.  He is being treated at MDAnderson Cancer Center in Houston, TX USA.  He has 2 specialists that manages his case : Dr. Hanna (Head and Neck) and Dr. Wen Jen Hwu (Melanoma Oncologist)

                      Muru
                      Participant

                        Hi,

                        It is good to know that your father is NED so far from 2007.

                        Can you provide following more information :

                        1. In which part of the body, Your father had melanoma. What was the melanoma Stage.

                        2. Radiation and Chemo is not effective for melanoma, as per the doctor's information. Was it effective for your father?

                        3. Can you please provide the chemo(medicineName) targeted for C-KIT mutation.

                        4. Any Special Diet you are following for your father.

                        5. Who was the consulatant for your father and In which Hospital he does the followup. 

                         

                        Thanks,

                        Muru

                      jyc
                      Participant

                        Have you looked into testing the cancer tissue for the C-kit mutation?  My father was diagnosed with mucosal too in 2007 and was treated with surgery, radiation and chemo.  He did have the C-kit mutation and the chemo was targeted to that mutation.  He's been NED so far.  I hope this helps.

                        jyc
                        Participant

                          Have you looked into testing the cancer tissue for the C-kit mutation?  My father was diagnosed with mucosal too in 2007 and was treated with surgery, radiation and chemo.  He did have the C-kit mutation and the chemo was targeted to that mutation.  He's been NED so far.  I hope this helps.

                          Tim–MRF
                          Guest

                            Muru:

                            Mucosal melanoma is not driven by the BRAF mutation, so that is not a likely treatment approach for your.  As has been mentioned, the c-KIT mutation is somewhat common in mucosal melanoma and you should definitely be tested for that, if you can.  Drugs that block the c-KIT mutation are available.

                            Due to the rarity of mucosal melanoma, no good large trials have been done to evaluate different treatment approaches.  I believe that the places who work with mucosal melanoma prefer the following:  test for c-KIT and, if positive, treat with a c-KIT inhibitor.  If no c-KIT mutation exists or if the patient progresses on a c-KIT inhibitor, then switch to an immunotherapy.  This may include IL-2,  ipilimumab or enrolling in a clinical trial of an anit PD-1 drug.  Chemotherapy is used sometimes, based on data from cutaneous melanoma.  In both cutaneous and mucosal melanoma chemotheraphy has limited benefit.

                            If possible, try to see a doctor who is familiar with this rare form of melanoma and is aware of the treatment options and the relevant clinical trials.

                            Tim–MRF

                              Muru
                              Participant

                                HI Tim,

                                 

                                Thanks for your reply.

                                I am working on to get the mutation study done as soon as possible.

                                I will come back to you soon.

                                Thanks,

                                Murugesan

                                Muru
                                Participant

                                  HI Tim,

                                   

                                  Thanks for your reply.

                                  I am working on to get the mutation study done as soon as possible.

                                  I will come back to you soon.

                                  Thanks,

                                  Murugesan

                                  Muru
                                  Participant

                                    Hi All,

                                    My Consultant suggested to do ImmunoHistoChemistry for C-KIT and it had come as positive in my specimen. He said there is no need to do C-KIT mutation and we could take the C-KIT inhibitor Imatinib oral tablet. I am taking this oral tablet for last 10 days and hope to get some good results. Meanwhile what are all the side effects of this tablet and how we could manage either by having a specific diet or in some other way.

                                     

                                    Thanks,

                                    Murugesan

                                    Muru
                                    Participant

                                      Hi All,

                                      Another bad news for me. Melanoma has come back to me in Right Side Level II and Level IVLymphnodes within 3 months of my 2nd Surgery. Now I need to undergo 3rd Surgery to go for the Neck Dissection of Lymphnodes. This means I am moving to Stage III and have high possibility of getting into Stage IV.Anyway Now  I am going for a surgery. But I need your advice on how Can I come out of this Melanoma successfully as I have two young kids. Whether Inteferon would help or do we have any other better medicines or mechanisms to come out of this Successfully.

                                      Thanks in advance for your help.

                                      Thanks,

                                      Muru

                                      India

                                      Muru
                                      Participant

                                        Hi All,

                                        Another bad news for me. Melanoma has come back to me in Right Side Level II and Level IVLymphnodes within 3 months of my 2nd Surgery. Now I need to undergo 3rd Surgery to go for the Neck Dissection of Lymphnodes. This means I am moving to Stage III and have high possibility of getting into Stage IV.Anyway Now  I am going for a surgery. But I need your advice on how Can I come out of this Melanoma successfully as I have two young kids. Whether Inteferon would help or do we have any other better medicines or mechanisms to come out of this Successfully.

                                        Thanks in advance for your help.

                                        Thanks,

                                        Muru

                                        India

                                        Muru
                                        Participant

                                          Hi All,

                                          Another bad news for me. Melanoma has come back to me in Right Side Level II and Level IVLymphnodes within 3 months of my 2nd Surgery. Now I need to undergo 3rd Surgery to go for the Neck Dissection of Lymphnodes. This means I am moving to Stage III and have high possibility of getting into Stage IV.Anyway Now  I am going for a surgery. But I need your advice on how Can I come out of this Melanoma successfully as I have two young kids. Whether Inteferon would help or do we have any other better medicines or mechanisms to come out of this Successfully.

                                          Thanks in advance for your help.

                                          Thanks,

                                          Muru

                                          India

                                          Muru
                                          Participant

                                            Hi All,

                                            My Consultant suggested to do ImmunoHistoChemistry for C-KIT and it had come as positive in my specimen. He said there is no need to do C-KIT mutation and we could take the C-KIT inhibitor Imatinib oral tablet. I am taking this oral tablet for last 10 days and hope to get some good results. Meanwhile what are all the side effects of this tablet and how we could manage either by having a specific diet or in some other way.

                                             

                                            Thanks,

                                            Murugesan

                                            Muru
                                            Participant

                                              Hi All,

                                              My Consultant suggested to do ImmunoHistoChemistry for C-KIT and it had come as positive in my specimen. He said there is no need to do C-KIT mutation and we could take the C-KIT inhibitor Imatinib oral tablet. I am taking this oral tablet for last 10 days and hope to get some good results. Meanwhile what are all the side effects of this tablet and how we could manage either by having a specific diet or in some other way.

                                               

                                              Thanks,

                                              Murugesan

                                              Muru
                                              Participant

                                                HI Tim,

                                                 

                                                Thanks for your reply.

                                                I am working on to get the mutation study done as soon as possible.

                                                I will come back to you soon.

                                                Thanks,

                                                Murugesan

                                              Tim–MRF
                                              Guest

                                                Muru:

                                                Mucosal melanoma is not driven by the BRAF mutation, so that is not a likely treatment approach for your.  As has been mentioned, the c-KIT mutation is somewhat common in mucosal melanoma and you should definitely be tested for that, if you can.  Drugs that block the c-KIT mutation are available.

                                                Due to the rarity of mucosal melanoma, no good large trials have been done to evaluate different treatment approaches.  I believe that the places who work with mucosal melanoma prefer the following:  test for c-KIT and, if positive, treat with a c-KIT inhibitor.  If no c-KIT mutation exists or if the patient progresses on a c-KIT inhibitor, then switch to an immunotherapy.  This may include IL-2,  ipilimumab or enrolling in a clinical trial of an anit PD-1 drug.  Chemotherapy is used sometimes, based on data from cutaneous melanoma.  In both cutaneous and mucosal melanoma chemotheraphy has limited benefit.

                                                If possible, try to see a doctor who is familiar with this rare form of melanoma and is aware of the treatment options and the relevant clinical trials.

                                                Tim–MRF

                                                Tim–MRF
                                                Guest

                                                  Muru:

                                                  Mucosal melanoma is not driven by the BRAF mutation, so that is not a likely treatment approach for your.  As has been mentioned, the c-KIT mutation is somewhat common in mucosal melanoma and you should definitely be tested for that, if you can.  Drugs that block the c-KIT mutation are available.

                                                  Due to the rarity of mucosal melanoma, no good large trials have been done to evaluate different treatment approaches.  I believe that the places who work with mucosal melanoma prefer the following:  test for c-KIT and, if positive, treat with a c-KIT inhibitor.  If no c-KIT mutation exists or if the patient progresses on a c-KIT inhibitor, then switch to an immunotherapy.  This may include IL-2,  ipilimumab or enrolling in a clinical trial of an anit PD-1 drug.  Chemotherapy is used sometimes, based on data from cutaneous melanoma.  In both cutaneous and mucosal melanoma chemotheraphy has limited benefit.

                                                  If possible, try to see a doctor who is familiar with this rare form of melanoma and is aware of the treatment options and the relevant clinical trials.

                                                  Tim–MRF

                                              Viewing 5 reply threads
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