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Mucosal Melanoma treatments

Forums Mucosal Melanoma Community Mucosal Melanoma treatments

  • Post
    Angelica Camargo
    Participant

      Hello, 

       

      Hello, 

       

      My mom was diagnosed with Mucosal Melanoma March 2012. She already had surgery to remove the tumor (stage IV) and completed her Radiation treatment. She never felt sick and has had an amazing energy throughout all the past months. It is sacry to know that cancer can be so silent. To be honest, only reason we know she "had" (hopefully) cancer is because of the biopsy. Her scans came clean and we are so greatful and hopeful that she is truly clean. But of course we know that this melanoma cells are very sneaky and they can be small and hiding around the body. Our oncologyst 100% suggested "INTERFERON". We are not scare of the side effects but I would love to hear from people that has had or have this same type of cancer. It is so rare that it is so frustrating to hear from the Doctors "We just don't know"

       

      Greatfully, 

       

      Angelica (Gely's daughter)

      BTW: Bastyr Clinc (Naturopathic University) has helped us so much make my mom's body so strong and healthy. I 100% recomment to complement any treatments with Viatmins, supplements and an extremly healthy food routine. 

    Viewing 11 reply threads
    • Replies
        washoegal
        Participant

          I am glad you mom is feeling so well.  I haven't had mucosal melanoma so I cannot comment on that.  The use of interferon is a very controversial subject and it is really a personal choice.  The one thing I would caution you about is if you decide to take any tradition treatment make sure you oncologist know what supplements you mom is taking.  Some supplements interfere with certain treatments or may actually be deadly.

          Mary

          Stage 3

          washoegal
          Participant

            I am glad you mom is feeling so well.  I haven't had mucosal melanoma so I cannot comment on that.  The use of interferon is a very controversial subject and it is really a personal choice.  The one thing I would caution you about is if you decide to take any tradition treatment make sure you oncologist know what supplements you mom is taking.  Some supplements interfere with certain treatments or may actually be deadly.

            Mary

            Stage 3

            washoegal
            Participant

              I am glad you mom is feeling so well.  I haven't had mucosal melanoma so I cannot comment on that.  The use of interferon is a very controversial subject and it is really a personal choice.  The one thing I would caution you about is if you decide to take any tradition treatment make sure you oncologist know what supplements you mom is taking.  Some supplements interfere with certain treatments or may actually be deadly.

              Mary

              Stage 3

              Janner
              Participant

                Not sure where you are located, but in the states, Interferon is typically considered an adjuvant therapy for stage III, not stage IV.  There aren't a lot of choices for stage IV NED (no evidence of disease) so it is possible some might do Interferon at stage IV, but that's not the norm.  However, I would research the effectiveness of Interferon as it doesn't really have an improved overall survival rate.  It might not be the best choice for stage IV.  Has she been tested for the C-Kit mutation?  That can be found in mucosal melanoma and Gleevac is a good treatment option if that mutation is present.  Do your research so you are confident in the choice of treatment for your Mom.

                Best wishes,

                Janner

                Janner
                Participant

                  Not sure where you are located, but in the states, Interferon is typically considered an adjuvant therapy for stage III, not stage IV.  There aren't a lot of choices for stage IV NED (no evidence of disease) so it is possible some might do Interferon at stage IV, but that's not the norm.  However, I would research the effectiveness of Interferon as it doesn't really have an improved overall survival rate.  It might not be the best choice for stage IV.  Has she been tested for the C-Kit mutation?  That can be found in mucosal melanoma and Gleevac is a good treatment option if that mutation is present.  Do your research so you are confident in the choice of treatment for your Mom.

                  Best wishes,

                  Janner

                  Janner
                  Participant

                    Not sure where you are located, but in the states, Interferon is typically considered an adjuvant therapy for stage III, not stage IV.  There aren't a lot of choices for stage IV NED (no evidence of disease) so it is possible some might do Interferon at stage IV, but that's not the norm.  However, I would research the effectiveness of Interferon as it doesn't really have an improved overall survival rate.  It might not be the best choice for stage IV.  Has she been tested for the C-Kit mutation?  That can be found in mucosal melanoma and Gleevac is a good treatment option if that mutation is present.  Do your research so you are confident in the choice of treatment for your Mom.

                    Best wishes,

                    Janner

                      Angelica Camargo
                      Participant

                        Thank you Janner! She doesn't have the C-Kit or Braft mutation, which leaves us with little to do. Interferon only increases 5 to 10% survival but we feel that it is better than nothing. My big concern is that this is for skin melanoma and that it might not work at all for mucosal melanoma. What to do? Thank you for your reply.I truly appreciated

                        Angelica Camargo
                        Participant

                          Thank you Janner! She doesn't have the C-Kit or Braft mutation, which leaves us with little to do. Interferon only increases 5 to 10% survival but we feel that it is better than nothing. My big concern is that this is for skin melanoma and that it might not work at all for mucosal melanoma. What to do? Thank you for your reply.I truly appreciated

                          Angelica Camargo
                          Participant

                            Thank you Janner! She doesn't have the C-Kit or Braft mutation, which leaves us with little to do. Interferon only increases 5 to 10% survival but we feel that it is better than nothing. My big concern is that this is for skin melanoma and that it might not work at all for mucosal melanoma. What to do? Thank you for your reply.I truly appreciated

                          JerryfromFauq
                          Participant

                            Sounds like your Mom may be lucky.  Often mucosal melanoma is diagnosed very late and can be quite deadly because it is so late being diagnosed.  I was mis-diagnosed for 3 1/2 years.  The GP kept saying " Hemorrhoid, use Prep H."  This went on for 10 office visits between 2003  and mid 2006.  The general surgeon I was referred to played games and never even checked my lymph nodes (I had to find those by myself!).  I refused radiation due to the followon problems with the area they wanted to do extensive radiation on and the resistance of melanoma to radiation.  I also refused Interferon treatments (which was just as well since I was stage four and the local docs didn't knkow it yet.)  .Within 12 weeks of finding the groin lymph nodes an X-ray then CT showed innumerable and inoperative lung tumors.  I was given a life expectancy of less than 6 months in Feb 2007.  I immediately jumped to IL-2 treatments and was essentially stable for 20 months. 

                                I learned about an often relationship between mucosal melanoma and C-kit concertina and c-kit DNA mutations.  At that time there had been only one report published in one peer reviewed publication.  I have the C-kit onco-protein and talked my oncologist into investigating and trying me on Gleevec.  This started in March 2009 and I have now been essentially stable for over three more years to date.  (I am not NED (No CT/PET Evidence of Disease) but am still active.

                               Your Mothers tumor needs to be tested to determine if it has the C-kit Oncoprotein.  IF so, then a more in-depth DNA mutation test should be done.  If her tumor does not have the C-kit oncoprotein, then it should also be tested for other oncoproteins and mutations.  The BRAF oncoprotein and mutation is another common item in many types of melanoma's.  (Both have not been found in the same persons melanoma's yet.)   I will glad to talk with you either via email, MPIP BB  postings, Telephonically or on the MPIP Chat room.  You are welcome to read my Profile.   I can also help you get in contact with other mucosal men and ladies.

                                 

                            JerryfromFauq
                            Participant

                              Sounds like your Mom may be lucky.  Often mucosal melanoma is diagnosed very late and can be quite deadly because it is so late being diagnosed.  I was mis-diagnosed for 3 1/2 years.  The GP kept saying " Hemorrhoid, use Prep H."  This went on for 10 office visits between 2003  and mid 2006.  The general surgeon I was referred to played games and never even checked my lymph nodes (I had to find those by myself!).  I refused radiation due to the followon problems with the area they wanted to do extensive radiation on and the resistance of melanoma to radiation.  I also refused Interferon treatments (which was just as well since I was stage four and the local docs didn't knkow it yet.)  .Within 12 weeks of finding the groin lymph nodes an X-ray then CT showed innumerable and inoperative lung tumors.  I was given a life expectancy of less than 6 months in Feb 2007.  I immediately jumped to IL-2 treatments and was essentially stable for 20 months. 

                                  I learned about an often relationship between mucosal melanoma and C-kit concertina and c-kit DNA mutations.  At that time there had been only one report published in one peer reviewed publication.  I have the C-kit onco-protein and talked my oncologist into investigating and trying me on Gleevec.  This started in March 2009 and I have now been essentially stable for over three more years to date.  (I am not NED (No CT/PET Evidence of Disease) but am still active.

                                 Your Mothers tumor needs to be tested to determine if it has the C-kit Oncoprotein.  IF so, then a more in-depth DNA mutation test should be done.  If her tumor does not have the C-kit oncoprotein, then it should also be tested for other oncoproteins and mutations.  The BRAF oncoprotein and mutation is another common item in many types of melanoma's.  (Both have not been found in the same persons melanoma's yet.)   I will glad to talk with you either via email, MPIP BB  postings, Telephonically or on the MPIP Chat room.  You are welcome to read my Profile.   I can also help you get in contact with other mucosal men and ladies.

                                   

                              JerryfromFauq
                              Participant

                                Sounds like your Mom may be lucky.  Often mucosal melanoma is diagnosed very late and can be quite deadly because it is so late being diagnosed.  I was mis-diagnosed for 3 1/2 years.  The GP kept saying " Hemorrhoid, use Prep H."  This went on for 10 office visits between 2003  and mid 2006.  The general surgeon I was referred to played games and never even checked my lymph nodes (I had to find those by myself!).  I refused radiation due to the followon problems with the area they wanted to do extensive radiation on and the resistance of melanoma to radiation.  I also refused Interferon treatments (which was just as well since I was stage four and the local docs didn't knkow it yet.)  .Within 12 weeks of finding the groin lymph nodes an X-ray then CT showed innumerable and inoperative lung tumors.  I was given a life expectancy of less than 6 months in Feb 2007.  I immediately jumped to IL-2 treatments and was essentially stable for 20 months. 

                                    I learned about an often relationship between mucosal melanoma and C-kit concertina and c-kit DNA mutations.  At that time there had been only one report published in one peer reviewed publication.  I have the C-kit onco-protein and talked my oncologist into investigating and trying me on Gleevec.  This started in March 2009 and I have now been essentially stable for over three more years to date.  (I am not NED (No CT/PET Evidence of Disease) but am still active.

                                   Your Mothers tumor needs to be tested to determine if it has the C-kit Oncoprotein.  IF so, then a more in-depth DNA mutation test should be done.  If her tumor does not have the C-kit oncoprotein, then it should also be tested for other oncoproteins and mutations.  The BRAF oncoprotein and mutation is another common item in many types of melanoma's.  (Both have not been found in the same persons melanoma's yet.)   I will glad to talk with you either via email, MPIP BB  postings, Telephonically or on the MPIP Chat room.  You are welcome to read my Profile.   I can also help you get in contact with other mucosal men and ladies.

                                     

                                  Angelica Camargo
                                  Participant

                                    Thank you for your reply. Sadly she doesnt have the C-kit or Braft mutation so we can't take these two drugs. There is one called Ipi? which I think she could be candidate for is she had metastasis. Intraferon as I understand has little survival increases (5% to 10%) but we think that that is better than none. We also don't know if this treatment will be effective at all since it  is usually used for skin melanoma. So frustrating! Her scans came clear and even if I am so greatful and  happy I would like to learn more about new clinical trials she could partcipate on if she has a reocurrance. 

                                     

                                    So much luck to you! Your story is truly inspirational and makes me so happy to hear that you are stable. Yes, please feel free to connect me with other mucosal melanoma survivors! I will contact you soon!

                                    Angelica Camargo
                                    Participant

                                      Thank you for your reply. Sadly she doesnt have the C-kit or Braft mutation so we can't take these two drugs. There is one called Ipi? which I think she could be candidate for is she had metastasis. Intraferon as I understand has little survival increases (5% to 10%) but we think that that is better than none. We also don't know if this treatment will be effective at all since it  is usually used for skin melanoma. So frustrating! Her scans came clear and even if I am so greatful and  happy I would like to learn more about new clinical trials she could partcipate on if she has a reocurrance. 

                                       

                                      So much luck to you! Your story is truly inspirational and makes me so happy to hear that you are stable. Yes, please feel free to connect me with other mucosal melanoma survivors! I will contact you soon!

                                      Angelica Camargo
                                      Participant

                                        Thank you for your reply. Sadly she doesnt have the C-kit or Braft mutation so we can't take these two drugs. There is one called Ipi? which I think she could be candidate for is she had metastasis. Intraferon as I understand has little survival increases (5% to 10%) but we think that that is better than none. We also don't know if this treatment will be effective at all since it  is usually used for skin melanoma. So frustrating! Her scans came clear and even if I am so greatful and  happy I would like to learn more about new clinical trials she could partcipate on if she has a reocurrance. 

                                         

                                        So much luck to you! Your story is truly inspirational and makes me so happy to hear that you are stable. Yes, please feel free to connect me with other mucosal melanoma survivors! I will contact you soon!

                                        Janner
                                        Participant

                                          Please read the literature on Interferon again.  Last I read, it didn't increase survival at all.  It only increased the disease-free time by maybe a year (same amount of time on the drug), but overall survival numbers did not increase.  I honestly haven't looked at the data in a long time and I know there are multiple reports floating around out there.  There was a report showing people with ulcerated tumors might have better results but again, I am going on memory and not a recent reading.  I'm just suggesting a good scouring of the literature for Interferon and Stage IV might be appropriate. 

                                          The other drug is Ipilimumab or Yervoy.  I believe there are clinical trials out there for people who are NED but it is typically given for stage IV active disease.

                                          I might also suggest a second opinion at Seattle Cancer Care Alliance.  It might be worth getting an opinion from other experts when you are discussing treatment options.  They may have seen more mucosal patients there.  Here is a list of clinical trials offered at SCCA for melanoma:  http://www.seattlecca.org/clinical-trials/melanoma-list.cfm.  There is a trial on IPI vs. Interferon there, but often times you will find it hard to participate in clinical trials without active disease.

                                          Best wishes,

                                          Janner

                                          Janner
                                          Participant

                                            Please read the literature on Interferon again.  Last I read, it didn't increase survival at all.  It only increased the disease-free time by maybe a year (same amount of time on the drug), but overall survival numbers did not increase.  I honestly haven't looked at the data in a long time and I know there are multiple reports floating around out there.  There was a report showing people with ulcerated tumors might have better results but again, I am going on memory and not a recent reading.  I'm just suggesting a good scouring of the literature for Interferon and Stage IV might be appropriate. 

                                            The other drug is Ipilimumab or Yervoy.  I believe there are clinical trials out there for people who are NED but it is typically given for stage IV active disease.

                                            I might also suggest a second opinion at Seattle Cancer Care Alliance.  It might be worth getting an opinion from other experts when you are discussing treatment options.  They may have seen more mucosal patients there.  Here is a list of clinical trials offered at SCCA for melanoma:  http://www.seattlecca.org/clinical-trials/melanoma-list.cfm.  There is a trial on IPI vs. Interferon there, but often times you will find it hard to participate in clinical trials without active disease.

                                            Best wishes,

                                            Janner

                                            Janner
                                            Participant

                                              Please read the literature on Interferon again.  Last I read, it didn't increase survival at all.  It only increased the disease-free time by maybe a year (same amount of time on the drug), but overall survival numbers did not increase.  I honestly haven't looked at the data in a long time and I know there are multiple reports floating around out there.  There was a report showing people with ulcerated tumors might have better results but again, I am going on memory and not a recent reading.  I'm just suggesting a good scouring of the literature for Interferon and Stage IV might be appropriate. 

                                              The other drug is Ipilimumab or Yervoy.  I believe there are clinical trials out there for people who are NED but it is typically given for stage IV active disease.

                                              I might also suggest a second opinion at Seattle Cancer Care Alliance.  It might be worth getting an opinion from other experts when you are discussing treatment options.  They may have seen more mucosal patients there.  Here is a list of clinical trials offered at SCCA for melanoma:  http://www.seattlecca.org/clinical-trials/melanoma-list.cfm.  There is a trial on IPI vs. Interferon there, but often times you will find it hard to participate in clinical trials without active disease.

                                              Best wishes,

                                              Janner

                                              JerryfromFauq
                                              Participant

                                                One more irtem I wonder about is the staging.   I was chatting with a lady last night whose Aunt had a leg tumor and she understood that her melanoma was at stage IV.  The lady has not yet had either the WLE, SLNB Tracing, nor SLNB removal done.  Without further knowledge beyond pathology of the primary tumor, the stage of one's melanoma cannot be diagnosed to be beyond stage I  or II.  Clark's Level is how thick the initial tumor is.  People often confuse stage and Clark's Level based on what they understand the doctors to have said.

                                                 

                                                Staging Chart info:

                                                http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/dermatology/cutaneous-malignant-melanoma/#s0110

                                                JerryfromFauq
                                                Participant

                                                  One more irtem I wonder about is the staging.   I was chatting with a lady last night whose Aunt had a leg tumor and she understood that her melanoma was at stage IV.  The lady has not yet had either the WLE, SLNB Tracing, nor SLNB removal done.  Without further knowledge beyond pathology of the primary tumor, the stage of one's melanoma cannot be diagnosed to be beyond stage I  or II.  Clark's Level is how thick the initial tumor is.  People often confuse stage and Clark's Level based on what they understand the doctors to have said.

                                                   

                                                  Staging Chart info:

                                                  http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/dermatology/cutaneous-malignant-melanoma/#s0110

                                                  JerryfromFauq
                                                  Participant

                                                    One more irtem I wonder about is the staging.   I was chatting with a lady last night whose Aunt had a leg tumor and she understood that her melanoma was at stage IV.  The lady has not yet had either the WLE, SLNB Tracing, nor SLNB removal done.  Without further knowledge beyond pathology of the primary tumor, the stage of one's melanoma cannot be diagnosed to be beyond stage I  or II.  Clark's Level is how thick the initial tumor is.  People often confuse stage and Clark's Level based on what they understand the doctors to have said.

                                                     

                                                    Staging Chart info:

                                                    http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/dermatology/cutaneous-malignant-melanoma/#s0110

                                                  DebDiCarlo
                                                  Participant

                                                    I'm happy to hear that your mother is NED.  Many of the replies you have recieved are probably more technically correct and data specific, but I couldn't let this post go by without suggesting that sometimes you have to go with your gut.  I was diagnosed in 2005 with Mucosal Melanoma.  Much like Jerry, I was told it was a hemmorhoid for nearly a year by my OB/GYN.  When it began bleeding I sought other opinions and was rushed into surgery, diagnosed with Mucosal Melanoma and began treatment.  I did not have radiation, as my oncologist wanted to keep that option "in our back pocket" in case it resurfaced.  Instead, he recommended Interferon.  I withstood the high dose treatment for 4 weeks, and completed a full year of interferon in August 2006.  It is now June 2012 and I am still NED.  While many of the statistics now state that INF does not necessarily contribute to longer life expectancy and every individual is different, I do not regret "doing everything possible" to increase my chance to live a longer life.  This is not to say that it is because of the interferon that I am still here today NED, I recognize that there are likely a lot of contributing factors including age, overall health, etc., but nonetheless, I am still here today.  Keep in mind, Interferon is a gruelling treatment, I was very lucky that I was still able to work, travel and be a Mom to my son.  Keep in mind I was 42 at the time, and I believe my age played a significant role.  I do, however, have rheumatoid arthritis and it was exacerbated signficantly with the treatment. Had that not been the case, I would have perhaps fared even better.  Part of why I believe age plays a significant role is that I had an Interferon friend who was diagnosed at nearly the same time who was in her 60's, completed the interferon and passed away 18 months ago.  Her MM came back within 30 days of ending the treatment. Best of luck in your decision. 

                                                    DebDiCarlo
                                                    Participant

                                                      I'm happy to hear that your mother is NED.  Many of the replies you have recieved are probably more technically correct and data specific, but I couldn't let this post go by without suggesting that sometimes you have to go with your gut.  I was diagnosed in 2005 with Mucosal Melanoma.  Much like Jerry, I was told it was a hemmorhoid for nearly a year by my OB/GYN.  When it began bleeding I sought other opinions and was rushed into surgery, diagnosed with Mucosal Melanoma and began treatment.  I did not have radiation, as my oncologist wanted to keep that option "in our back pocket" in case it resurfaced.  Instead, he recommended Interferon.  I withstood the high dose treatment for 4 weeks, and completed a full year of interferon in August 2006.  It is now June 2012 and I am still NED.  While many of the statistics now state that INF does not necessarily contribute to longer life expectancy and every individual is different, I do not regret "doing everything possible" to increase my chance to live a longer life.  This is not to say that it is because of the interferon that I am still here today NED, I recognize that there are likely a lot of contributing factors including age, overall health, etc., but nonetheless, I am still here today.  Keep in mind, Interferon is a gruelling treatment, I was very lucky that I was still able to work, travel and be a Mom to my son.  Keep in mind I was 42 at the time, and I believe my age played a significant role.  I do, however, have rheumatoid arthritis and it was exacerbated signficantly with the treatment. Had that not been the case, I would have perhaps fared even better.  Part of why I believe age plays a significant role is that I had an Interferon friend who was diagnosed at nearly the same time who was in her 60's, completed the interferon and passed away 18 months ago.  Her MM came back within 30 days of ending the treatment. Best of luck in your decision. 

                                                      DebDiCarlo
                                                      Participant

                                                        I'm happy to hear that your mother is NED.  Many of the replies you have recieved are probably more technically correct and data specific, but I couldn't let this post go by without suggesting that sometimes you have to go with your gut.  I was diagnosed in 2005 with Mucosal Melanoma.  Much like Jerry, I was told it was a hemmorhoid for nearly a year by my OB/GYN.  When it began bleeding I sought other opinions and was rushed into surgery, diagnosed with Mucosal Melanoma and began treatment.  I did not have radiation, as my oncologist wanted to keep that option "in our back pocket" in case it resurfaced.  Instead, he recommended Interferon.  I withstood the high dose treatment for 4 weeks, and completed a full year of interferon in August 2006.  It is now June 2012 and I am still NED.  While many of the statistics now state that INF does not necessarily contribute to longer life expectancy and every individual is different, I do not regret "doing everything possible" to increase my chance to live a longer life.  This is not to say that it is because of the interferon that I am still here today NED, I recognize that there are likely a lot of contributing factors including age, overall health, etc., but nonetheless, I am still here today.  Keep in mind, Interferon is a gruelling treatment, I was very lucky that I was still able to work, travel and be a Mom to my son.  Keep in mind I was 42 at the time, and I believe my age played a significant role.  I do, however, have rheumatoid arthritis and it was exacerbated signficantly with the treatment. Had that not been the case, I would have perhaps fared even better.  Part of why I believe age plays a significant role is that I had an Interferon friend who was diagnosed at nearly the same time who was in her 60's, completed the interferon and passed away 18 months ago.  Her MM came back within 30 days of ending the treatment. Best of luck in your decision. 

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