Mucosal Melanoma treatments

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

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

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

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

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

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

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.

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.

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.

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. 

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. 

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.