ANAL MELANOMA Mom diagnosed please help and advise of any experienced doctors and clinic.

My husband has been battling anal melanoma for the past 28 months, and we have been treated at Sloan Kettering, Dana Farber, and MDAnderson. Feel free to email me directly for more details, pvjssim@aol.com, it’s easier to communicate that way. Several questions need to be answered, for instance, has she had her initial surgery, was the tumor removed, did they get clear margins, has she had a Cat scan, has the tumor been tested for C-kit mutation? Please just take things one day at a time, and realize that gathering information is so important in the early stages, than you make more informed decisions. God Bless, Valerie (Phil’s wife)

My husband has been battling anal melanoma for the past 28 months, and we have been treated at Sloan Kettering, Dana Farber, and MDAnderson. Feel free to email me directly for more details, pvjssim@aol.com, it’s easier to communicate that way. Several questions need to be answered, for instance, has she had her initial surgery, was the tumor removed, did they get clear margins, has she had a Cat scan, has the tumor been tested for C-kit mutation? Please just take things one day at a time, and realize that gathering information is so important in the early stages, than you make more informed decisions. God Bless, Valerie (Phil’s wife)

My husband has been battling anal melanoma for the past 28 months, and we have been treated at Sloan Kettering, Dana Farber, and MDAnderson. Feel free to email me directly for more details, pvjssim@aol.com, it’s easier to communicate that way. Several questions need to be answered, for instance, has she had her initial surgery, was the tumor removed, did they get clear margins, has she had a Cat scan, has the tumor been tested for C-kit mutation? Please just take things one day at a time, and realize that gathering information is so important in the early stages, than you make more informed decisions. God Bless, Valerie (Phil’s wife)

Please provide the info Valarie requested.  In addition has your Mother been staged?  Have the groin lymph nodes been checked for metastases?  The PET scan should provided info ass to the amount of spread, if any.  You are welcome to read my Profile here.

    I was mis-diagnosed of the rare anal melanoma from 2002 until May 2006 (at age of 62) as having a hemorrhoid (just keep using Prep H – BAD Advice!)  Went to stage Iv by Feb 2007.  My first treatment after the operation and subsequent metastisis was to rush to get IL-2 from an extremely experienced IL-2 Melanoma Specialist at the University of Virginia (UVA).  While IL-2 is rough, it has the best overall record (all be  it a low total cure rate) to date against the broad spectrum of Melanoma.  I recommend taking it as early as possible at stage IV.  (Earlier if in a location where it an be authorized.)  It held me stable for 20 months.  I understand that it is not likely to be available in Canada.  During the time the IL-2 was working for me I learned about a one person peer reviewed write-up about C-Kit anal melanoma using a targeted c-kit chemo that is not approved for melanoma treatment by the FDA in the USA, but approved for several other cancers.  I had been told I had innumerable lung tumors in 2007 and innumerable new (additional) lung tumors develop in 2009.  Apparently I must have the c-kit DNA mutation on Exon 11 as well a having the c-kit oncoprotein on my melanoma cell surfaces.  The Gleevec has held my tumors steady for three years since I started on it in March 2009. (Gleevec also has fairly low side effects.) At least 3 other c-kit drugs are being teted against c-kit melanoma.

   I will be glad to talk with you via either the MPIP.org chat room, emails (tjellis@erols.com) or if you want to call me telephonically (phone # can be sent via email.

    I have known of several Canadians in the past that were told that nothing could be done about anal melanoma except operation at the early stages. (ie, no mid or late stage treatment available and I was told that they were sent home to die.)  My Oncologist did not take that view and has worked with me to do the treatments I requested and I am 9 years past my first complaint to my General Practioner and 5 years past being told to expect to be dead within 6 months by a general Oncologist.  Didn't even have to have a colostomy.  I found my own spread to the groin lymph nodes after the general local surgeon said I was all clear.  He never even asked about any follow up scans.  Glad I got to UVA.

Hope is not automatically gone.  Yes this is serious andd any melanoma requires vigilanace, but if paranoia sets  in, then the bad guy has already won.  Learn and fight.

Another place that I have since learned is working on Mucousal and c-kit melanoma's is

http://www.vicc.org/cancers/skin.php

Good luck and keep us informed.  Contact us anytime.  The MPIP board supported by the MRF is a great group of caring people from all over the world.

Please provide the info Valarie requested.  In addition has your Mother been staged?  Have the groin lymph nodes been checked for metastases?  The PET scan should provided info ass to the amount of spread, if any.  You are welcome to read my Profile here.

    I was mis-diagnosed of the rare anal melanoma from 2002 until May 2006 (at age of 62) as having a hemorrhoid (just keep using Prep H – BAD Advice!)  Went to stage Iv by Feb 2007.  My first treatment after the operation and subsequent metastisis was to rush to get IL-2 from an extremely experienced IL-2 Melanoma Specialist at the University of Virginia (UVA).  While IL-2 is rough, it has the best overall record (all be  it a low total cure rate) to date against the broad spectrum of Melanoma.  I recommend taking it as early as possible at stage IV.  (Earlier if in a location where it an be authorized.)  It held me stable for 20 months.  I understand that it is not likely to be available in Canada.  During the time the IL-2 was working for me I learned about a one person peer reviewed write-up about C-Kit anal melanoma using a targeted c-kit chemo that is not approved for melanoma treatment by the FDA in the USA, but approved for several other cancers.  I had been told I had innumerable lung tumors in 2007 and innumerable new (additional) lung tumors develop in 2009.  Apparently I must have the c-kit DNA mutation on Exon 11 as well a having the c-kit oncoprotein on my melanoma cell surfaces.  The Gleevec has held my tumors steady for three years since I started on it in March 2009. (Gleevec also has fairly low side effects.) At least 3 other c-kit drugs are being teted against c-kit melanoma.

   I will be glad to talk with you via either the MPIP.org chat room, emails (tjellis@erols.com) or if you want to call me telephonically (phone # can be sent via email.

    I have known of several Canadians in the past that were told that nothing could be done about anal melanoma except operation at the early stages. (ie, no mid or late stage treatment available and I was told that they were sent home to die.)  My Oncologist did not take that view and has worked with me to do the treatments I requested and I am 9 years past my first complaint to my General Practioner and 5 years past being told to expect to be dead within 6 months by a general Oncologist.  Didn't even have to have a colostomy.  I found my own spread to the groin lymph nodes after the general local surgeon said I was all clear.  He never even asked about any follow up scans.  Glad I got to UVA.

Hope is not automatically gone.  Yes this is serious andd any melanoma requires vigilanace, but if paranoia sets  in, then the bad guy has already won.  Learn and fight.

Another place that I have since learned is working on Mucousal and c-kit melanoma's is

http://www.vicc.org/cancers/skin.php

Good luck and keep us informed.  Contact us anytime.  The MPIP board supported by the MRF is a great group of caring people from all over the world.

Please provide the info Valarie requested.  In addition has your Mother been staged?  Have the groin lymph nodes been checked for metastases?  The PET scan should provided info ass to the amount of spread, if any.  You are welcome to read my Profile here.

    I was mis-diagnosed of the rare anal melanoma from 2002 until May 2006 (at age of 62) as having a hemorrhoid (just keep using Prep H – BAD Advice!)  Went to stage Iv by Feb 2007.  My first treatment after the operation and subsequent metastisis was to rush to get IL-2 from an extremely experienced IL-2 Melanoma Specialist at the University of Virginia (UVA).  While IL-2 is rough, it has the best overall record (all be  it a low total cure rate) to date against the broad spectrum of Melanoma.  I recommend taking it as early as possible at stage IV.  (Earlier if in a location where it an be authorized.)  It held me stable for 20 months.  I understand that it is not likely to be available in Canada.  During the time the IL-2 was working for me I learned about a one person peer reviewed write-up about C-Kit anal melanoma using a targeted c-kit chemo that is not approved for melanoma treatment by the FDA in the USA, but approved for several other cancers.  I had been told I had innumerable lung tumors in 2007 and innumerable new (additional) lung tumors develop in 2009.  Apparently I must have the c-kit DNA mutation on Exon 11 as well a having the c-kit oncoprotein on my melanoma cell surfaces.  The Gleevec has held my tumors steady for three years since I started on it in March 2009. (Gleevec also has fairly low side effects.) At least 3 other c-kit drugs are being teted against c-kit melanoma.

   I will be glad to talk with you via either the MPIP.org chat room, emails (tjellis@erols.com) or if you want to call me telephonically (phone # can be sent via email.

    I have known of several Canadians in the past that were told that nothing could be done about anal melanoma except operation at the early stages. (ie, no mid or late stage treatment available and I was told that they were sent home to die.)  My Oncologist did not take that view and has worked with me to do the treatments I requested and I am 9 years past my first complaint to my General Practioner and 5 years past being told to expect to be dead within 6 months by a general Oncologist.  Didn't even have to have a colostomy.  I found my own spread to the groin lymph nodes after the general local surgeon said I was all clear.  He never even asked about any follow up scans.  Glad I got to UVA.

Hope is not automatically gone.  Yes this is serious andd any melanoma requires vigilanace, but if paranoia sets  in, then the bad guy has already won.  Learn and fight.

Another place that I have since learned is working on Mucousal and c-kit melanoma's is

http://www.vicc.org/cancers/skin.php

Good luck and keep us informed.  Contact us anytime.  The MPIP board supported by the MRF is a great group of caring people from all over the world.