Stage IIIC: Metastatic Malginant Melanoma, rare in India

I cant answer all your questions, but given the countries you list for treatment, I'd choose Germany.  Melanoma isn't common in the Asian population either and many of the countries you listed miight not offer much more than you have access to now.  Germany puts a lot of money into health care and research.  If i had to get treatment outside the US, I'd put Germany at the top of my list.  Alternately Australia because they have the highest incidence of melanoma worldwide.

Since clinical trials are sponsored by private companies, you would have to contact them directly to see if they would sponsor your care.  In the US, only the drug is typically paid for in clinical trials and scans, tests and other routine stuff is paid for by insurance. Most trials require periodic scans, blood tests, etc. and those costs would require you to pay for them or make some sort of arrangements.

I cant answer all your questions, but given the countries you list for treatment, I'd choose Germany.  Melanoma isn't common in the Asian population either and many of the countries you listed miight not offer much more than you have access to now.  Germany puts a lot of money into health care and research.  If i had to get treatment outside the US, I'd put Germany at the top of my list.  Alternately Australia because they have the highest incidence of melanoma worldwide.

Since clinical trials are sponsored by private companies, you would have to contact them directly to see if they would sponsor your care.  In the US, only the drug is typically paid for in clinical trials and scans, tests and other routine stuff is paid for by insurance. Most trials require periodic scans, blood tests, etc. and those costs would require you to pay for them or make some sort of arrangements.

I cant answer all your questions, but given the countries you list for treatment, I'd choose Germany.  Melanoma isn't common in the Asian population either and many of the countries you listed miight not offer much more than you have access to now.  Germany puts a lot of money into health care and research.  If i had to get treatment outside the US, I'd put Germany at the top of my list.  Alternately Australia because they have the highest incidence of melanoma worldwide.

Since clinical trials are sponsored by private companies, you would have to contact them directly to see if they would sponsor your care.  In the US, only the drug is typically paid for in clinical trials and scans, tests and other routine stuff is paid for by insurance. Most trials require periodic scans, blood tests, etc. and those costs would require you to pay for them or make some sort of arrangements.

I cannot answer your question regarding where and under what payment circumstances you would be accepted for treatment or trials.  I suspect they will vary a great deal and you will have to contact each location you are interested in.  However, I have some information that may be helpful to you in understanding BRAF status, BRAF inhibitors and treatment when you are categorized as NED (no evidence of disease).

Here is some general information about BRAF…what it means, how treatments work:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html

As far as adjuvant therapy….  Many researchers in melanoma feel that adjuvant treatment, that is…treating folks when they have no evidence of disease…is very promising.  Many believe that the best way of preventing melanoma from ever coming back is to hit it when it's low…literally and figuratively!  Many studies have shown that when treating patients with active disease, the patients who do best are those who have the lowest tumor burden at the start.  However, some patients don't see the sense in it.  They figure they have some portion of odds in their favor that now that the melanoma has been removed…it will not return….if not forever, then at least for a while and they prefer to plan to treat it then…if they must.  They also consider that every treatment has some risk of side effects (some more than others) and they don't want to deal with those if they don't "have" to.  It is a very personal choice and one in which only the patient can decide what feels best for them.  That said, until recently, there weren't many adjuvant treatment options available…interferon being about it.  Now, there are many…some with more promise than others.  NED trials with Nivolumab (anti-PD1), Ipilimumab (Yervoy) and the BRAF inhibitors are ongoing.  The other caveat is that the results of these relatively new trials are not in yet.   Absolute proof of how effective these treatments will be is not available yet.  On a personal note:   I went 7 years with just having melanoma surgically removed.  But, then it started popping up in lung, brain, etc and while I had those tumors radiated or sugically removed, I decided to do something more. That was 2010 and I was lucky to enroll at the very start of an NED Nivo trial.  I completed the 2 1/2 year dosing schedule and now, 17 months since my last dose, I remain NED.  Many of my cohort are doing equally well.

This is a talk in which two well respected researchers, Ribas and Weber, discuss an ipi NED trial:  (scroll down to "ipi as adjuvant" heading)  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/pretty-darn-impressivea-chat-between.html

This is a list of NED/adjuvant trials from the ClinicalTrials.gov website in September.  You can do your own search using the search bubble on their home page.  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/studies-listed-as-adjuvants-for.html

And this is an excerpt from a post re:  BRAFi being used as adjuvant with my personal comment in red below it:

BRIM8:  A phase II, randomized, double-blind, placebo controlled study of vermurafenib in adjuvant therapy in patients with sugically resected, cutaneous BRAF-mutant melanoma at high risk for recurrence (NCT01667419)
Abstract TPS9118, ASCO 
Lewis, Maio, Mandala, et al (Aurora, Colorado; Bergamo, Italy; San Francisco, CA; Essen, Germany)

Study for:  Stage IIC, IIIA, IIIB, or IIIC melanoma patients, BRAF V600 positive, and COMPLETELY RESECTED. Must have sentinel lymph node biopsy, even if no clinical or radiological evidence of disease.  If evidence of regional or sentinel lymph node involvement must undergo complete regional lymphadenectomy.  NO prior systemic therapy allowed – including interferon, limb perfusion or radiation therapy.  As of May 2014…still actively recruiting.  Birmingham, AL, Multiple CA sites, CO, FL, Illinois, Indiana, Kentucky, NJ, Michigan, Missouri, NY, NC, PA, SC, TN, TX, WV…as well as other international locations. 
Still actively enrolling!!!!!!!  Before my brain and lung met scenario…I would have qualified and think I would have done this.  Seems to me that using some of these successful therapies when the least disease possible is present is the way to go!

Hope that helps.  I wish you well.  Celeste

I cannot answer your question regarding where and under what payment circumstances you would be accepted for treatment or trials.  I suspect they will vary a great deal and you will have to contact each location you are interested in.  However, I have some information that may be helpful to you in understanding BRAF status, BRAF inhibitors and treatment when you are categorized as NED (no evidence of disease).

Here is some general information about BRAF…what it means, how treatments work:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html

As far as adjuvant therapy….  Many researchers in melanoma feel that adjuvant treatment, that is…treating folks when they have no evidence of disease…is very promising.  Many believe that the best way of preventing melanoma from ever coming back is to hit it when it's low…literally and figuratively!  Many studies have shown that when treating patients with active disease, the patients who do best are those who have the lowest tumor burden at the start.  However, some patients don't see the sense in it.  They figure they have some portion of odds in their favor that now that the melanoma has been removed…it will not return….if not forever, then at least for a while and they prefer to plan to treat it then…if they must.  They also consider that every treatment has some risk of side effects (some more than others) and they don't want to deal with those if they don't "have" to.  It is a very personal choice and one in which only the patient can decide what feels best for them.  That said, until recently, there weren't many adjuvant treatment options available…interferon being about it.  Now, there are many…some with more promise than others.  NED trials with Nivolumab (anti-PD1), Ipilimumab (Yervoy) and the BRAF inhibitors are ongoing.  The other caveat is that the results of these relatively new trials are not in yet.   Absolute proof of how effective these treatments will be is not available yet.  On a personal note:   I went 7 years with just having melanoma surgically removed.  But, then it started popping up in lung, brain, etc and while I had those tumors radiated or sugically removed, I decided to do something more. That was 2010 and I was lucky to enroll at the very start of an NED Nivo trial.  I completed the 2 1/2 year dosing schedule and now, 17 months since my last dose, I remain NED.  Many of my cohort are doing equally well.

This is a talk in which two well respected researchers, Ribas and Weber, discuss an ipi NED trial:  (scroll down to "ipi as adjuvant" heading)  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/pretty-darn-impressivea-chat-between.html

This is a list of NED/adjuvant trials from the ClinicalTrials.gov website in September.  You can do your own search using the search bubble on their home page.  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/studies-listed-as-adjuvants-for.html

And this is an excerpt from a post re:  BRAFi being used as adjuvant with my personal comment in red below it:

BRIM8:  A phase II, randomized, double-blind, placebo controlled study of vermurafenib in adjuvant therapy in patients with sugically resected, cutaneous BRAF-mutant melanoma at high risk for recurrence (NCT01667419)
Abstract TPS9118, ASCO 
Lewis, Maio, Mandala, et al (Aurora, Colorado; Bergamo, Italy; San Francisco, CA; Essen, Germany)

Study for:  Stage IIC, IIIA, IIIB, or IIIC melanoma patients, BRAF V600 positive, and COMPLETELY RESECTED. Must have sentinel lymph node biopsy, even if no clinical or radiological evidence of disease.  If evidence of regional or sentinel lymph node involvement must undergo complete regional lymphadenectomy.  NO prior systemic therapy allowed – including interferon, limb perfusion or radiation therapy.  As of May 2014…still actively recruiting.  Birmingham, AL, Multiple CA sites, CO, FL, Illinois, Indiana, Kentucky, NJ, Michigan, Missouri, NY, NC, PA, SC, TN, TX, WV…as well as other international locations. 
Still actively enrolling!!!!!!!  Before my brain and lung met scenario…I would have qualified and think I would have done this.  Seems to me that using some of these successful therapies when the least disease possible is present is the way to go!

Hope that helps.  I wish you well.  Celeste

I cannot answer your question regarding where and under what payment circumstances you would be accepted for treatment or trials.  I suspect they will vary a great deal and you will have to contact each location you are interested in.  However, I have some information that may be helpful to you in understanding BRAF status, BRAF inhibitors and treatment when you are categorized as NED (no evidence of disease).

Here is some general information about BRAF…what it means, how treatments work:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html

As far as adjuvant therapy….  Many researchers in melanoma feel that adjuvant treatment, that is…treating folks when they have no evidence of disease…is very promising.  Many believe that the best way of preventing melanoma from ever coming back is to hit it when it's low…literally and figuratively!  Many studies have shown that when treating patients with active disease, the patients who do best are those who have the lowest tumor burden at the start.  However, some patients don't see the sense in it.  They figure they have some portion of odds in their favor that now that the melanoma has been removed…it will not return….if not forever, then at least for a while and they prefer to plan to treat it then…if they must.  They also consider that every treatment has some risk of side effects (some more than others) and they don't want to deal with those if they don't "have" to.  It is a very personal choice and one in which only the patient can decide what feels best for them.  That said, until recently, there weren't many adjuvant treatment options available…interferon being about it.  Now, there are many…some with more promise than others.  NED trials with Nivolumab (anti-PD1), Ipilimumab (Yervoy) and the BRAF inhibitors are ongoing.  The other caveat is that the results of these relatively new trials are not in yet.   Absolute proof of how effective these treatments will be is not available yet.  On a personal note:   I went 7 years with just having melanoma surgically removed.  But, then it started popping up in lung, brain, etc and while I had those tumors radiated or sugically removed, I decided to do something more. That was 2010 and I was lucky to enroll at the very start of an NED Nivo trial.  I completed the 2 1/2 year dosing schedule and now, 17 months since my last dose, I remain NED.  Many of my cohort are doing equally well.

This is a talk in which two well respected researchers, Ribas and Weber, discuss an ipi NED trial:  (scroll down to "ipi as adjuvant" heading)  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/pretty-darn-impressivea-chat-between.html

This is a list of NED/adjuvant trials from the ClinicalTrials.gov website in September.  You can do your own search using the search bubble on their home page.  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/studies-listed-as-adjuvants-for.html

And this is an excerpt from a post re:  BRAFi being used as adjuvant with my personal comment in red below it:

BRIM8:  A phase II, randomized, double-blind, placebo controlled study of vermurafenib in adjuvant therapy in patients with sugically resected, cutaneous BRAF-mutant melanoma at high risk for recurrence (NCT01667419)
Abstract TPS9118, ASCO 
Lewis, Maio, Mandala, et al (Aurora, Colorado; Bergamo, Italy; San Francisco, CA; Essen, Germany)

Study for:  Stage IIC, IIIA, IIIB, or IIIC melanoma patients, BRAF V600 positive, and COMPLETELY RESECTED. Must have sentinel lymph node biopsy, even if no clinical or radiological evidence of disease.  If evidence of regional or sentinel lymph node involvement must undergo complete regional lymphadenectomy.  NO prior systemic therapy allowed – including interferon, limb perfusion or radiation therapy.  As of May 2014…still actively recruiting.  Birmingham, AL, Multiple CA sites, CO, FL, Illinois, Indiana, Kentucky, NJ, Michigan, Missouri, NY, NC, PA, SC, TN, TX, WV…as well as other international locations. 
Still actively enrolling!!!!!!!  Before my brain and lung met scenario…I would have qualified and think I would have done this.  Seems to me that using some of these successful therapies when the least disease possible is present is the way to go!

Hope that helps.  I wish you well.  Celeste

Basic advise regarding countries other than the US for clinical trials. There are a fair number of Australian based companies that run clinical trial arms in Australia for US based biotech companies. The FDA readily accepts data generated in these studies. I have personally worked with a group doing their phase two trials for an IND in Australia. Given the above list that is your best bet. 

Maybe someone on this site has contact information for Australian based resources.

Best Wishes

Basic advise regarding countries other than the US for clinical trials. There are a fair number of Australian based companies that run clinical trial arms in Australia for US based biotech companies. The FDA readily accepts data generated in these studies. I have personally worked with a group doing their phase two trials for an IND in Australia. Given the above list that is your best bet. 

Maybe someone on this site has contact information for Australian based resources.

Best Wishes

Basic advise regarding countries other than the US for clinical trials. There are a fair number of Australian based companies that run clinical trial arms in Australia for US based biotech companies. The FDA readily accepts data generated in these studies. I have personally worked with a group doing their phase two trials for an IND in Australia. Given the above list that is your best bet. 

Maybe someone on this site has contact information for Australian based resources.

Best Wishes