Newly Diagnosed

I am so sorry about your diagnosis and hope you will get some answers regarding treatment options here on the board.

Why did it come back after so many years??? What was the depth of your primary in 2002?
 

I am so sorry about your diagnosis and hope you will get some answers regarding treatment options here on the board.

Why did it come back after so many years??? What was the depth of your primary in 2002?
 

I am so sorry about your diagnosis and hope you will get some answers regarding treatment options here on the board.

Why did it come back after so many years??? What was the depth of your primary in 2002?
 

Welcome to the group that no one really wants to join!  I'm sorry for your diagnosis but very glad that you found us.  There are some amazing people on this site including people with melanoma themselves or loved ones of melanoma warriors.  Many folks have done tons of research and I hope they will touch base with you shortly.  There are even some folks that check in here that are NED (No Evidence of Disease) twenty years after being diagnosed and after advancing to Stage IV.  I just want you to know that such a thing is possible.

The first thing that I would suggest you do is to find yourself a melanoma specialist.  There have been many recent advancements in melanoma treatment that general oncologists might not be aware of or have much experience in.  I am not familiar with doctors in the Seattle area but I'm sure other folks will chime in with suggestions.  I would strongly encourge you to get multiple opinions and unless your tumor status is immediately life-threatening, wait to decide on your course of treatment until you have met with several recommended oncologists.  I met with three myself and received three different treatment recommendations. It is important that you are comfortable with your doctor and your doctor's approach.

Best of luck and health to you!

Maggie

Welcome to the group that no one really wants to join!  I'm sorry for your diagnosis but very glad that you found us.  There are some amazing people on this site including people with melanoma themselves or loved ones of melanoma warriors.  Many folks have done tons of research and I hope they will touch base with you shortly.  There are even some folks that check in here that are NED (No Evidence of Disease) twenty years after being diagnosed and after advancing to Stage IV.  I just want you to know that such a thing is possible.

The first thing that I would suggest you do is to find yourself a melanoma specialist.  There have been many recent advancements in melanoma treatment that general oncologists might not be aware of or have much experience in.  I am not familiar with doctors in the Seattle area but I'm sure other folks will chime in with suggestions.  I would strongly encourge you to get multiple opinions and unless your tumor status is immediately life-threatening, wait to decide on your course of treatment until you have met with several recommended oncologists.  I met with three myself and received three different treatment recommendations. It is important that you are comfortable with your doctor and your doctor's approach.

Best of luck and health to you!

Maggie

Welcome to the group that no one really wants to join!  I'm sorry for your diagnosis but very glad that you found us.  There are some amazing people on this site including people with melanoma themselves or loved ones of melanoma warriors.  Many folks have done tons of research and I hope they will touch base with you shortly.  There are even some folks that check in here that are NED (No Evidence of Disease) twenty years after being diagnosed and after advancing to Stage IV.  I just want you to know that such a thing is possible.

The first thing that I would suggest you do is to find yourself a melanoma specialist.  There have been many recent advancements in melanoma treatment that general oncologists might not be aware of or have much experience in.  I am not familiar with doctors in the Seattle area but I'm sure other folks will chime in with suggestions.  I would strongly encourge you to get multiple opinions and unless your tumor status is immediately life-threatening, wait to decide on your course of treatment until you have met with several recommended oncologists.  I met with three myself and received three different treatment recommendations. It is important that you are comfortable with your doctor and your doctor's approach.

Best of luck and health to you!

Maggie

Sorry that you have had to join us once again.  My first recommendation is, no matter how much you like and think of your oncologist, you need a melanoma specialist!!!  The difference that makes is tremendous!  Things have changed a lot since your previous diagnosis.  Ipi (Yervoy) is a first line, FDA approved immunotherapy available to you.  BRAF testing of your tumor (possibly via bonch???) might be important to you as well since there are many BRAF inhibitors, often incombination with MEK inhibitors, that might be very effective for you if you are positive for the BRAF mutation.  Nivolumab (Opdivo) and Keytruda…both are anti-PD1 products (another type of immunotherapy)…are also FDA approved now, though they have been approved as second line therapy after one has progressed on ipi and the BRAF inhibitors (if your tumor is BRAF positive).  There are also numerous clinical trials that hold promise.  Check out:  https://clinicaltrials.gov/

Put "Stage IV melanoma" in the search bar and you will see many options.  Two that I think are particularly interesting are:  https://clinicaltrials.gov/ct2/show/NCT02009384?term=stage+IV+melanoma&rank=21  and  https://clinicaltrials.gov/ct2/show/NCT02073123?term=stage+IV+melanoma&rank=18

The first trial gives a med to decrease T-reg levels before administering ipi….something that a lot of researchers think holds great promise and that a trial I particepated in gave credence to, in that those with lower T-reg levels before being given Nivolumab did better than those with higher levels at the start.

The second trial combines ipi with an IDO inhibitor.  Just another way to try to get better responses from ipi.

There are many, many more options and combos…this is just a brief pass.  Please ask questions of the knowledgeable folks here when you need.  Wishing you my best.  Celeste

Sorry that you have had to join us once again.  My first recommendation is, no matter how much you like and think of your oncologist, you need a melanoma specialist!!!  The difference that makes is tremendous!  Things have changed a lot since your previous diagnosis.  Ipi (Yervoy) is a first line, FDA approved immunotherapy available to you.  BRAF testing of your tumor (possibly via bonch???) might be important to you as well since there are many BRAF inhibitors, often incombination with MEK inhibitors, that might be very effective for you if you are positive for the BRAF mutation.  Nivolumab (Opdivo) and Keytruda…both are anti-PD1 products (another type of immunotherapy)…are also FDA approved now, though they have been approved as second line therapy after one has progressed on ipi and the BRAF inhibitors (if your tumor is BRAF positive).  There are also numerous clinical trials that hold promise.  Check out:  https://clinicaltrials.gov/

Put "Stage IV melanoma" in the search bar and you will see many options.  Two that I think are particularly interesting are:  https://clinicaltrials.gov/ct2/show/NCT02009384?term=stage+IV+melanoma&rank=21  and  https://clinicaltrials.gov/ct2/show/NCT02073123?term=stage+IV+melanoma&rank=18

The first trial gives a med to decrease T-reg levels before administering ipi….something that a lot of researchers think holds great promise and that a trial I particepated in gave credence to, in that those with lower T-reg levels before being given Nivolumab did better than those with higher levels at the start.

The second trial combines ipi with an IDO inhibitor.  Just another way to try to get better responses from ipi.

There are many, many more options and combos…this is just a brief pass.  Please ask questions of the knowledgeable folks here when you need.  Wishing you my best.  Celeste

Sorry that you have had to join us once again.  My first recommendation is, no matter how much you like and think of your oncologist, you need a melanoma specialist!!!  The difference that makes is tremendous!  Things have changed a lot since your previous diagnosis.  Ipi (Yervoy) is a first line, FDA approved immunotherapy available to you.  BRAF testing of your tumor (possibly via bonch???) might be important to you as well since there are many BRAF inhibitors, often incombination with MEK inhibitors, that might be very effective for you if you are positive for the BRAF mutation.  Nivolumab (Opdivo) and Keytruda…both are anti-PD1 products (another type of immunotherapy)…are also FDA approved now, though they have been approved as second line therapy after one has progressed on ipi and the BRAF inhibitors (if your tumor is BRAF positive).  There are also numerous clinical trials that hold promise.  Check out:  https://clinicaltrials.gov/

Put "Stage IV melanoma" in the search bar and you will see many options.  Two that I think are particularly interesting are:  https://clinicaltrials.gov/ct2/show/NCT02009384?term=stage+IV+melanoma&rank=21  and  https://clinicaltrials.gov/ct2/show/NCT02073123?term=stage+IV+melanoma&rank=18

The first trial gives a med to decrease T-reg levels before administering ipi….something that a lot of researchers think holds great promise and that a trial I particepated in gave credence to, in that those with lower T-reg levels before being given Nivolumab did better than those with higher levels at the start.

The second trial combines ipi with an IDO inhibitor.  Just another way to try to get better responses from ipi.

There are many, many more options and combos…this is just a brief pass.  Please ask questions of the knowledgeable folks here when you need.  Wishing you my best.  Celeste

What reason was given that chemo is not an option? If one splits hairs, most if not all current systemic therapies for melanoma are not "chemotherapy" per se, but rather either "targeted therapy" (e.g. Dabrafinib + Mekinist) or "immunotherapy" (e.g., Yervoy). Do you know if those types of systemic treatment were somehow ruled out? Was a BRAF DNA test done on a sample of one of the tumors? A lot of questions I know. If you haven't been given the answers, all the more reason to seek an oncologist who specializes in melanoma. If you're not sure how to find one, we can help here.

What reason was given that chemo is not an option? If one splits hairs, most if not all current systemic therapies for melanoma are not "chemotherapy" per se, but rather either "targeted therapy" (e.g. Dabrafinib + Mekinist) or "immunotherapy" (e.g., Yervoy). Do you know if those types of systemic treatment were somehow ruled out? Was a BRAF DNA test done on a sample of one of the tumors? A lot of questions I know. If you haven't been given the answers, all the more reason to seek an oncologist who specializes in melanoma. If you're not sure how to find one, we can help here.

What reason was given that chemo is not an option? If one splits hairs, most if not all current systemic therapies for melanoma are not "chemotherapy" per se, but rather either "targeted therapy" (e.g. Dabrafinib + Mekinist) or "immunotherapy" (e.g., Yervoy). Do you know if those types of systemic treatment were somehow ruled out? Was a BRAF DNA test done on a sample of one of the tumors? A lot of questions I know. If you haven't been given the answers, all the more reason to seek an oncologist who specializes in melanoma. If you're not sure how to find one, we can help here.

Sorry you had to join us. I hate when I hear stories of melanoma returning after such a long stretch let alone a recurrence for anyone. I think Bubbles is spot on, there are options and I would find someone who "knows" the ins and outs of melanoma. I'm also curious as to why chemo wouldn't be an option? I definitely wouldn't say that's the immeadiate thing to look too with all other treatments available but strange your oncologist would rule it our period. Wishing you the best!

Josh

Sorry you had to join us. I hate when I hear stories of melanoma returning after such a long stretch let alone a recurrence for anyone. I think Bubbles is spot on, there are options and I would find someone who "knows" the ins and outs of melanoma. I'm also curious as to why chemo wouldn't be an option? I definitely wouldn't say that's the immeadiate thing to look too with all other treatments available but strange your oncologist would rule it our period. Wishing you the best!

Josh

Sorry you had to join us. I hate when I hear stories of melanoma returning after such a long stretch let alone a recurrence for anyone. I think Bubbles is spot on, there are options and I would find someone who "knows" the ins and outs of melanoma. I'm also curious as to why chemo wouldn't be an option? I definitely wouldn't say that's the immeadiate thing to look too with all other treatments available but strange your oncologist would rule it our period. Wishing you the best!

Josh