How to find a great melanoma specialist?

The braf/mek is the combo FDA approved in the US on 1/9/14. It is Tafinlar/Mekenist. Other FDA approved options are Zelboraf but why do it since we can now do the combo. Those are the gene therapy meds. You have to be BRAF positive for the Tafinlar and Zelboraf. These tend to show quick results when they work but the results tend not to last as long as the immunotherapy does. Although I have heard of people being on them fine for over 2 years and counting. So your current doc's advice is actually pretty good.

The immunotherapy which can provide long term benefits FDA approved is Yervoy and the old IL-2. There are people that are fine for over 10 years and counting.

So if you skip the FDA approved stuff for now and go right into a clinical trial all clinical trials are on http://www.clinicaltrials.gov. I think it is some FDA law that all trials have to be there but not sure. Something with PD-1 would be the best choice in my opinion although Dr. Rosenberg at NIH has improved his TIL process a lot over the past decade or so.

For good docs I have read a lot of people on here liking Moffit in Tampa. Some have liked Memorial Sloan Kettering in New York. MD Anderson and NIH are good too. Also a lot have liked a doc in Beverly Hills. I currently go to Mayo in Rochester Minnesota every 3 weeks for the Merck PD-1.

Not sure if that helped much but this is definitely the place to be with this disease. There are a lot more knowledgable people than I.

I think if I just got this and could start over I would call Moffit in Tampa. Here's one of the members blogs with lots of good info. http://chaoticallypreciselifeloveandmelanoma.blogspot.com/   She went to Moffit.

Good luck to you.

The braf/mek is the combo FDA approved in the US on 1/9/14. It is Tafinlar/Mekenist. Other FDA approved options are Zelboraf but why do it since we can now do the combo. Those are the gene therapy meds. You have to be BRAF positive for the Tafinlar and Zelboraf. These tend to show quick results when they work but the results tend not to last as long as the immunotherapy does. Although I have heard of people being on them fine for over 2 years and counting. So your current doc's advice is actually pretty good.

The immunotherapy which can provide long term benefits FDA approved is Yervoy and the old IL-2. There are people that are fine for over 10 years and counting.

So if you skip the FDA approved stuff for now and go right into a clinical trial all clinical trials are on http://www.clinicaltrials.gov. I think it is some FDA law that all trials have to be there but not sure. Something with PD-1 would be the best choice in my opinion although Dr. Rosenberg at NIH has improved his TIL process a lot over the past decade or so.

For good docs I have read a lot of people on here liking Moffit in Tampa. Some have liked Memorial Sloan Kettering in New York. MD Anderson and NIH are good too. Also a lot have liked a doc in Beverly Hills. I currently go to Mayo in Rochester Minnesota every 3 weeks for the Merck PD-1.

Not sure if that helped much but this is definitely the place to be with this disease. There are a lot more knowledgable people than I.

I think if I just got this and could start over I would call Moffit in Tampa. Here's one of the members blogs with lots of good info. http://chaoticallypreciselifeloveandmelanoma.blogspot.com/   She went to Moffit.

Good luck to you.

The braf/mek is the combo FDA approved in the US on 1/9/14. It is Tafinlar/Mekenist. Other FDA approved options are Zelboraf but why do it since we can now do the combo. Those are the gene therapy meds. You have to be BRAF positive for the Tafinlar and Zelboraf. These tend to show quick results when they work but the results tend not to last as long as the immunotherapy does. Although I have heard of people being on them fine for over 2 years and counting. So your current doc's advice is actually pretty good.

The immunotherapy which can provide long term benefits FDA approved is Yervoy and the old IL-2. There are people that are fine for over 10 years and counting.

So if you skip the FDA approved stuff for now and go right into a clinical trial all clinical trials are on http://www.clinicaltrials.gov. I think it is some FDA law that all trials have to be there but not sure. Something with PD-1 would be the best choice in my opinion although Dr. Rosenberg at NIH has improved his TIL process a lot over the past decade or so.

For good docs I have read a lot of people on here liking Moffit in Tampa. Some have liked Memorial Sloan Kettering in New York. MD Anderson and NIH are good too. Also a lot have liked a doc in Beverly Hills. I currently go to Mayo in Rochester Minnesota every 3 weeks for the Merck PD-1.

Not sure if that helped much but this is definitely the place to be with this disease. There are a lot more knowledgable people than I.

I think if I just got this and could start over I would call Moffit in Tampa. Here's one of the members blogs with lots of good info. http://chaoticallypreciselifeloveandmelanoma.blogspot.com/   She went to Moffit.

Good luck to you.

Hi,

I'm really sorry you've gotten this new diagnosis. You're doing the right thing to look for a knowledgeable melanoma specialist oncologist.

The Aim at Melanoma (AIM) web site* has a 'find the right doctor' page listing many melanoma specialists across the country. See their list here and choose Colorado — there are 4 melanoma specialist doctors listed, 2 at Univ. of Colorado in addition to a couple of other elsewhere.

As far as going out of state, flying out each time you need to see your doctor is not ideal — I know, for a few months now I've been flying every other week to Oregon for a clinical trial I'm participating in. My regular oncologist, though, is in SF where I live. It's infinitely more practical for my primary relationship to be local. I'm luck that it's also at an NCI-designated cancer center I go to.

I did go to to MD Anderson once for a second opinion. They're larger, and certainly a great place to go, but in my experience that doesn't instantly mean they will have more of a handle on my disease than my local melanoma specialist. 

Hope that helps. 
– Kyle

* I was going to refer you to MRF's treatment center finder on this site, but it's broken for me, on both Mac and Windows — it wouild have been, on the menu above, click "Understanding Melanoma" and then choose "Treatment Center Finder" over on the right. And then click the "Find a Melanoma Treatment Center" button — but it's not working for me.

Hi,

I'm really sorry you've gotten this new diagnosis. You're doing the right thing to look for a knowledgeable melanoma specialist oncologist.

The Aim at Melanoma (AIM) web site* has a 'find the right doctor' page listing many melanoma specialists across the country. See their list here and choose Colorado — there are 4 melanoma specialist doctors listed, 2 at Univ. of Colorado in addition to a couple of other elsewhere.

As far as going out of state, flying out each time you need to see your doctor is not ideal — I know, for a few months now I've been flying every other week to Oregon for a clinical trial I'm participating in. My regular oncologist, though, is in SF where I live. It's infinitely more practical for my primary relationship to be local. I'm luck that it's also at an NCI-designated cancer center I go to.

I did go to to MD Anderson once for a second opinion. They're larger, and certainly a great place to go, but in my experience that doesn't instantly mean they will have more of a handle on my disease than my local melanoma specialist. 

Hope that helps. 
– Kyle

* I was going to refer you to MRF's treatment center finder on this site, but it's broken for me, on both Mac and Windows — it wouild have been, on the menu above, click "Understanding Melanoma" and then choose "Treatment Center Finder" over on the right. And then click the "Find a Melanoma Treatment Center" button — but it's not working for me.

Hi,

I'm really sorry you've gotten this new diagnosis. You're doing the right thing to look for a knowledgeable melanoma specialist oncologist.

The Aim at Melanoma (AIM) web site* has a 'find the right doctor' page listing many melanoma specialists across the country. See their list here and choose Colorado — there are 4 melanoma specialist doctors listed, 2 at Univ. of Colorado in addition to a couple of other elsewhere.

As far as going out of state, flying out each time you need to see your doctor is not ideal — I know, for a few months now I've been flying every other week to Oregon for a clinical trial I'm participating in. My regular oncologist, though, is in SF where I live. It's infinitely more practical for my primary relationship to be local. I'm luck that it's also at an NCI-designated cancer center I go to.

I did go to to MD Anderson once for a second opinion. They're larger, and certainly a great place to go, but in my experience that doesn't instantly mean they will have more of a handle on my disease than my local melanoma specialist. 

Hope that helps. 
– Kyle

* I was going to refer you to MRF's treatment center finder on this site, but it's broken for me, on both Mac and Windows — it wouild have been, on the menu above, click "Understanding Melanoma" and then choose "Treatment Center Finder" over on the right. And then click the "Find a Melanoma Treatment Center" button — but it's not working for me.

Finding a good specialist depends on a lot of things. First, tell us where you are located. You want to be able to consult with someone nearby. As an alternative, you want a specialist who is comfortable in a "virtual" environment. But primary, IMO, is to find someone you connect with – and who is very knowledgeable about melanoma. There are great, caring, connecting melanoma specialists at the top melanoma centers of excellence – MDA, Moffitt, Dana Farber, MSK, Johns Hopkins, NIH, and others. But someone else might swear by someone that you wouldn't connect with.

We have had very good experiences at Johns Hopkins and UPenn – if you are on the East Coast or travel is not a big deal for you, you could consult with Dr. Sharfman at Hopkins or Lynn Schuchter at UPenn.

Wishing you the best it can be —

Hazel

Finding a good specialist depends on a lot of things. First, tell us where you are located. You want to be able to consult with someone nearby. As an alternative, you want a specialist who is comfortable in a "virtual" environment. But primary, IMO, is to find someone you connect with – and who is very knowledgeable about melanoma. There are great, caring, connecting melanoma specialists at the top melanoma centers of excellence – MDA, Moffitt, Dana Farber, MSK, Johns Hopkins, NIH, and others. But someone else might swear by someone that you wouldn't connect with.

We have had very good experiences at Johns Hopkins and UPenn – if you are on the East Coast or travel is not a big deal for you, you could consult with Dr. Sharfman at Hopkins or Lynn Schuchter at UPenn.

Wishing you the best it can be —

Hazel

Finding a good specialist depends on a lot of things. First, tell us where you are located. You want to be able to consult with someone nearby. As an alternative, you want a specialist who is comfortable in a "virtual" environment. But primary, IMO, is to find someone you connect with – and who is very knowledgeable about melanoma. There are great, caring, connecting melanoma specialists at the top melanoma centers of excellence – MDA, Moffitt, Dana Farber, MSK, Johns Hopkins, NIH, and others. But someone else might swear by someone that you wouldn't connect with.

We have had very good experiences at Johns Hopkins and UPenn – if you are on the East Coast or travel is not a big deal for you, you could consult with Dr. Sharfman at Hopkins or Lynn Schuchter at UPenn.

Wishing you the best it can be —

Hazel

Actually make that 5 doctors listed on the AIM site in Colorado — Denver, Ft. Collins, Aurora.

Actually make that 5 doctors listed on the AIM site in Colorado — Denver, Ft. Collins, Aurora.

Actually make that 5 doctors listed on the AIM site in Colorado — Denver, Ft. Collins, Aurora.