Melanoma treatment

Sorry for all your troubles.  I am not sure which hospital to advise you to go to in your area…all you listed  (Sloan, John Hopkins) are obviously good facilities.  Most places will see a patient for a second opinion.  If that is what you want…you may have to become very persistent and reach the office of the doctor in particular.  I know that is not easy and perhaps others on this board can give you better advice with that.

As far as ipi, it is not a bad idea.  It has the best overall results for more patients than anything else currently approved.  A possible exception to that are the BRAF inhibitors, but you would need to know the BRAF mutation status of your husband's tumors…something your current docs should know.  Additional treatment options are the anti-PD1 products (Nivolumab, also called Opdivo by BMS..and Pembrolizumab by Merck).  Both are not currently FDA approved, though they hopefully will by by the end of this year, but ARE both available in expanded access programs.  However, both require progression on Ipi…meaning you would have to take ipi first…then, if you fail that, you may be elgible for the expanded access program.  One more thought….the ipi/nivo combo is now in an expanded access program as well…though I'm not sure that it is actually serving patients yet.  At any rate, for that program you must be IPI and NIVO naive!!!  Meaning, never having had either. 

I would certainly want to talk to my doc about all the options before I committed to my next step if possible.  For more info on each of the options I mentioned, you can access my blog (address below) and use the search bubble in the top left corner.

I wish you and your husband my best.

Sorry for all your troubles.  I am not sure which hospital to advise you to go to in your area…all you listed  (Sloan, John Hopkins) are obviously good facilities.  Most places will see a patient for a second opinion.  If that is what you want…you may have to become very persistent and reach the office of the doctor in particular.  I know that is not easy and perhaps others on this board can give you better advice with that.

As far as ipi, it is not a bad idea.  It has the best overall results for more patients than anything else currently approved.  A possible exception to that are the BRAF inhibitors, but you would need to know the BRAF mutation status of your husband's tumors…something your current docs should know.  Additional treatment options are the anti-PD1 products (Nivolumab, also called Opdivo by BMS..and Pembrolizumab by Merck).  Both are not currently FDA approved, though they hopefully will by by the end of this year, but ARE both available in expanded access programs.  However, both require progression on Ipi…meaning you would have to take ipi first…then, if you fail that, you may be elgible for the expanded access program.  One more thought….the ipi/nivo combo is now in an expanded access program as well…though I'm not sure that it is actually serving patients yet.  At any rate, for that program you must be IPI and NIVO naive!!!  Meaning, never having had either. 

I would certainly want to talk to my doc about all the options before I committed to my next step if possible.  For more info on each of the options I mentioned, you can access my blog (address below) and use the search bubble in the top left corner.

I wish you and your husband my best.

Sorry for all your troubles.  I am not sure which hospital to advise you to go to in your area…all you listed  (Sloan, John Hopkins) are obviously good facilities.  Most places will see a patient for a second opinion.  If that is what you want…you may have to become very persistent and reach the office of the doctor in particular.  I know that is not easy and perhaps others on this board can give you better advice with that.

As far as ipi, it is not a bad idea.  It has the best overall results for more patients than anything else currently approved.  A possible exception to that are the BRAF inhibitors, but you would need to know the BRAF mutation status of your husband's tumors…something your current docs should know.  Additional treatment options are the anti-PD1 products (Nivolumab, also called Opdivo by BMS..and Pembrolizumab by Merck).  Both are not currently FDA approved, though they hopefully will by by the end of this year, but ARE both available in expanded access programs.  However, both require progression on Ipi…meaning you would have to take ipi first…then, if you fail that, you may be elgible for the expanded access program.  One more thought….the ipi/nivo combo is now in an expanded access program as well…though I'm not sure that it is actually serving patients yet.  At any rate, for that program you must be IPI and NIVO naive!!!  Meaning, never having had either. 

I would certainly want to talk to my doc about all the options before I committed to my next step if possible.  For more info on each of the options I mentioned, you can access my blog (address below) and use the search bubble in the top left corner.

I wish you and your husband my best.

Realistically, Yervoy would most likely be an option suggested at any of the major institutions.  If his tumors are BRAF positive, they may suggest other options, but maybe not since his tumor burden is low.  There is also the option of a clinical trial.  Anti-pd1 is looking very good, however, the anti-pd1 expanded access trial requires you to fail Yervoy first.  So it may be that Yervoy really is the next best choice for you.  I'm sure others will respond with their ideas. 

Realistically, Yervoy would most likely be an option suggested at any of the major institutions.  If his tumors are BRAF positive, they may suggest other options, but maybe not since his tumor burden is low.  There is also the option of a clinical trial.  Anti-pd1 is looking very good, however, the anti-pd1 expanded access trial requires you to fail Yervoy first.  So it may be that Yervoy really is the next best choice for you.  I'm sure others will respond with their ideas. 

Realistically, Yervoy would most likely be an option suggested at any of the major institutions.  If his tumors are BRAF positive, they may suggest other options, but maybe not since his tumor burden is low.  There is also the option of a clinical trial.  Anti-pd1 is looking very good, however, the anti-pd1 expanded access trial requires you to fail Yervoy first.  So it may be that Yervoy really is the next best choice for you.  I'm sure others will respond with their ideas. 

Wow. I am suprised any doc is still doing IL-2 before Yervoy. That must have been rough. I would listen to Celeste and Janner. Also listen to what his and your gut tells you. Ipi is a good choice with a PD1 expanded access program as a backup if ipi doesn't work. If I understand my doc right the ipi/nivo combo is for him anyway patients who have a much higher tumor load and the side affects can be rough but everyone is different. The way I understand the BRAF trend is if you need quick results so in my opinion I would save them for later assuming he has the BRAF mutation. Also before starting ipi a quick trip to Memorial Sloan Kettering might be a good idea. They have lots of trials going on but taking ipi first could be an exclusion. For example the anti-kir/ipi trial but who knows the side affects thus talking to the doctor there would be best plus with such a low tumor load they may have something better.

Here's a link to MSK's melanoma trials

http://www.mskcc.org/cancer-care/adult/melanoma/clinical-trials?keys=&phase=All

Personally I've done the zelboraf, yervoy, tafinlar/mekenist and now am on Merck's PD1 all since June of last year.

Also I learned that if I had to cancel an appointment because of being treated elsewhere during that time they would be happy to reschedule instead of cancel. I was being treated elsewhere and Memorial Sloan Kettering did that twice. They got frustrated so the 3rd time I finally cancelled and never made it there but I hear they are one of the best for melanoma especially the NE coast. The doc I was supposed to see isn't Dr Wolchok but Dr Postow who reports to Wolchok.

Dunno if that helps but it is something to digest.

Wow. I am suprised any doc is still doing IL-2 before Yervoy. That must have been rough. I would listen to Celeste and Janner. Also listen to what his and your gut tells you. Ipi is a good choice with a PD1 expanded access program as a backup if ipi doesn't work. If I understand my doc right the ipi/nivo combo is for him anyway patients who have a much higher tumor load and the side affects can be rough but everyone is different. The way I understand the BRAF trend is if you need quick results so in my opinion I would save them for later assuming he has the BRAF mutation. Also before starting ipi a quick trip to Memorial Sloan Kettering might be a good idea. They have lots of trials going on but taking ipi first could be an exclusion. For example the anti-kir/ipi trial but who knows the side affects thus talking to the doctor there would be best plus with such a low tumor load they may have something better.

Here's a link to MSK's melanoma trials

http://www.mskcc.org/cancer-care/adult/melanoma/clinical-trials?keys=&phase=All

Personally I've done the zelboraf, yervoy, tafinlar/mekenist and now am on Merck's PD1 all since June of last year.

Also I learned that if I had to cancel an appointment because of being treated elsewhere during that time they would be happy to reschedule instead of cancel. I was being treated elsewhere and Memorial Sloan Kettering did that twice. They got frustrated so the 3rd time I finally cancelled and never made it there but I hear they are one of the best for melanoma especially the NE coast. The doc I was supposed to see isn't Dr Wolchok but Dr Postow who reports to Wolchok.

Dunno if that helps but it is something to digest.

Wow. I am suprised any doc is still doing IL-2 before Yervoy. That must have been rough. I would listen to Celeste and Janner. Also listen to what his and your gut tells you. Ipi is a good choice with a PD1 expanded access program as a backup if ipi doesn't work. If I understand my doc right the ipi/nivo combo is for him anyway patients who have a much higher tumor load and the side affects can be rough but everyone is different. The way I understand the BRAF trend is if you need quick results so in my opinion I would save them for later assuming he has the BRAF mutation. Also before starting ipi a quick trip to Memorial Sloan Kettering might be a good idea. They have lots of trials going on but taking ipi first could be an exclusion. For example the anti-kir/ipi trial but who knows the side affects thus talking to the doctor there would be best plus with such a low tumor load they may have something better.

Here's a link to MSK's melanoma trials

http://www.mskcc.org/cancer-care/adult/melanoma/clinical-trials?keys=&phase=All

Personally I've done the zelboraf, yervoy, tafinlar/mekenist and now am on Merck's PD1 all since June of last year.

Also I learned that if I had to cancel an appointment because of being treated elsewhere during that time they would be happy to reschedule instead of cancel. I was being treated elsewhere and Memorial Sloan Kettering did that twice. They got frustrated so the 3rd time I finally cancelled and never made it there but I hear they are one of the best for melanoma especially the NE coast. The doc I was supposed to see isn't Dr Wolchok but Dr Postow who reports to Wolchok.

Dunno if that helps but it is something to digest.

Two of my melanoma oncologists both told me that no one ever dies from having melanoma in their lung.  It's when it eventually spreads to other more dangerous locations that its a real problem.  Given that your husband has a low tumor burden and they are located in the lung, his situation is not as urgent as it is for other folks (with mets in brain, liver, etc).   I only mention that if you wanted to wait for an appointment with a melanoma specialist it would probably be fine.  Having said that, a melanoma specialist would likely put him on Ipi anyway.  BUT, it is always nice to have Ipi/Yervoy administered by someone who has a good amount of experience with it.  This is because there are side-effects to watch out for and the results can be hard to read.

Best of luck to you and your husband.

Maggie

Two of my melanoma oncologists both told me that no one ever dies from having melanoma in their lung.  It's when it eventually spreads to other more dangerous locations that its a real problem.  Given that your husband has a low tumor burden and they are located in the lung, his situation is not as urgent as it is for other folks (with mets in brain, liver, etc).   I only mention that if you wanted to wait for an appointment with a melanoma specialist it would probably be fine.  Having said that, a melanoma specialist would likely put him on Ipi anyway.  BUT, it is always nice to have Ipi/Yervoy administered by someone who has a good amount of experience with it.  This is because there are side-effects to watch out for and the results can be hard to read.

Best of luck to you and your husband.

Maggie

Two of my melanoma oncologists both told me that no one ever dies from having melanoma in their lung.  It's when it eventually spreads to other more dangerous locations that its a real problem.  Given that your husband has a low tumor burden and they are located in the lung, his situation is not as urgent as it is for other folks (with mets in brain, liver, etc).   I only mention that if you wanted to wait for an appointment with a melanoma specialist it would probably be fine.  Having said that, a melanoma specialist would likely put him on Ipi anyway.  BUT, it is always nice to have Ipi/Yervoy administered by someone who has a good amount of experience with it.  This is because there are side-effects to watch out for and the results can be hard to read.

Best of luck to you and your husband.

Maggie

I generally feel that a second opinion from a well-known melanoma center makes sense when dealing with metastatic disease. The fact is, a number of options exist now but no-one knows the best option. The centers you metion are all current with the latest treatment options. They will all have a variation of clinical trials available and that may change specific treatment recommendations, but in this case probably not by much.

I am happy to talk offline about securing an appointment; if that is of interest to you.  Just email me at tturnham@melanoma.org.

Tim–MRF

I generally feel that a second opinion from a well-known melanoma center makes sense when dealing with metastatic disease. The fact is, a number of options exist now but no-one knows the best option. The centers you metion are all current with the latest treatment options. They will all have a variation of clinical trials available and that may change specific treatment recommendations, but in this case probably not by much.

I am happy to talk offline about securing an appointment; if that is of interest to you.  Just email me at tturnham@melanoma.org.

Tim–MRF

I generally feel that a second opinion from a well-known melanoma center makes sense when dealing with metastatic disease. The fact is, a number of options exist now but no-one knows the best option. The centers you metion are all current with the latest treatment options. They will all have a variation of clinical trials available and that may change specific treatment recommendations, but in this case probably not by much.

I am happy to talk offline about securing an appointment; if that is of interest to you.  Just email me at tturnham@melanoma.org.

Tim–MRF