Stage IV, NED, next steps?

The opdivo yervoy trial has the best immunotherapy results but is very toxic. Since you are NED that might be a bit much in my opinion.

opdivo is pd1. The other pd1 is keytruda. Both are fda approved mono therapy. Also yervoy is fda approved mono therapy. Currently yervoy has to fail you as well as braf if you are braf positive before you can do pd1. That's outside of a trial of course.

The gene targeted therapies are zelboraf or the tafinlar mekenist combo. However since you are NED they don't make sense to me. Also you have to be braf positive. Sunlight is a significant side affect.

yervoy is given via iv every 3 weeks four times. If it works they might offer a maintenance dose. Opdivo is given every 2 weeks and keytruda is given every 3 weeks. There really is no limit to the amount of doses. I've been on them for over a year.

Thats pretty much the new stuff that I know of. It sounds like the doc is offering the best standard treatment he has. Now trials are vast and varied. Doing some stuff like yervoy now can exclude you from some trials. I'm really not sure what I would do in your shoes.

Artie

The opdivo yervoy trial has the best immunotherapy results but is very toxic. Since you are NED that might be a bit much in my opinion.

opdivo is pd1. The other pd1 is keytruda. Both are fda approved mono therapy. Also yervoy is fda approved mono therapy. Currently yervoy has to fail you as well as braf if you are braf positive before you can do pd1. That's outside of a trial of course.

The gene targeted therapies are zelboraf or the tafinlar mekenist combo. However since you are NED they don't make sense to me. Also you have to be braf positive. Sunlight is a significant side affect.

yervoy is given via iv every 3 weeks four times. If it works they might offer a maintenance dose. Opdivo is given every 2 weeks and keytruda is given every 3 weeks. There really is no limit to the amount of doses. I've been on them for over a year.

Thats pretty much the new stuff that I know of. It sounds like the doc is offering the best standard treatment he has. Now trials are vast and varied. Doing some stuff like yervoy now can exclude you from some trials. I'm really not sure what I would do in your shoes.

Artie

The opdivo yervoy trial has the best immunotherapy results but is very toxic. Since you are NED that might be a bit much in my opinion.

opdivo is pd1. The other pd1 is keytruda. Both are fda approved mono therapy. Also yervoy is fda approved mono therapy. Currently yervoy has to fail you as well as braf if you are braf positive before you can do pd1. That's outside of a trial of course.

The gene targeted therapies are zelboraf or the tafinlar mekenist combo. However since you are NED they don't make sense to me. Also you have to be braf positive. Sunlight is a significant side affect.

yervoy is given via iv every 3 weeks four times. If it works they might offer a maintenance dose. Opdivo is given every 2 weeks and keytruda is given every 3 weeks. There really is no limit to the amount of doses. I've been on them for over a year.

Thats pretty much the new stuff that I know of. It sounds like the doc is offering the best standard treatment he has. Now trials are vast and varied. Doing some stuff like yervoy now can exclude you from some trials. I'm really not sure what I would do in your shoes.

Artie

Sorry that you're back.  If it were me, I'd go for the ipi-nivolumab combo. 

Sorry that you're back.  If it were me, I'd go for the ipi-nivolumab combo. 

Sorry that you're back.  If it were me, I'd go for the ipi-nivolumab combo. 

Jessica:

Here is info I posted earlier this month for another poster re basic drugs available: 

Basic FDA approved treatment for melanoma these days are: 

1. BRAF inhibitors (oral medication) if your tumor is BRAF positive….usually combined with a MEK inhibitor to increase effect and decrease side effects.  [About 50% of melanoma tumors are BRAF positive and in that population these drugs illicit a miraculous 70-80% response rate.  Sadly, it is often a short lived response with tumors working around the drug in 7-9 months…though there are remarkable exceptions and patients who have done well on the drugs for years!! Plus, the addition of a MEKi and changes in dosing schedules is extending the time these drugs are effective as well.  They are very important for patients who need rapid reduction of disease burden before surgery or going on to immunotherapy.]

2.  Immunotherapy: Yervoy/ipilimumab [response rate of about 20%], anti-PD1 (2 products:  nivolumab/Opdivo, pembrolizumab/Keytruda) [response rate of 30-40%], IL2 (tough med, requires hospitalization while it is administered, often used in conjunction with TIL) [response rate of about 10%], interferon [low response rate with no evidence to support that extends the life of those who take it].

One catch:  FDA approval of these drugs (except interferon and IL2) is for patients who are stage IV, or sometimes stage IIII with inoperable disease.  Additionally, anti-PD1 drugs are approved for patients only after they have tried and 'failed'  (ie experienced disease progression or had no positive response) to ipi and the BRAFi (if BRAF positive).

The best trial treatment going for melanoma with disease or without is an ipi/nivo combo.  A study of Stage IV folks on the combo had a 45% response rate and better than 70% 2 year survival.  It does come with a rather high side effect rate given the two meds.  Here is a link to a post I wrote about its use as an adjuvant treatment: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/ipi-vs-nivo-trial-as-adjuvant-for-stage.html

That particular posted was NED at Stage 3a.  However, as a now Stage IV patient, though you are currently rendered NED, I am pretty sure that your qualify for these drugs as noted.  As to whether or not to seek treatment, given your NED status, is a personal decision.  Some watch and wait, saving systemic treatment for later.  However, immunotherapies work best when there is the lowest disease burden.  Researchers are coming to believe that treating sooner, rather than later, will turn out to be best.  Artie, makes a very important point, however.  Cost vs benefit.  If you have melanoma everywhere, the risk of side effects vs the obvious side effects of no treatment is very clear.  When you have melanoma only microscopically…side effect risks are a bit more cloudy.

Here is some data on the adjuvant ipi/nivo trial:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/ipi-vs-nivo-trial-as-adjuvant-for-stage.html

My personal background is a bit like yours.  Original lesion = 2003 with a positive node.  (no treatment as there was none other than interferon which I declined)  Another skin lesion in 2007, negative node.  (no treatment…as the same was true)  Mets to lung, brain and tonsil in 2010.  SRS to brain.  Top lobe of right lung removed along with tonsil.  Started Nivo NED trial at end of 2010.  Took drug for 2 1/2 years per trial protocol.  Remain NED today.  Here's the official report from my trial and fellow ratties:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/my-nivo-opdivo-trial-first-dose-4-years.html

Hope this helps.  I wish you my best.  Celeste

Jessica:

Here is info I posted earlier this month for another poster re basic drugs available: 

Basic FDA approved treatment for melanoma these days are: 

1. BRAF inhibitors (oral medication) if your tumor is BRAF positive….usually combined with a MEK inhibitor to increase effect and decrease side effects.  [About 50% of melanoma tumors are BRAF positive and in that population these drugs illicit a miraculous 70-80% response rate.  Sadly, it is often a short lived response with tumors working around the drug in 7-9 months…though there are remarkable exceptions and patients who have done well on the drugs for years!! Plus, the addition of a MEKi and changes in dosing schedules is extending the time these drugs are effective as well.  They are very important for patients who need rapid reduction of disease burden before surgery or going on to immunotherapy.]

2.  Immunotherapy: Yervoy/ipilimumab [response rate of about 20%], anti-PD1 (2 products:  nivolumab/Opdivo, pembrolizumab/Keytruda) [response rate of 30-40%], IL2 (tough med, requires hospitalization while it is administered, often used in conjunction with TIL) [response rate of about 10%], interferon [low response rate with no evidence to support that extends the life of those who take it].

One catch:  FDA approval of these drugs (except interferon and IL2) is for patients who are stage IV, or sometimes stage IIII with inoperable disease.  Additionally, anti-PD1 drugs are approved for patients only after they have tried and 'failed'  (ie experienced disease progression or had no positive response) to ipi and the BRAFi (if BRAF positive).

The best trial treatment going for melanoma with disease or without is an ipi/nivo combo.  A study of Stage IV folks on the combo had a 45% response rate and better than 70% 2 year survival.  It does come with a rather high side effect rate given the two meds.  Here is a link to a post I wrote about its use as an adjuvant treatment: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/ipi-vs-nivo-trial-as-adjuvant-for-stage.html

That particular posted was NED at Stage 3a.  However, as a now Stage IV patient, though you are currently rendered NED, I am pretty sure that your qualify for these drugs as noted.  As to whether or not to seek treatment, given your NED status, is a personal decision.  Some watch and wait, saving systemic treatment for later.  However, immunotherapies work best when there is the lowest disease burden.  Researchers are coming to believe that treating sooner, rather than later, will turn out to be best.  Artie, makes a very important point, however.  Cost vs benefit.  If you have melanoma everywhere, the risk of side effects vs the obvious side effects of no treatment is very clear.  When you have melanoma only microscopically…side effect risks are a bit more cloudy.

Here is some data on the adjuvant ipi/nivo trial:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/ipi-vs-nivo-trial-as-adjuvant-for-stage.html

My personal background is a bit like yours.  Original lesion = 2003 with a positive node.  (no treatment as there was none other than interferon which I declined)  Another skin lesion in 2007, negative node.  (no treatment…as the same was true)  Mets to lung, brain and tonsil in 2010.  SRS to brain.  Top lobe of right lung removed along with tonsil.  Started Nivo NED trial at end of 2010.  Took drug for 2 1/2 years per trial protocol.  Remain NED today.  Here's the official report from my trial and fellow ratties:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/my-nivo-opdivo-trial-first-dose-4-years.html

Hope this helps.  I wish you my best.  Celeste

Jessica:

Here is info I posted earlier this month for another poster re basic drugs available: 

Basic FDA approved treatment for melanoma these days are: 

1. BRAF inhibitors (oral medication) if your tumor is BRAF positive….usually combined with a MEK inhibitor to increase effect and decrease side effects.  [About 50% of melanoma tumors are BRAF positive and in that population these drugs illicit a miraculous 70-80% response rate.  Sadly, it is often a short lived response with tumors working around the drug in 7-9 months…though there are remarkable exceptions and patients who have done well on the drugs for years!! Plus, the addition of a MEKi and changes in dosing schedules is extending the time these drugs are effective as well.  They are very important for patients who need rapid reduction of disease burden before surgery or going on to immunotherapy.]

2.  Immunotherapy: Yervoy/ipilimumab [response rate of about 20%], anti-PD1 (2 products:  nivolumab/Opdivo, pembrolizumab/Keytruda) [response rate of 30-40%], IL2 (tough med, requires hospitalization while it is administered, often used in conjunction with TIL) [response rate of about 10%], interferon [low response rate with no evidence to support that extends the life of those who take it].

One catch:  FDA approval of these drugs (except interferon and IL2) is for patients who are stage IV, or sometimes stage IIII with inoperable disease.  Additionally, anti-PD1 drugs are approved for patients only after they have tried and 'failed'  (ie experienced disease progression or had no positive response) to ipi and the BRAFi (if BRAF positive).

The best trial treatment going for melanoma with disease or without is an ipi/nivo combo.  A study of Stage IV folks on the combo had a 45% response rate and better than 70% 2 year survival.  It does come with a rather high side effect rate given the two meds.  Here is a link to a post I wrote about its use as an adjuvant treatment: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/ipi-vs-nivo-trial-as-adjuvant-for-stage.html

That particular posted was NED at Stage 3a.  However, as a now Stage IV patient, though you are currently rendered NED, I am pretty sure that your qualify for these drugs as noted.  As to whether or not to seek treatment, given your NED status, is a personal decision.  Some watch and wait, saving systemic treatment for later.  However, immunotherapies work best when there is the lowest disease burden.  Researchers are coming to believe that treating sooner, rather than later, will turn out to be best.  Artie, makes a very important point, however.  Cost vs benefit.  If you have melanoma everywhere, the risk of side effects vs the obvious side effects of no treatment is very clear.  When you have melanoma only microscopically…side effect risks are a bit more cloudy.

Here is some data on the adjuvant ipi/nivo trial:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/ipi-vs-nivo-trial-as-adjuvant-for-stage.html

My personal background is a bit like yours.  Original lesion = 2003 with a positive node.  (no treatment as there was none other than interferon which I declined)  Another skin lesion in 2007, negative node.  (no treatment…as the same was true)  Mets to lung, brain and tonsil in 2010.  SRS to brain.  Top lobe of right lung removed along with tonsil.  Started Nivo NED trial at end of 2010.  Took drug for 2 1/2 years per trial protocol.  Remain NED today.  Here's the official report from my trial and fellow ratties:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/my-nivo-opdivo-trial-first-dose-4-years.html

Hope this helps.  I wish you my best.  Celeste

Jessica,

Not sure where you are located but the University of Virginia has 3 adjuvant trials that you would probably qualify for.  Can't remember the specifics now but if you are anywhere near VA and/or have an interest let me know and I'll find the info and send you a contact.

Brian

Jessica,

Not sure where you are located but the University of Virginia has 3 adjuvant trials that you would probably qualify for.  Can't remember the specifics now but if you are anywhere near VA and/or have an interest let me know and I'll find the info and send you a contact.

Brian

Jessica,

Not sure where you are located but the University of Virginia has 3 adjuvant trials that you would probably qualify for.  Can't remember the specifics now but if you are anywhere near VA and/or have an interest let me know and I'll find the info and send you a contact.

Brian

My husband had 1 met in his lung removed in March 2013. No further treatment and he remains NED. 

My husband had 1 met in his lung removed in March 2013. No further treatment and he remains NED. 

My husband had 1 met in his lung removed in March 2013. No further treatment and he remains NED.