Stage III – help with treatment decision

Pembro is a great choice. Ipi/Nivo combo would be the other good choice. You'd be less likely to get any serious side effects from Pembro compared to the combo.. but there's no guarantee either way what kind and how many side effects you may get since we all react differently. Sounds like you're in good hands, sorry you have to be back in this crazy melanoma world.

Pembro is a great choice. Ipi/Nivo combo would be the other good choice. You'd be less likely to get any serious side effects from Pembro compared to the combo.. but there's no guarantee either way what kind and how many side effects you may get since we all react differently. Sounds like you're in good hands, sorry you have to be back in this crazy melanoma world.

Pembro is a great choice. Ipi/Nivo combo would be the other good choice. You'd be less likely to get any serious side effects from Pembro compared to the combo.. but there's no guarantee either way what kind and how many side effects you may get since we all react differently. Sounds like you're in good hands, sorry you have to be back in this crazy melanoma world.

Hi,

I had a large positive node in my groin. Pet scan said negative for pelvis .. But had pelvic and groin clearance and they found further positive node in my pelvis on surgery. So yes, think you are right to be looking at systemic therapy. In a way  I think you could look at what drugs are approved in your healthcare system. IPI nivo as a combo would be more aggressive with better response rates but has more side effects ..and are more severe on average. Being Braf positive even if pembro did not do the trick you could chose to use the Braf drugs to reduce tumour burden and get in control then swap to IPI nivo later ? 

As always good to be treated by melanoma specialists familiar with the drugs and side effects if at all possible. Hope all goes well for you and sorry you are dealing with all of this.

Best wishes

Deb

Hi,

I had a large positive node in my groin. Pet scan said negative for pelvis .. But had pelvic and groin clearance and they found further positive node in my pelvis on surgery. So yes, think you are right to be looking at systemic therapy. In a way  I think you could look at what drugs are approved in your healthcare system. IPI nivo as a combo would be more aggressive with better response rates but has more side effects ..and are more severe on average. Being Braf positive even if pembro did not do the trick you could chose to use the Braf drugs to reduce tumour burden and get in control then swap to IPI nivo later ? 

As always good to be treated by melanoma specialists familiar with the drugs and side effects if at all possible. Hope all goes well for you and sorry you are dealing with all of this.

Best wishes

Deb

Hi,

I had a large positive node in my groin. Pet scan said negative for pelvis .. But had pelvic and groin clearance and they found further positive node in my pelvis on surgery. So yes, think you are right to be looking at systemic therapy. In a way  I think you could look at what drugs are approved in your healthcare system. IPI nivo as a combo would be more aggressive with better response rates but has more side effects ..and are more severe on average. Being Braf positive even if pembro did not do the trick you could chose to use the Braf drugs to reduce tumour burden and get in control then swap to IPI nivo later ? 

As always good to be treated by melanoma specialists familiar with the drugs and side effects if at all possible. Hope all goes well for you and sorry you are dealing with all of this.

Best wishes

Deb

agree with Jenn and Deb. Good sign that your doctors are offering pembro, makes sense. If you want to be "difficult" you may want to ask them why they prefer pembro and not ipi/nivo, just for information.

i was put onto ipi early on but had side effects so lost the ipi/nivo option and am on pembro which seems to be working (hoping, some good signs), so i like pembro but most here go for ipi/nivo where the numbers seem to be better though i am not sure this is definitive

seems you are in good hands and this is a good plan

good luck, mark

agree with Jenn and Deb. Good sign that your doctors are offering pembro, makes sense. If you want to be "difficult" you may want to ask them why they prefer pembro and not ipi/nivo, just for information.

i was put onto ipi early on but had side effects so lost the ipi/nivo option and am on pembro which seems to be working (hoping, some good signs), so i like pembro but most here go for ipi/nivo where the numbers seem to be better though i am not sure this is definitive

seems you are in good hands and this is a good plan

good luck, mark

If you are still being classified as Stage III, and being offered Pembro… I personally would pounce on it. Yes, statistically, the Ipi/Nivo combo has higher response rates at this point, but also higher incidence of adverse side effects. And unless I am mistaken, the combo is only available to stage III patients as a trial… unless one is "stage III unresectable". Perhaps someone can correct me if that is no longer the latest info. With three positive nodes, Pembro sounds like a really good option. BRAF meds could be used if the Pembro fails you, or you end up with further metastasis. Although, those BRAF drugs could pretty rapidly wipe out those positive nodes and leave you NED once again. The big juicy question there, would be how long you would remain NED before having to take the meds again, or move onto an immunotheraputic agent, due to mutation. Might be a grand loooong time… might be a few months. There definitely is no perfect option, or "more right" answer. 

If you are still being classified as Stage III, and being offered Pembro… I personally would pounce on it. Yes, statistically, the Ipi/Nivo combo has higher response rates at this point, but also higher incidence of adverse side effects. And unless I am mistaken, the combo is only available to stage III patients as a trial… unless one is "stage III unresectable". Perhaps someone can correct me if that is no longer the latest info. With three positive nodes, Pembro sounds like a really good option. BRAF meds could be used if the Pembro fails you, or you end up with further metastasis. Although, those BRAF drugs could pretty rapidly wipe out those positive nodes and leave you NED once again. The big juicy question there, would be how long you would remain NED before having to take the meds again, or move onto an immunotheraputic agent, due to mutation. Might be a grand loooong time… might be a few months. There definitely is no perfect option, or "more right" answer. 

Dear Anon,

It is certainly a challenge when it all comes down to your chance and therefore your choice.

I have no individual treatment opinion for you…………..I can however offer some decision making tools that have worked for me as a Stage IV patient of some years.

Just like you, melanoma has waited around a while before it came back to bite me.

Just like you, over that time treatments and trials  are new and emerging that can be confounding to evaluate and make sense of.

Here is what I did and still do.

Take a piece of paper and pen/pencil.  Do not do this on a computer….it is not the same.

Put a title of one treatment option and draw a line down the page, then draw another line down the middle of that line…………one side is why yes to do this and on the other side is why no.  Assign a number to each yes or no.

Put up a title of the next treatment option and do the same thing.

Put up another title and keep going.

Now, add up the number in each treatment category , plus and minus, from top to bottom, left to right,  and see what you come up with.

Doing this has always helped me sort out emotion and fear and helped me reason  my way through making the best decision for me, and as a result, being confident that I made the right decision that I can stand by, advocate for and believe in.

Just sharing some of my coping skills over the years.  Take it for what you will.

Bottom line, it is STILL your chance and as such your CHOCE……..no matter how you go about it.

Cheers,

Charlie S

Dear Anon,

It is certainly a challenge when it all comes down to your chance and therefore your choice.

I have no individual treatment opinion for you…………..I can however offer some decision making tools that have worked for me as a Stage IV patient of some years.

Just like you, melanoma has waited around a while before it came back to bite me.

Just like you, over that time treatments and trials  are new and emerging that can be confounding to evaluate and make sense of.

Here is what I did and still do.

Take a piece of paper and pen/pencil.  Do not do this on a computer….it is not the same.

Put a title of one treatment option and draw a line down the page, then draw another line down the middle of that line…………one side is why yes to do this and on the other side is why no.  Assign a number to each yes or no.

Put up a title of the next treatment option and do the same thing.

Put up another title and keep going.

Now, add up the number in each treatment category , plus and minus, from top to bottom, left to right,  and see what you come up with.

Doing this has always helped me sort out emotion and fear and helped me reason  my way through making the best decision for me, and as a result, being confident that I made the right decision that I can stand by, advocate for and believe in.

Just sharing some of my coping skills over the years.  Take it for what you will.

Bottom line, it is STILL your chance and as such your CHOCE……..no matter how you go about it.

Cheers,

Charlie S

I am also stage III BRAF positive. My doctor decided to put me on targeted therapy – get some mileage out of that, and will then switch me to pembro for "maintenance" (at least that's the plan now).  I had a very large and active node in my groin, and results have been very fast. 

I did have one infusion of ipi/nivo while we waited for the BRAF results – help "rev" the immune system.  After one infusion I developed pancreatitis. there is starting to be good clinical data on sequencing immunotherapy and targeted therapy. 

If you do pembro first, you should ask about the "what's next" options and why.  We all need to keep as many options as open as possible 🙂

I am also stage III BRAF positive. My doctor decided to put me on targeted therapy – get some mileage out of that, and will then switch me to pembro for "maintenance" (at least that's the plan now).  I had a very large and active node in my groin, and results have been very fast. 

I did have one infusion of ipi/nivo while we waited for the BRAF results – help "rev" the immune system.  After one infusion I developed pancreatitis. there is starting to be good clinical data on sequencing immunotherapy and targeted therapy. 

If you do pembro first, you should ask about the "what's next" options and why.  We all need to keep as many options as open as possible 🙂

Most folks here know my story…but I will repeat it as it may be informative to your situation.

I was Stage IIIB in 2003 with a very thin primary on my right upper back and one positive node to my right axillae.  I had a WLE and CLND of the right axillae and no other treatment.  In 2007 I had a second primary to my left forearm, no positive nodes, but a CLND to my left axillae.  In 2010 I had lung, brain and a tonsilar mets in rapid succession.  I had the right upper lobe of my lung removed.  The brain tumor zapped with SRS.  Surgery to my right tonsil.  In December I was lucky to find an adjuvant Nivolumab (Opdivo) trial for NED (since that was my state after surgery and radiation) Stage IV patients.  I took nivo for 2 1/2 years…and have been NED ever since.  My last treatment was in June of 2013.  Here's one of my last reports about me:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/and-then-theres-me.html

Here is the published report on me and my peeps from my study: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/cest-moi-results-from-33-raties-in-my.html

Melanoma, just like much in life, is personal.  I wish you well in what you decide.  Celeste

Most folks here know my story…but I will repeat it as it may be informative to your situation.

I was Stage IIIB in 2003 with a very thin primary on my right upper back and one positive node to my right axillae.  I had a WLE and CLND of the right axillae and no other treatment.  In 2007 I had a second primary to my left forearm, no positive nodes, but a CLND to my left axillae.  In 2010 I had lung, brain and a tonsilar mets in rapid succession.  I had the right upper lobe of my lung removed.  The brain tumor zapped with SRS.  Surgery to my right tonsil.  In December I was lucky to find an adjuvant Nivolumab (Opdivo) trial for NED (since that was my state after surgery and radiation) Stage IV patients.  I took nivo for 2 1/2 years…and have been NED ever since.  My last treatment was in June of 2013.  Here's one of my last reports about me:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/and-then-theres-me.html

Here is the published report on me and my peeps from my study: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/cest-moi-results-from-33-raties-in-my.html

Melanoma, just like much in life, is personal.  I wish you well in what you decide.  Celeste