Husband recently diagnosed with Stage IV

I remember the disbelief at hearing the stage 4 diagnosis! From nothing to stage 4 is such a shock and we always think the worst. 

Sounds like you are on the most effective treatment and so glad that the combo seems to work on the brain mets as well. 

I had the same thing in lung and was just so very relieved when the immunotherapy worked. However life just seems so much more tenuous forever after our diagnosis. I am sure it's harder for family members than even for us patients when you want to think about planning the future. But for us the positive results from treatments just made us live and love life all the more. And I really hope you have the same experience. My husband surprised me with a fabulous cruise in the queen mary 2. We went and watched a surf competition on the north shore of Oahu. I got back to work and toured to Asia and Europe with my orchestra. Life can be fabulous even after stage 4  and some pretty gruelling treatments. I hope you and your husband can enjoy your children and grandchildren and some time for you two together despite this diagnosis and treatment. I wish all the very best

anne-Louise 

I remember the disbelief at hearing the stage 4 diagnosis! From nothing to stage 4 is such a shock and we always think the worst. 

Sounds like you are on the most effective treatment and so glad that the combo seems to work on the brain mets as well. 

I had the same thing in lung and was just so very relieved when the immunotherapy worked. However life just seems so much more tenuous forever after our diagnosis. I am sure it's harder for family members than even for us patients when you want to think about planning the future. But for us the positive results from treatments just made us live and love life all the more. And I really hope you have the same experience. My husband surprised me with a fabulous cruise in the queen mary 2. We went and watched a surf competition on the north shore of Oahu. I got back to work and toured to Asia and Europe with my orchestra. Life can be fabulous even after stage 4  and some pretty gruelling treatments. I hope you and your husband can enjoy your children and grandchildren and some time for you two together despite this diagnosis and treatment. I wish all the very best

anne-Louise 

I remember the disbelief at hearing the stage 4 diagnosis! From nothing to stage 4 is such a shock and we always think the worst. 

Sounds like you are on the most effective treatment and so glad that the combo seems to work on the brain mets as well. 

I had the same thing in lung and was just so very relieved when the immunotherapy worked. However life just seems so much more tenuous forever after our diagnosis. I am sure it's harder for family members than even for us patients when you want to think about planning the future. But for us the positive results from treatments just made us live and love life all the more. And I really hope you have the same experience. My husband surprised me with a fabulous cruise in the queen mary 2. We went and watched a surf competition on the north shore of Oahu. I got back to work and toured to Asia and Europe with my orchestra. Life can be fabulous even after stage 4  and some pretty gruelling treatments. I hope you and your husband can enjoy your children and grandchildren and some time for you two together despite this diagnosis and treatment. I wish all the very best

anne-Louise 

Have you had a second opinion? I would highly recommend one and that you look into gamma knife radiation. My Mom was diagnosed with stage IV 3 years ago with brain mets. She had ipi and gamma knife radiation and has done very well.

Have you had a second opinion? I would highly recommend one and that you look into gamma knife radiation. My Mom was diagnosed with stage IV 3 years ago with brain mets. She had ipi and gamma knife radiation and has done very well.

Have you had a second opinion? I would highly recommend one and that you look into gamma knife radiation. My Mom was diagnosed with stage IV 3 years ago with brain mets. She had ipi and gamma knife radiation and has done very well.

Sorry to hear.  Agree that he is on the best available treatment.  Prednisone will not hinder the response.  Headache may be pituitary related, but make sure to request a brain MRI if he hasn't had one.

Sorry to hear.  Agree that he is on the best available treatment.  Prednisone will not hinder the response.  Headache may be pituitary related, but make sure to request a brain MRI if he hasn't had one.

Sorry to hear.  Agree that he is on the best available treatment.  Prednisone will not hinder the response.  Headache may be pituitary related, but make sure to request a brain MRI if he hasn't had one.

Some questions:  

Where are you being treated?  Melanoma is not a typical cancer and can't be treated by a general oncologist – you need someone who works with melanoma only.  You can find Melanoma Centers here https://www.melanoma.org/understand-melanoma/melanoma-treatment/treatment-center-finder

Can you get a second opinion?  Your insurance company should work with you on this.

Some hope:

There are many people in this group who were Stage IV and are currently NED (no evidence of disease).  I hope they will chime in with their experiences.

The initial diagnosis and aftermath are the worst!  Things will improve from here as you adapt to the treatments, the terminology, and the word 'cancer'.  

Come here often to read and post – it helps.

 

Fen

Some questions:  

Where are you being treated?  Melanoma is not a typical cancer and can't be treated by a general oncologist – you need someone who works with melanoma only.  You can find Melanoma Centers here https://www.melanoma.org/understand-melanoma/melanoma-treatment/treatment-center-finder

Can you get a second opinion?  Your insurance company should work with you on this.

Some hope:

There are many people in this group who were Stage IV and are currently NED (no evidence of disease).  I hope they will chime in with their experiences.

The initial diagnosis and aftermath are the worst!  Things will improve from here as you adapt to the treatments, the terminology, and the word 'cancer'.  

Come here often to read and post – it helps.

 

Fen

Some questions:  

Where are you being treated?  Melanoma is not a typical cancer and can't be treated by a general oncologist – you need someone who works with melanoma only.  You can find Melanoma Centers here https://www.melanoma.org/understand-melanoma/melanoma-treatment/treatment-center-finder

Can you get a second opinion?  Your insurance company should work with you on this.

Some hope:

There are many people in this group who were Stage IV and are currently NED (no evidence of disease).  I hope they will chime in with their experiences.

The initial diagnosis and aftermath are the worst!  Things will improve from here as you adapt to the treatments, the terminology, and the word 'cancer'.  

Come here often to read and post – it helps.

 

Fen

Hi there.  My Dad was diagnosed Stage IV a few months ago.  It is such a complete shock when you get the news.  Just like your husband, my Dad has no family history or anything on his skin.  He is a Redhead and I know that makes him more susceptible to Melanoma. My Dad had colon cancer last year, and then in June had a ct scan and the first melanoma was found on his lung, then spleen and then the brain. I would HIGHLY suggest that you consult with someone who specializes in the Gamma Knife.  If you can get those suckers zapped before they spread, it would be very beneficial.  My Dad started with just 8, but ended up having 15.  

You have come to the right place for information and support, these people on here are fantastic!

Hang in there, there is lots of Hope!!!!

Hi there.  My Dad was diagnosed Stage IV a few months ago.  It is such a complete shock when you get the news.  Just like your husband, my Dad has no family history or anything on his skin.  He is a Redhead and I know that makes him more susceptible to Melanoma. My Dad had colon cancer last year, and then in June had a ct scan and the first melanoma was found on his lung, then spleen and then the brain. I would HIGHLY suggest that you consult with someone who specializes in the Gamma Knife.  If you can get those suckers zapped before they spread, it would be very beneficial.  My Dad started with just 8, but ended up having 15.  

You have come to the right place for information and support, these people on here are fantastic!

Hang in there, there is lots of Hope!!!!

Hi there.  My Dad was diagnosed Stage IV a few months ago.  It is such a complete shock when you get the news.  Just like your husband, my Dad has no family history or anything on his skin.  He is a Redhead and I know that makes him more susceptible to Melanoma. My Dad had colon cancer last year, and then in June had a ct scan and the first melanoma was found on his lung, then spleen and then the brain. I would HIGHLY suggest that you consult with someone who specializes in the Gamma Knife.  If you can get those suckers zapped before they spread, it would be very beneficial.  My Dad started with just 8, but ended up having 15.  

You have come to the right place for information and support, these people on here are fantastic!

Hang in there, there is lots of Hope!!!!

Sorry for all that you and your husband have been suddenly dealing with.  I was first diagnosed with melanoma (Stage IIIB) in 2003 and advanced to Stage IV with lung and brain mets in 2010.  However, after surgery on my lung, SRS (stereotactic radiation on my brain met) and participation in a 2 1/2 year trial with nivo, I remain NED (no evidence of disease)!!  So, there is HOPE!!!  (My favorite 4 letter word!) The combo of ipi/nivo has even better response rates than nivo alone!!!  However, all the immunotherapy treatments do even better when combined with radiation.  Here is a link with many articles linked within confirming that: 

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/one-more-timebetter-responses-when.html

So with my own personal experience, as well as data we have now accumulated, like the others, if I were in your husband's shoes I would be working to add SRS to his brain mets in COMBINATION with the ipi/nivo he is already on.  WBR (whole brain radiation) is not recommended most of the time in melanoma, and 3 lesions within his brain can easily be dealt with using SRS.  There are folks on this board who have successfully zapped brain mets numbering in the teens.

And, yes…you have certainly landed in a foreign land with it own language.  Here is a little post I put together (some of it silly) but lots of it with basic acronyms and their definitions that you will (and likely have already) encounter in melanoma world.

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/melanoma-abbreviations-and-random.html

Hope this helps.  Keep asking questions.  This forum if filled with amazing folks…most generous in their knowledge and support.

Yours, Celeste

Sorry for all that you and your husband have been suddenly dealing with.  I was first diagnosed with melanoma (Stage IIIB) in 2003 and advanced to Stage IV with lung and brain mets in 2010.  However, after surgery on my lung, SRS (stereotactic radiation on my brain met) and participation in a 2 1/2 year trial with nivo, I remain NED (no evidence of disease)!!  So, there is HOPE!!!  (My favorite 4 letter word!) The combo of ipi/nivo has even better response rates than nivo alone!!!  However, all the immunotherapy treatments do even better when combined with radiation.  Here is a link with many articles linked within confirming that: 

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/one-more-timebetter-responses-when.html

So with my own personal experience, as well as data we have now accumulated, like the others, if I were in your husband's shoes I would be working to add SRS to his brain mets in COMBINATION with the ipi/nivo he is already on.  WBR (whole brain radiation) is not recommended most of the time in melanoma, and 3 lesions within his brain can easily be dealt with using SRS.  There are folks on this board who have successfully zapped brain mets numbering in the teens.

And, yes…you have certainly landed in a foreign land with it own language.  Here is a little post I put together (some of it silly) but lots of it with basic acronyms and their definitions that you will (and likely have already) encounter in melanoma world.

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/melanoma-abbreviations-and-random.html

Hope this helps.  Keep asking questions.  This forum if filled with amazing folks…most generous in their knowledge and support.

Yours, Celeste

Sorry for all that you and your husband have been suddenly dealing with.  I was first diagnosed with melanoma (Stage IIIB) in 2003 and advanced to Stage IV with lung and brain mets in 2010.  However, after surgery on my lung, SRS (stereotactic radiation on my brain met) and participation in a 2 1/2 year trial with nivo, I remain NED (no evidence of disease)!!  So, there is HOPE!!!  (My favorite 4 letter word!) The combo of ipi/nivo has even better response rates than nivo alone!!!  However, all the immunotherapy treatments do even better when combined with radiation.  Here is a link with many articles linked within confirming that: 

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/one-more-timebetter-responses-when.html

So with my own personal experience, as well as data we have now accumulated, like the others, if I were in your husband's shoes I would be working to add SRS to his brain mets in COMBINATION with the ipi/nivo he is already on.  WBR (whole brain radiation) is not recommended most of the time in melanoma, and 3 lesions within his brain can easily be dealt with using SRS.  There are folks on this board who have successfully zapped brain mets numbering in the teens.

And, yes…you have certainly landed in a foreign land with it own language.  Here is a little post I put together (some of it silly) but lots of it with basic acronyms and their definitions that you will (and likely have already) encounter in melanoma world.

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/melanoma-abbreviations-and-random.html

Hope this helps.  Keep asking questions.  This forum if filled with amazing folks…most generous in their knowledge and support.

Yours, Celeste

Hi there,

I would like to add "ditto" to all posts above.  Adding a little more to the idea about traveling to see a melanoma specialist.  I live in a place with severe geographic isolation, and not a single mel specialist.  After progressing through all the "standard of care" steps, my oncologist, God bless him, just gave me a blank stare and said insurance would not cover further treatments and he just did not know what to do.  Luckily I had found this forum and got the advice about the absolute, non-negotiable need to see a specialist.  I bit the bullet on the time and money needed but the difference was night and day.  My specialist seems to have a never-ending supply of tools, and options.  I feel like I owe my life to this decision.  As absurd as it sounds, there has never been a better time to get mel.  Right now your husband is being treated with the most successful drug (combo) that has been developed and with radiation added he may whip this thing and be done.  But mel is an insidious beast who is always looking for a backdoor.  I get my local oncologist to treat me under the advice and direction of the specialist.  Trials are another matter but consider the stakes. You can have both worlds, but don't underestimate the importance of seeking out the best talent available and the sooner the better.

Gary

Hi there,

I would like to add "ditto" to all posts above.  Adding a little more to the idea about traveling to see a melanoma specialist.  I live in a place with severe geographic isolation, and not a single mel specialist.  After progressing through all the "standard of care" steps, my oncologist, God bless him, just gave me a blank stare and said insurance would not cover further treatments and he just did not know what to do.  Luckily I had found this forum and got the advice about the absolute, non-negotiable need to see a specialist.  I bit the bullet on the time and money needed but the difference was night and day.  My specialist seems to have a never-ending supply of tools, and options.  I feel like I owe my life to this decision.  As absurd as it sounds, there has never been a better time to get mel.  Right now your husband is being treated with the most successful drug (combo) that has been developed and with radiation added he may whip this thing and be done.  But mel is an insidious beast who is always looking for a backdoor.  I get my local oncologist to treat me under the advice and direction of the specialist.  Trials are another matter but consider the stakes. You can have both worlds, but don't underestimate the importance of seeking out the best talent available and the sooner the better.

Gary

Hi there,

I would like to add "ditto" to all posts above.  Adding a little more to the idea about traveling to see a melanoma specialist.  I live in a place with severe geographic isolation, and not a single mel specialist.  After progressing through all the "standard of care" steps, my oncologist, God bless him, just gave me a blank stare and said insurance would not cover further treatments and he just did not know what to do.  Luckily I had found this forum and got the advice about the absolute, non-negotiable need to see a specialist.  I bit the bullet on the time and money needed but the difference was night and day.  My specialist seems to have a never-ending supply of tools, and options.  I feel like I owe my life to this decision.  As absurd as it sounds, there has never been a better time to get mel.  Right now your husband is being treated with the most successful drug (combo) that has been developed and with radiation added he may whip this thing and be done.  But mel is an insidious beast who is always looking for a backdoor.  I get my local oncologist to treat me under the advice and direction of the specialist.  Trials are another matter but consider the stakes. You can have both worlds, but don't underestimate the importance of seeking out the best talent available and the sooner the better.

Gary

Hello,

Sorry you are having to deal with all of this.

From the disease found at this point your husband may have had an unknown primary melanoma that has regressed.

The usual progression with melanoma is from a lesion on the skin to the nearest set of lymph nodes and after that to more distant sites- more commonly lung , liver and brain. However , melanoma does not always play by the rules and can show up in unexpected places.

Treatment with ipi nivo sounds like a good option. Did your husbands headaches commence prior to treatment ? Headaches can also be a symptom of pituitary damage from ipi but Ithink this would be unusual to appear after the first infusion, anything that changes needs reporting.

Steroids will act as an anti inflammatory- but if the brain mets are symptomatic- you might want to consider treatment-  Gamma knife etc. Also if the melanoma is "injured" you may benefit from this sensitizing the rest of the immune system to the invader and help it to identify and destroy the various lesions elsewhere in the body.- so potentially a double win….

Steroids are often used to tone down the immune system when it has been ramped up by ipi- and there is evidence to show that responses can still be good – but if steroids are needed the docs seem to like the need for them to be on a low level before hitting you again with the next dose of ipi

Main thing is if your husband has any side effects of any magnitude these shoul be reported promptly as they are easier to treat if caught early. The other message seem to be that you should not downplay symptoms in order to get more doses- if your immune system is ramped up and onthe attack the drug has done its job and no need to "over rev " it. There are lots of people with responses to the drug that did not make it through the full four doses of ipi.

Our world has also been turned upside down. These drugs give hope and if you do get a complete response – the duration of this hasyet to be determined…. It has to be one day at a time for now and taking pleasure where you can find it.. 

Best wishes to you and the family

Deb

Ps also on ipi nivo- next dose due in 10 days….

Hello,

Sorry you are having to deal with all of this.

From the disease found at this point your husband may have had an unknown primary melanoma that has regressed.

The usual progression with melanoma is from a lesion on the skin to the nearest set of lymph nodes and after that to more distant sites- more commonly lung , liver and brain. However , melanoma does not always play by the rules and can show up in unexpected places.

Treatment with ipi nivo sounds like a good option. Did your husbands headaches commence prior to treatment ? Headaches can also be a symptom of pituitary damage from ipi but Ithink this would be unusual to appear after the first infusion, anything that changes needs reporting.

Steroids will act as an anti inflammatory- but if the brain mets are symptomatic- you might want to consider treatment-  Gamma knife etc. Also if the melanoma is "injured" you may benefit from this sensitizing the rest of the immune system to the invader and help it to identify and destroy the various lesions elsewhere in the body.- so potentially a double win….

Steroids are often used to tone down the immune system when it has been ramped up by ipi- and there is evidence to show that responses can still be good – but if steroids are needed the docs seem to like the need for them to be on a low level before hitting you again with the next dose of ipi

Main thing is if your husband has any side effects of any magnitude these shoul be reported promptly as they are easier to treat if caught early. The other message seem to be that you should not downplay symptoms in order to get more doses- if your immune system is ramped up and onthe attack the drug has done its job and no need to "over rev " it. There are lots of people with responses to the drug that did not make it through the full four doses of ipi.

Our world has also been turned upside down. These drugs give hope and if you do get a complete response – the duration of this hasyet to be determined…. It has to be one day at a time for now and taking pleasure where you can find it.. 

Best wishes to you and the family

Deb

Ps also on ipi nivo- next dose due in 10 days….

Hello,

Sorry you are having to deal with all of this.

From the disease found at this point your husband may have had an unknown primary melanoma that has regressed.

The usual progression with melanoma is from a lesion on the skin to the nearest set of lymph nodes and after that to more distant sites- more commonly lung , liver and brain. However , melanoma does not always play by the rules and can show up in unexpected places.

Treatment with ipi nivo sounds like a good option. Did your husbands headaches commence prior to treatment ? Headaches can also be a symptom of pituitary damage from ipi but Ithink this would be unusual to appear after the first infusion, anything that changes needs reporting.

Steroids will act as an anti inflammatory- but if the brain mets are symptomatic- you might want to consider treatment-  Gamma knife etc. Also if the melanoma is "injured" you may benefit from this sensitizing the rest of the immune system to the invader and help it to identify and destroy the various lesions elsewhere in the body.- so potentially a double win….

Steroids are often used to tone down the immune system when it has been ramped up by ipi- and there is evidence to show that responses can still be good – but if steroids are needed the docs seem to like the need for them to be on a low level before hitting you again with the next dose of ipi

Main thing is if your husband has any side effects of any magnitude these shoul be reported promptly as they are easier to treat if caught early. The other message seem to be that you should not downplay symptoms in order to get more doses- if your immune system is ramped up and onthe attack the drug has done its job and no need to "over rev " it. There are lots of people with responses to the drug that did not make it through the full four doses of ipi.

Our world has also been turned upside down. These drugs give hope and if you do get a complete response – the duration of this hasyet to be determined…. It has to be one day at a time for now and taking pleasure where you can find it.. 

Best wishes to you and the family

Deb

Ps also on ipi nivo- next dose due in 10 days….

I'm the first poster who recommended gamma knife radiation into the mix. My recommendation has not changed.

My 2 cents might not be worth a lot,  nor every single poster since who all advocated for a melanoma specialist and gamma knife radiation (aka SRS), but I'd urge your husband to reconsider his decision. You don't know, until you know, what his chances are vs the absolutely devastating long-term affects his decision not to treat the brain mets could have. He has made a decision based on a percentage of people where the combo worked. It is not 100%. It is not better than the combo and gamma knife radiation combined.  There is still a huge chance that it won't get the brain mets, more could grow, or as a result of leaving it alone your husband can loose his cognitive abilities. – Memory, decision making skills, his behavior could all change…

If not for himself, he needs to think of you, your children and your grandchildren and at the least get the best information by seeing a specialist even IF he doesn't take their advice.

On another note, he should NOT be driving, especially with an untreated brain met. If anything, thing might change his mind. A treated brain met will get him back on the road. Untreated mets pose a danger to him and anyone around him and there isn't a neurologist alive that would say he can drive right now.  He should also be on keppra to prevent seizures, which if he has one WILL ensure he can't drive for 2 full years. – Car insurance companies will not cover claims if there is an accident under these circumstances. He has a medical condiditon that will void the policy.

Please seek a second opinion and reconsider gamma knife.

PS

My Mom has Stage IV melanoma, had 28 brain mets treated with gamma knife radiation and is almost NED (no evidence of disease). We never delayed treatment with gamma knife or had a second thought about it. She is 80 now sailed through gamma knife radiation and highly recommends not just second opinions (she had 4!) but getting the right treatment and that means finding a specialist. Melanoma is just too tricky to be left to most oncologists.

 

I'm the first poster who recommended gamma knife radiation into the mix. My recommendation has not changed.

My 2 cents might not be worth a lot,  nor every single poster since who all advocated for a melanoma specialist and gamma knife radiation (aka SRS), but I'd urge your husband to reconsider his decision. You don't know, until you know, what his chances are vs the absolutely devastating long-term affects his decision not to treat the brain mets could have. He has made a decision based on a percentage of people where the combo worked. It is not 100%. It is not better than the combo and gamma knife radiation combined.  There is still a huge chance that it won't get the brain mets, more could grow, or as a result of leaving it alone your husband can loose his cognitive abilities. – Memory, decision making skills, his behavior could all change…

If not for himself, he needs to think of you, your children and your grandchildren and at the least get the best information by seeing a specialist even IF he doesn't take their advice.

On another note, he should NOT be driving, especially with an untreated brain met. If anything, thing might change his mind. A treated brain met will get him back on the road. Untreated mets pose a danger to him and anyone around him and there isn't a neurologist alive that would say he can drive right now.  He should also be on keppra to prevent seizures, which if he has one WILL ensure he can't drive for 2 full years. – Car insurance companies will not cover claims if there is an accident under these circumstances. He has a medical condiditon that will void the policy.

Please seek a second opinion and reconsider gamma knife.

PS

My Mom has Stage IV melanoma, had 28 brain mets treated with gamma knife radiation and is almost NED (no evidence of disease). We never delayed treatment with gamma knife or had a second thought about it. She is 80 now sailed through gamma knife radiation and highly recommends not just second opinions (she had 4!) but getting the right treatment and that means finding a specialist. Melanoma is just too tricky to be left to most oncologists.

 

I'm the first poster who recommended gamma knife radiation into the mix. My recommendation has not changed.

My 2 cents might not be worth a lot,  nor every single poster since who all advocated for a melanoma specialist and gamma knife radiation (aka SRS), but I'd urge your husband to reconsider his decision. You don't know, until you know, what his chances are vs the absolutely devastating long-term affects his decision not to treat the brain mets could have. He has made a decision based on a percentage of people where the combo worked. It is not 100%. It is not better than the combo and gamma knife radiation combined.  There is still a huge chance that it won't get the brain mets, more could grow, or as a result of leaving it alone your husband can loose his cognitive abilities. – Memory, decision making skills, his behavior could all change…

If not for himself, he needs to think of you, your children and your grandchildren and at the least get the best information by seeing a specialist even IF he doesn't take their advice.

On another note, he should NOT be driving, especially with an untreated brain met. If anything, thing might change his mind. A treated brain met will get him back on the road. Untreated mets pose a danger to him and anyone around him and there isn't a neurologist alive that would say he can drive right now.  He should also be on keppra to prevent seizures, which if he has one WILL ensure he can't drive for 2 full years. – Car insurance companies will not cover claims if there is an accident under these circumstances. He has a medical condiditon that will void the policy.

Please seek a second opinion and reconsider gamma knife.

PS

My Mom has Stage IV melanoma, had 28 brain mets treated with gamma knife radiation and is almost NED (no evidence of disease). We never delayed treatment with gamma knife or had a second thought about it. She is 80 now sailed through gamma knife radiation and highly recommends not just second opinions (she had 4!) but getting the right treatment and that means finding a specialist. Melanoma is just too tricky to be left to most oncologists.