My husband just diagnosed with Stage 4 metastatic malignant melanoma – now what?

Hi Rita,

Sorry for all that you and your husband are dealing with.  I have been Stage IV since 2010 after lung and brain mets.  I have been dealing with melanoma since 2003.  You can do this!  You absolutely need a melanoma specialist…not just a general oncologist.  Period.  If you have that, great.  If not…do the best you can to find a resource.  Look at the thread by Jennycrn1, from 6/2 titled "Newly diagnosed stage 3a".  I posted a description of the best, most current treatments of melanoma to that thread on 6/3.  There were some caveats for her as she is stage III.  However, your husband qualifies for them all at stage IV.  Ask more questions as you need to.  This board is a wonderful resource.  Wishing you my best.  celeste

Hi Rita,

Sorry for all that you and your husband are dealing with.  I have been Stage IV since 2010 after lung and brain mets.  I have been dealing with melanoma since 2003.  You can do this!  You absolutely need a melanoma specialist…not just a general oncologist.  Period.  If you have that, great.  If not…do the best you can to find a resource.  Look at the thread by Jennycrn1, from 6/2 titled "Newly diagnosed stage 3a".  I posted a description of the best, most current treatments of melanoma to that thread on 6/3.  There were some caveats for her as she is stage III.  However, your husband qualifies for them all at stage IV.  Ask more questions as you need to.  This board is a wonderful resource.  Wishing you my best.  celeste

Hi Rita,

Sorry for all that you and your husband are dealing with.  I have been Stage IV since 2010 after lung and brain mets.  I have been dealing with melanoma since 2003.  You can do this!  You absolutely need a melanoma specialist…not just a general oncologist.  Period.  If you have that, great.  If not…do the best you can to find a resource.  Look at the thread by Jennycrn1, from 6/2 titled "Newly diagnosed stage 3a".  I posted a description of the best, most current treatments of melanoma to that thread on 6/3.  There were some caveats for her as she is stage III.  However, your husband qualifies for them all at stage IV.  Ask more questions as you need to.  This board is a wonderful resource.  Wishing you my best.  celeste

Hold off on the island getaway. There are so many options now that didn't exist when my husband was diagnosed in September 2013. He is NED now . He feels and looks great. He was 3c and "progressed" to stage 4 after his initial infusion of yervoy. It had metastasized to the liver which in old stats give you 4-6 months to live. He had ablation surgery in May 2014 and no further treatment. We know now that he had an "atypical" response to yervoy (ipi) but at the time it was devastating. 

Do not be afraid if they mention immunotherapy as a treatment along with surgery. The side effects are manageable . Look into clinical trials also. There are many people who post on this forum who have lived a very long time with melanoma. So. My advice is to keep in touch here. Stay positive. Try to see a melanoma specialist. We did not, but it has worked out okay for us since kaiser had a clinical trial for melanoma. Good luck and don't look at any stats on the Internet. They are outdated and will only get you depressed. 

Hold off on the island getaway. There are so many options now that didn't exist when my husband was diagnosed in September 2013. He is NED now . He feels and looks great. He was 3c and "progressed" to stage 4 after his initial infusion of yervoy. It had metastasized to the liver which in old stats give you 4-6 months to live. He had ablation surgery in May 2014 and no further treatment. We know now that he had an "atypical" response to yervoy (ipi) but at the time it was devastating. 

Do not be afraid if they mention immunotherapy as a treatment along with surgery. The side effects are manageable . Look into clinical trials also. There are many people who post on this forum who have lived a very long time with melanoma. So. My advice is to keep in touch here. Stay positive. Try to see a melanoma specialist. We did not, but it has worked out okay for us since kaiser had a clinical trial for melanoma. Good luck and don't look at any stats on the Internet. They are outdated and will only get you depressed. 

Hold off on the island getaway. There are so many options now that didn't exist when my husband was diagnosed in September 2013. He is NED now . He feels and looks great. He was 3c and "progressed" to stage 4 after his initial infusion of yervoy. It had metastasized to the liver which in old stats give you 4-6 months to live. He had ablation surgery in May 2014 and no further treatment. We know now that he had an "atypical" response to yervoy (ipi) but at the time it was devastating. 

Do not be afraid if they mention immunotherapy as a treatment along with surgery. The side effects are manageable . Look into clinical trials also. There are many people who post on this forum who have lived a very long time with melanoma. So. My advice is to keep in touch here. Stay positive. Try to see a melanoma specialist. We did not, but it has worked out okay for us since kaiser had a clinical trial for melanoma. Good luck and don't look at any stats on the Internet. They are outdated and will only get you depressed. 

Hi Rita, you have been given great advice about getting in touch with a melanoma specialist. Surgeons love to cute stuff out and Melanoma specialist like to give drugs and radiologist like to give radiation, with that being said look at the current survival data for Melanoma and you will find Immunotherapy is hands down the winner when it comes to keeping patients alive. I also have lung and Lymph node involvement on the right lung, which the Oncologist decided would be to dangerous to operate on. I have been part of the checkmate 67 trial (Immunotherapy) from Bristol Myer Squibb for 1.5 years now and doing fine. I like your idea of running off to an island somewhere, I have taken the family to Cuba and Disney in florida over the last year and had a great time. I must admit that two years ago I was pretty freaked for the first couple of months, during the what are we going to do stage of this disease. The choices that you have available today are truely amazing compared with two years ago. Wishing you the best!!! Ed 

Hi Rita, you have been given great advice about getting in touch with a melanoma specialist. Surgeons love to cute stuff out and Melanoma specialist like to give drugs and radiologist like to give radiation, with that being said look at the current survival data for Melanoma and you will find Immunotherapy is hands down the winner when it comes to keeping patients alive. I also have lung and Lymph node involvement on the right lung, which the Oncologist decided would be to dangerous to operate on. I have been part of the checkmate 67 trial (Immunotherapy) from Bristol Myer Squibb for 1.5 years now and doing fine. I like your idea of running off to an island somewhere, I have taken the family to Cuba and Disney in florida over the last year and had a great time. I must admit that two years ago I was pretty freaked for the first couple of months, during the what are we going to do stage of this disease. The choices that you have available today are truely amazing compared with two years ago. Wishing you the best!!! Ed 

Hi Rita, you have been given great advice about getting in touch with a melanoma specialist. Surgeons love to cute stuff out and Melanoma specialist like to give drugs and radiologist like to give radiation, with that being said look at the current survival data for Melanoma and you will find Immunotherapy is hands down the winner when it comes to keeping patients alive. I also have lung and Lymph node involvement on the right lung, which the Oncologist decided would be to dangerous to operate on. I have been part of the checkmate 67 trial (Immunotherapy) from Bristol Myer Squibb for 1.5 years now and doing fine. I like your idea of running off to an island somewhere, I have taken the family to Cuba and Disney in florida over the last year and had a great time. I must admit that two years ago I was pretty freaked for the first couple of months, during the what are we going to do stage of this disease. The choices that you have available today are truely amazing compared with two years ago. Wishing you the best!!! Ed 

Rita, I'm sorry for what you and your husband are going through. I remember very vividly being in a similar position last year when my dad was found to have bilateral lung mets and lymph nodes and soft tissue neck mets. He had surgery, did fantastic for a year, and now with recurrence we're looking at systemic treatment.

I think the hardest thing we went through last year was the ambiguity associated with Stage IV melanoma – it's a scary cancer, but what we have been slowly learning and are more accepting of now is that there is so much room for hope. You will see numbers indicating median survival of about a year with metastatic melanoma, but these really do have to be taken with a grain of salt, because there is so much variability and they often don't account for cutting edge treatments that are available. There are so many stories of people with Stage IV melanoma getting treatment and then living for decades and dying of other things.

So regarding the stats on survival – remember that your husband is an individual, not a statistic. They only mean so much and there is usually a lot more room for hope than they indicate.

There are brand new treatments, not yet FDA-approved, but still available to people through expanded access, with AMAZING outcomes! Which is why you need a melanoma specialist – treatment for this cancer is some of the newest medical technology out there. Sometimes surgery is a good first option, but if that is your recommendation, you can still get a second opinion from a melanoma specialist. 

Hang in there. This is a journey (albeit a pretty sh*tty one), not a finish line. 

Rita, I'm sorry for what you and your husband are going through. I remember very vividly being in a similar position last year when my dad was found to have bilateral lung mets and lymph nodes and soft tissue neck mets. He had surgery, did fantastic for a year, and now with recurrence we're looking at systemic treatment.

I think the hardest thing we went through last year was the ambiguity associated with Stage IV melanoma – it's a scary cancer, but what we have been slowly learning and are more accepting of now is that there is so much room for hope. You will see numbers indicating median survival of about a year with metastatic melanoma, but these really do have to be taken with a grain of salt, because there is so much variability and they often don't account for cutting edge treatments that are available. There are so many stories of people with Stage IV melanoma getting treatment and then living for decades and dying of other things.

So regarding the stats on survival – remember that your husband is an individual, not a statistic. They only mean so much and there is usually a lot more room for hope than they indicate.

There are brand new treatments, not yet FDA-approved, but still available to people through expanded access, with AMAZING outcomes! Which is why you need a melanoma specialist – treatment for this cancer is some of the newest medical technology out there. Sometimes surgery is a good first option, but if that is your recommendation, you can still get a second opinion from a melanoma specialist. 

Hang in there. This is a journey (albeit a pretty sh*tty one), not a finish line. 

Rita, I'm sorry for what you and your husband are going through. I remember very vividly being in a similar position last year when my dad was found to have bilateral lung mets and lymph nodes and soft tissue neck mets. He had surgery, did fantastic for a year, and now with recurrence we're looking at systemic treatment.

I think the hardest thing we went through last year was the ambiguity associated with Stage IV melanoma – it's a scary cancer, but what we have been slowly learning and are more accepting of now is that there is so much room for hope. You will see numbers indicating median survival of about a year with metastatic melanoma, but these really do have to be taken with a grain of salt, because there is so much variability and they often don't account for cutting edge treatments that are available. There are so many stories of people with Stage IV melanoma getting treatment and then living for decades and dying of other things.

So regarding the stats on survival – remember that your husband is an individual, not a statistic. They only mean so much and there is usually a lot more room for hope than they indicate.

There are brand new treatments, not yet FDA-approved, but still available to people through expanded access, with AMAZING outcomes! Which is why you need a melanoma specialist – treatment for this cancer is some of the newest medical technology out there. Sometimes surgery is a good first option, but if that is your recommendation, you can still get a second opinion from a melanoma specialist. 

Hang in there. This is a journey (albeit a pretty sh*tty one), not a finish line. 

At stage 4 I'm suprised they aren't already talking more about the medicines. The newer fda approved meds are of two types. The gene targeted meds of tafinlar mekenist combo. But he has to be braf positive. The other type is immunotherapy like yervoy and if that doesn't work and he's braf negative or the braf failed there is the better immunotherapy of pd1. Either keytruda or opdivo.

There are also clinical trials.

ive been on all the meds I mentioned plus the older braf called zelboraf. All the meds have technically failed me. Some stuff keeps growing and sometimes new stuff shows up. Although finally keytruda did slow things down. So I'm still here and on the 21st of this month will be 2 years since diagnosis. Do I feel as good as I did 2 years ago? No. The disease and radiation and meds have all taken their toll. So in my opinion if you want to get away for awhile do so but include a visit to one of the big melanoma places like memorial Sloan Kettering in New York or md anderson in Houston. See the doc and take in the sites. That would be the getaway I recomend.

Artie

At stage 4 I'm suprised they aren't already talking more about the medicines. The newer fda approved meds are of two types. The gene targeted meds of tafinlar mekenist combo. But he has to be braf positive. The other type is immunotherapy like yervoy and if that doesn't work and he's braf negative or the braf failed there is the better immunotherapy of pd1. Either keytruda or opdivo.

There are also clinical trials.

ive been on all the meds I mentioned plus the older braf called zelboraf. All the meds have technically failed me. Some stuff keeps growing and sometimes new stuff shows up. Although finally keytruda did slow things down. So I'm still here and on the 21st of this month will be 2 years since diagnosis. Do I feel as good as I did 2 years ago? No. The disease and radiation and meds have all taken their toll. So in my opinion if you want to get away for awhile do so but include a visit to one of the big melanoma places like memorial Sloan Kettering in New York or md anderson in Houston. See the doc and take in the sites. That would be the getaway I recomend.

Artie

At stage 4 I'm suprised they aren't already talking more about the medicines. The newer fda approved meds are of two types. The gene targeted meds of tafinlar mekenist combo. But he has to be braf positive. The other type is immunotherapy like yervoy and if that doesn't work and he's braf negative or the braf failed there is the better immunotherapy of pd1. Either keytruda or opdivo.

There are also clinical trials.

ive been on all the meds I mentioned plus the older braf called zelboraf. All the meds have technically failed me. Some stuff keeps growing and sometimes new stuff shows up. Although finally keytruda did slow things down. So I'm still here and on the 21st of this month will be 2 years since diagnosis. Do I feel as good as I did 2 years ago? No. The disease and radiation and meds have all taken their toll. So in my opinion if you want to get away for awhile do so but include a visit to one of the big melanoma places like memorial Sloan Kettering in New York or md anderson in Houston. See the doc and take in the sites. That would be the getaway I recomend.

Artie