Newly diagnosed- long post

Sorry to hear about the news – I do not think there is a good way to get the news so don't feel too bad about getting it over the phone.

Step 1 here is to skip Google… this is a case where it is not your friend. The majority of information you will come across is old and the statistics are outdated given the vast improvement in treatments over just the past few years. If those statistics were right, many of us would not still be here.

Step 2 is find a melanoma specialist. Treatment has changed so much… new treatments have been approved this year and they continue to improve. Only a melanoma speicliast will be able to stay current on this. 

Step 3 is likely surgery to remove the cancerous nodes in your neck and to find out about the spot in the lung if possible.

Best thing you can do is try to stay positive. I was diagnosed to stage 4 over a year ago and I know it seems like the sky is falling (I have 3 young kids myself). They went in to remove a foot of my small intestine. I have been NED (no evidence of disease) ever since and I am not going through treatment. I feel great and hit the gym three times a week.

Kevin

Sorry to hear about the news – I do not think there is a good way to get the news so don't feel too bad about getting it over the phone.

Step 1 here is to skip Google… this is a case where it is not your friend. The majority of information you will come across is old and the statistics are outdated given the vast improvement in treatments over just the past few years. If those statistics were right, many of us would not still be here.

Step 2 is find a melanoma specialist. Treatment has changed so much… new treatments have been approved this year and they continue to improve. Only a melanoma speicliast will be able to stay current on this. 

Step 3 is likely surgery to remove the cancerous nodes in your neck and to find out about the spot in the lung if possible.

Best thing you can do is try to stay positive. I was diagnosed to stage 4 over a year ago and I know it seems like the sky is falling (I have 3 young kids myself). They went in to remove a foot of my small intestine. I have been NED (no evidence of disease) ever since and I am not going through treatment. I feel great and hit the gym three times a week.

Kevin

Sorry to hear about the news – I do not think there is a good way to get the news so don't feel too bad about getting it over the phone.

Step 1 here is to skip Google… this is a case where it is not your friend. The majority of information you will come across is old and the statistics are outdated given the vast improvement in treatments over just the past few years. If those statistics were right, many of us would not still be here.

Step 2 is find a melanoma specialist. Treatment has changed so much… new treatments have been approved this year and they continue to improve. Only a melanoma speicliast will be able to stay current on this. 

Step 3 is likely surgery to remove the cancerous nodes in your neck and to find out about the spot in the lung if possible.

Best thing you can do is try to stay positive. I was diagnosed to stage 4 over a year ago and I know it seems like the sky is falling (I have 3 young kids myself). They went in to remove a foot of my small intestine. I have been NED (no evidence of disease) ever since and I am not going through treatment. I feel great and hit the gym three times a week.

Kevin

Thomas,

Sorry to hear about your recent diagnosis.  You are at the point right now where this is all very overwhelming but hang in there, it will slowly start to make sense and the course of action will begin to show itself.  I'll just touch on a few things now and I'm sure others will chime in shortly.  First don't get to wrapped up in the survival statistics you read on the internet.  All the statistics are based on the past and in the past there wasn't a whole lot of effective options for stage III and stage IV melanoma.  Just in the last couple years there have been tremendous advancements.  I don't want to imply that melanoma now isn't a very serious and grave disease but I just want you to know there is hope. 

The first advice almost everyone on here universally agrees with is you need to get to a melanoma specialist.  If you provide your location I'm sure there will be others that can provide recommendations.  Even if you have to travel a few hours to get to a specialist it is well worth it.  The advances in the field of melanoma are simply to dynamic for your general oncologist to keep up with.  Don't be bashful about getting 2nd or 3rd opinions if needed. 

I wanted to suggest to you not to jump too far ahead and assume you are stage IV.  Let's hope the lung spot turns out to be nothing.  That would put you at stage III.  As your doctor stated the first step is the neck surgery and then evaluate the options.  A big factor in your options will be if after the surgery whether or not you are NED (No Evidence of Disease).  If the lung nodule is too small to biopsy they may take the watch and wait for a month or two and then rescan. 

Hang in there Thomas.  When I was diagnosed as stage III in 2011 I had a 1 and 3 year old.  They are now 4 and 6 and I treasure everyday with them.  I know it's a scary time for you right now.  Stay engaged with this board and I think you will find it a huge support for you in this difficult time.

Brian

Thomas,

Sorry to hear about your recent diagnosis.  You are at the point right now where this is all very overwhelming but hang in there, it will slowly start to make sense and the course of action will begin to show itself.  I'll just touch on a few things now and I'm sure others will chime in shortly.  First don't get to wrapped up in the survival statistics you read on the internet.  All the statistics are based on the past and in the past there wasn't a whole lot of effective options for stage III and stage IV melanoma.  Just in the last couple years there have been tremendous advancements.  I don't want to imply that melanoma now isn't a very serious and grave disease but I just want you to know there is hope. 

The first advice almost everyone on here universally agrees with is you need to get to a melanoma specialist.  If you provide your location I'm sure there will be others that can provide recommendations.  Even if you have to travel a few hours to get to a specialist it is well worth it.  The advances in the field of melanoma are simply to dynamic for your general oncologist to keep up with.  Don't be bashful about getting 2nd or 3rd opinions if needed. 

I wanted to suggest to you not to jump too far ahead and assume you are stage IV.  Let's hope the lung spot turns out to be nothing.  That would put you at stage III.  As your doctor stated the first step is the neck surgery and then evaluate the options.  A big factor in your options will be if after the surgery whether or not you are NED (No Evidence of Disease).  If the lung nodule is too small to biopsy they may take the watch and wait for a month or two and then rescan. 

Hang in there Thomas.  When I was diagnosed as stage III in 2011 I had a 1 and 3 year old.  They are now 4 and 6 and I treasure everyday with them.  I know it's a scary time for you right now.  Stay engaged with this board and I think you will find it a huge support for you in this difficult time.

Brian

Thomas,

Sorry to hear about your recent diagnosis.  You are at the point right now where this is all very overwhelming but hang in there, it will slowly start to make sense and the course of action will begin to show itself.  I'll just touch on a few things now and I'm sure others will chime in shortly.  First don't get to wrapped up in the survival statistics you read on the internet.  All the statistics are based on the past and in the past there wasn't a whole lot of effective options for stage III and stage IV melanoma.  Just in the last couple years there have been tremendous advancements.  I don't want to imply that melanoma now isn't a very serious and grave disease but I just want you to know there is hope. 

The first advice almost everyone on here universally agrees with is you need to get to a melanoma specialist.  If you provide your location I'm sure there will be others that can provide recommendations.  Even if you have to travel a few hours to get to a specialist it is well worth it.  The advances in the field of melanoma are simply to dynamic for your general oncologist to keep up with.  Don't be bashful about getting 2nd or 3rd opinions if needed. 

I wanted to suggest to you not to jump too far ahead and assume you are stage IV.  Let's hope the lung spot turns out to be nothing.  That would put you at stage III.  As your doctor stated the first step is the neck surgery and then evaluate the options.  A big factor in your options will be if after the surgery whether or not you are NED (No Evidence of Disease).  If the lung nodule is too small to biopsy they may take the watch and wait for a month or two and then rescan. 

Hang in there Thomas.  When I was diagnosed as stage III in 2011 I had a 1 and 3 year old.  They are now 4 and 6 and I treasure everyday with them.  I know it's a scary time for you right now.  Stay engaged with this board and I think you will find it a huge support for you in this difficult time.

Brian

I am so sorry you have to go through all of this. I was also diagnosed right around the same time as you, also metastatic melanoma. I am not as knowledgeable as others who post to this board, but I do believe you will find some very helpful, friendly folks here, just as I have. My best advice to you is to make sure you find someone who specializes in melanoma. The oncologist I was seeing here basically told me that I would be in better hands with a melanoma specialist, so she recommended John's Hopkins in Baltimore. The next bit of advice is one I have trouble following myself… Understand that there have been so many advancements in how metastatic melanoma is treated, even in just the last few years. There are new treatments and new trials available that are showing some promising results. I will soon be starting a trial administering Yervoy and Nivolumab at the same time, and I am so hopeful! I am still learning, but I hope this helps a bit!

Eileen

I am so sorry you have to go through all of this. I was also diagnosed right around the same time as you, also metastatic melanoma. I am not as knowledgeable as others who post to this board, but I do believe you will find some very helpful, friendly folks here, just as I have. My best advice to you is to make sure you find someone who specializes in melanoma. The oncologist I was seeing here basically told me that I would be in better hands with a melanoma specialist, so she recommended John's Hopkins in Baltimore. The next bit of advice is one I have trouble following myself… Understand that there have been so many advancements in how metastatic melanoma is treated, even in just the last few years. There are new treatments and new trials available that are showing some promising results. I will soon be starting a trial administering Yervoy and Nivolumab at the same time, and I am so hopeful! I am still learning, but I hope this helps a bit!

Eileen

I am so sorry you have to go through all of this. I was also diagnosed right around the same time as you, also metastatic melanoma. I am not as knowledgeable as others who post to this board, but I do believe you will find some very helpful, friendly folks here, just as I have. My best advice to you is to make sure you find someone who specializes in melanoma. The oncologist I was seeing here basically told me that I would be in better hands with a melanoma specialist, so she recommended John's Hopkins in Baltimore. The next bit of advice is one I have trouble following myself… Understand that there have been so many advancements in how metastatic melanoma is treated, even in just the last few years. There are new treatments and new trials available that are showing some promising results. I will soon be starting a trial administering Yervoy and Nivolumab at the same time, and I am so hopeful! I am still learning, but I hope this helps a bit!

Eileen

I am not too good with the stages but I would be surprised nodes in the neck and maybe one small spot in lung makes you stage 4. Breslow 4 probably but I would be surprised stage 4. Janner is way better at explaining that stuff than I am.

As far as the cancer clinic hopefully it is with a melanoma specialist.

I know this stuff can be scary because I've been there and still am stage 4 since June of 2013. One good thing you got going for you is your tumor burden is extremely low. Surgery on your neck probably stands a good chance of getting you NED (no evidence of disease). You might want to ask your surgeon he is confident of that. Your other option is radiation which you might want to do after surgery to that area just to be on the safer side. My doc says surgery can get up to 99% of the cells so the radiation would be for the small amount it doesn't get.

After that I would expect regular 6 month pet scans to make sure if you get a recurrence that it gets found quick. 

So yeah I see a very good prognosis for you and you will be fine. I'm not just saying that to be encouraging but from all I've read and heard about. One of my friends also had a similar experience and did the surgery and radiation and is now NED. He also takes some pill to hopefully not have a recurrence and is at the beginning of his regular scans. You might want to ask after surgery what you can take to stay NED.

Also you might want to change your diet some and get some more exercise. Eating as close to natural as you can with lots of fresh stuff seems like a pretty good way to go. It gives our bodies what it needs without all these preservatives that our bodies have a hard time with.

Now if surgery can't get you NED then you are looking at the medicines. Since you said stage 4 I'll go with those and they are all I know anyway. There are two fda approved types. The braf target that specific gene mutation. In my opinion they should only be used when a person needs a quick response. So not you in my opinion. These are the tafinlar and mekinist combo and the older zelboraf. Although technically mekinist doesn't target braf it targets mek. Anyway the second group are the immunotherapies that take longer to work but tend to have longer lasting effect. Currently via the fda you have to start with yervoy then if needed continue with one of the pd1s. Either keytruda like I'm on or opdivo. There are also some other older medicines like il2 and things that aren't much talked about anymore. Other than that there are many clinical trials going on all recorded at clinicaltrials.gov.

Artie

I am not too good with the stages but I would be surprised nodes in the neck and maybe one small spot in lung makes you stage 4. Breslow 4 probably but I would be surprised stage 4. Janner is way better at explaining that stuff than I am.

As far as the cancer clinic hopefully it is with a melanoma specialist.

I know this stuff can be scary because I've been there and still am stage 4 since June of 2013. One good thing you got going for you is your tumor burden is extremely low. Surgery on your neck probably stands a good chance of getting you NED (no evidence of disease). You might want to ask your surgeon he is confident of that. Your other option is radiation which you might want to do after surgery to that area just to be on the safer side. My doc says surgery can get up to 99% of the cells so the radiation would be for the small amount it doesn't get.

After that I would expect regular 6 month pet scans to make sure if you get a recurrence that it gets found quick. 

So yeah I see a very good prognosis for you and you will be fine. I'm not just saying that to be encouraging but from all I've read and heard about. One of my friends also had a similar experience and did the surgery and radiation and is now NED. He also takes some pill to hopefully not have a recurrence and is at the beginning of his regular scans. You might want to ask after surgery what you can take to stay NED.

Also you might want to change your diet some and get some more exercise. Eating as close to natural as you can with lots of fresh stuff seems like a pretty good way to go. It gives our bodies what it needs without all these preservatives that our bodies have a hard time with.

Now if surgery can't get you NED then you are looking at the medicines. Since you said stage 4 I'll go with those and they are all I know anyway. There are two fda approved types. The braf target that specific gene mutation. In my opinion they should only be used when a person needs a quick response. So not you in my opinion. These are the tafinlar and mekinist combo and the older zelboraf. Although technically mekinist doesn't target braf it targets mek. Anyway the second group are the immunotherapies that take longer to work but tend to have longer lasting effect. Currently via the fda you have to start with yervoy then if needed continue with one of the pd1s. Either keytruda like I'm on or opdivo. There are also some other older medicines like il2 and things that aren't much talked about anymore. Other than that there are many clinical trials going on all recorded at clinicaltrials.gov.

Artie

I am not too good with the stages but I would be surprised nodes in the neck and maybe one small spot in lung makes you stage 4. Breslow 4 probably but I would be surprised stage 4. Janner is way better at explaining that stuff than I am.

As far as the cancer clinic hopefully it is with a melanoma specialist.

I know this stuff can be scary because I've been there and still am stage 4 since June of 2013. One good thing you got going for you is your tumor burden is extremely low. Surgery on your neck probably stands a good chance of getting you NED (no evidence of disease). You might want to ask your surgeon he is confident of that. Your other option is radiation which you might want to do after surgery to that area just to be on the safer side. My doc says surgery can get up to 99% of the cells so the radiation would be for the small amount it doesn't get.

After that I would expect regular 6 month pet scans to make sure if you get a recurrence that it gets found quick. 

So yeah I see a very good prognosis for you and you will be fine. I'm not just saying that to be encouraging but from all I've read and heard about. One of my friends also had a similar experience and did the surgery and radiation and is now NED. He also takes some pill to hopefully not have a recurrence and is at the beginning of his regular scans. You might want to ask after surgery what you can take to stay NED.

Also you might want to change your diet some and get some more exercise. Eating as close to natural as you can with lots of fresh stuff seems like a pretty good way to go. It gives our bodies what it needs without all these preservatives that our bodies have a hard time with.

Now if surgery can't get you NED then you are looking at the medicines. Since you said stage 4 I'll go with those and they are all I know anyway. There are two fda approved types. The braf target that specific gene mutation. In my opinion they should only be used when a person needs a quick response. So not you in my opinion. These are the tafinlar and mekinist combo and the older zelboraf. Although technically mekinist doesn't target braf it targets mek. Anyway the second group are the immunotherapies that take longer to work but tend to have longer lasting effect. Currently via the fda you have to start with yervoy then if needed continue with one of the pd1s. Either keytruda like I'm on or opdivo. There are also some other older medicines like il2 and things that aren't much talked about anymore. Other than that there are many clinical trials going on all recorded at clinicaltrials.gov.

Artie

I agree with the Googling thing as Kevin suggested above. When I first learned about melanoma, it was extremely frustrating reading all the negative search results. However, treatments have been improved greatly these years. If you want to learn more, I suggest you limit the search time frame within the recent 2 years. Likely you'll get updated information.

I agree with the Googling thing as Kevin suggested above. When I first learned about melanoma, it was extremely frustrating reading all the negative search results. However, treatments have been improved greatly these years. If you want to learn more, I suggest you limit the search time frame within the recent 2 years. Likely you'll get updated information.

I agree with the Googling thing as Kevin suggested above. When I first learned about melanoma, it was extremely frustrating reading all the negative search results. However, treatments have been improved greatly these years. If you want to learn more, I suggest you limit the search time frame within the recent 2 years. Likely you'll get updated information.