Stage IV diagnosis??!

If it hasn't spread to the lymphnodes or distant sites, it is not stage 4. Are you sure you aren't referencing the CLarks level? This is very different from the stage.

If it hasn't spread to the lymphnodes or distant sites, it is not stage 4. Are you sure you aren't referencing the CLarks level? This is very different from the stage.

If it hasn't spread to the lymphnodes or distant sites, it is not stage 4. Are you sure you aren't referencing the CLarks level? This is very different from the stage.

Since no one can say for sure, I think it's just odds and statistics. As many say here, no one is a statistic. In his specific situation, maybe his oncologist can say something. It can be put in remission for many years now with immunotherapies. They don't even know how many yet because some people comtinue to do well.

Since no one can say for sure, I think it's just odds and statistics. As many say here, no one is a statistic. In his specific situation, maybe his oncologist can say something. It can be put in remission for many years now with immunotherapies. They don't even know how many yet because some people comtinue to do well.

Since no one can say for sure, I think it's just odds and statistics. As many say here, no one is a statistic. In his specific situation, maybe his oncologist can say something. It can be put in remission for many years now with immunotherapies. They don't even know how many yet because some people comtinue to do well.

My husband is also stage IV, he had it in a lymph node and another internal tumor.  He had them completely removed by surgery and is now stage IV NED (no evidence of disease). Because there were two sites and because melanoma is what it is, he is on Opdivo to get any of the smaller mets that he might have had that the scans couldn't pick up. 

Here's what I know.  First if you go hunting on the internet for statistical prognosis data on Melanoma it is all old and therefore wrong.   The survival rates are going to go way up in the next five year.  There are immunotherapy drugs that got apporved in the past year that are going to dramatically change that prognosis data. 

Big THANK YOU to the ratties!!!!

Now those immunotherapy drugs, because they are new, are not approved for lower stages.  I have to agree I find it a bit odd that your husband is a stage IV with only one site.  But starting an immunotherapy drug like Opdivo or Keytruda might not be an option if he weren't a stage IV.  

There is something about the uptake/contrast piece that makes a brain MRI different.  Melanoma shows up because it has a high metabolic rate.  Trouble is so does your brain so to see a brain met on an MRI you need a different contrast or setting or something.

Good Luck,

Kathy

My husband is also stage IV, he had it in a lymph node and another internal tumor.  He had them completely removed by surgery and is now stage IV NED (no evidence of disease). Because there were two sites and because melanoma is what it is, he is on Opdivo to get any of the smaller mets that he might have had that the scans couldn't pick up. 

Here's what I know.  First if you go hunting on the internet for statistical prognosis data on Melanoma it is all old and therefore wrong.   The survival rates are going to go way up in the next five year.  There are immunotherapy drugs that got apporved in the past year that are going to dramatically change that prognosis data. 

Big THANK YOU to the ratties!!!!

Now those immunotherapy drugs, because they are new, are not approved for lower stages.  I have to agree I find it a bit odd that your husband is a stage IV with only one site.  But starting an immunotherapy drug like Opdivo or Keytruda might not be an option if he weren't a stage IV.  

There is something about the uptake/contrast piece that makes a brain MRI different.  Melanoma shows up because it has a high metabolic rate.  Trouble is so does your brain so to see a brain met on an MRI you need a different contrast or setting or something.

Good Luck,

Kathy

My husband is also stage IV, he had it in a lymph node and another internal tumor.  He had them completely removed by surgery and is now stage IV NED (no evidence of disease). Because there were two sites and because melanoma is what it is, he is on Opdivo to get any of the smaller mets that he might have had that the scans couldn't pick up. 

Here's what I know.  First if you go hunting on the internet for statistical prognosis data on Melanoma it is all old and therefore wrong.   The survival rates are going to go way up in the next five year.  There are immunotherapy drugs that got apporved in the past year that are going to dramatically change that prognosis data. 

Big THANK YOU to the ratties!!!!

Now those immunotherapy drugs, because they are new, are not approved for lower stages.  I have to agree I find it a bit odd that your husband is a stage IV with only one site.  But starting an immunotherapy drug like Opdivo or Keytruda might not be an option if he weren't a stage IV.  

There is something about the uptake/contrast piece that makes a brain MRI different.  Melanoma shows up because it has a high metabolic rate.  Trouble is so does your brain so to see a brain met on an MRI you need a different contrast or setting or something.

Good Luck,

Kathy

Hello,

It sounds similar to my husband's.  He is actually an unknown stage because they saw no skin component with his tumor (he had a 19 mm tumor removed) and the doctor put him at "Stage 4", but essentially he could be anywhere between stage 2 and 4.  This is what is considered a metastatic cutaneous melanoma of unknown primary.  They beleive it's a metastases because they saw no skin component to suggest it was the primary  but they can't confirm that it is through any type of pahtological testing.  His doctor at MD Anderson essentially was willing to stage him the highest in order to offer us the most treatment options.  His SLNB came back negative and his scans have been clear to date.  In the medical literature, no matter what this is called (Primary Dermal, Solitary Dermal, Cutaneous Metatstases, Melanoma of unknown primary), the rate of this type of occurene is what you are saying, somewhere between 3-5%.

Do you happen to know if the pathology report mentioned anything about an epidermal component?

The survival rates for this have been compared to those for comparative local and  regional spread.  BUT, again this is only due to retrospective analysis of patients they have identified as possibly being in this group through their medical records. There is no way to confirm clinically my husband's stage.

So, unfortunately, you may be in an unknown situation regardless of the stage.  That is where we are at and my husband has chosen a wait and watch approach (however, the oncologist was willing ot offer him immunotherapy).  Essentially, the protocol of scans and visits is the same whether we call this a Primary Dermal or not, still just waiting at this point.  The prognosis tend to be better for solitary dermal melanoma of unknow primary, but again no way to know.  A negative SLNB is always good though as well as clear scans. 

As people have cautioned already, the data they use to do these types of analysis is almost always behind current time, and therefore the prognosis data is from a time with different treatment options and there are great treatment options coming down the pipeline everyday. 

I have the same concerns you have in terms of recurrence or spread.  If you need, I can post links to the studies and their outcomes, but I hesitate to do that unless someone feels comfortable reading the medical jargon.  The statistics can look scary without a good understanding of these numbers and how they create these meta-analyses.

Best and good luck!

Jackie

Hello,

It sounds similar to my husband's.  He is actually an unknown stage because they saw no skin component with his tumor (he had a 19 mm tumor removed) and the doctor put him at "Stage 4", but essentially he could be anywhere between stage 2 and 4.  This is what is considered a metastatic cutaneous melanoma of unknown primary.  They beleive it's a metastases because they saw no skin component to suggest it was the primary  but they can't confirm that it is through any type of pahtological testing.  His doctor at MD Anderson essentially was willing to stage him the highest in order to offer us the most treatment options.  His SLNB came back negative and his scans have been clear to date.  In the medical literature, no matter what this is called (Primary Dermal, Solitary Dermal, Cutaneous Metatstases, Melanoma of unknown primary), the rate of this type of occurene is what you are saying, somewhere between 3-5%.

Do you happen to know if the pathology report mentioned anything about an epidermal component?

The survival rates for this have been compared to those for comparative local and  regional spread.  BUT, again this is only due to retrospective analysis of patients they have identified as possibly being in this group through their medical records. There is no way to confirm clinically my husband's stage.

So, unfortunately, you may be in an unknown situation regardless of the stage.  That is where we are at and my husband has chosen a wait and watch approach (however, the oncologist was willing ot offer him immunotherapy).  Essentially, the protocol of scans and visits is the same whether we call this a Primary Dermal or not, still just waiting at this point.  The prognosis tend to be better for solitary dermal melanoma of unknow primary, but again no way to know.  A negative SLNB is always good though as well as clear scans. 

As people have cautioned already, the data they use to do these types of analysis is almost always behind current time, and therefore the prognosis data is from a time with different treatment options and there are great treatment options coming down the pipeline everyday. 

I have the same concerns you have in terms of recurrence or spread.  If you need, I can post links to the studies and their outcomes, but I hesitate to do that unless someone feels comfortable reading the medical jargon.  The statistics can look scary without a good understanding of these numbers and how they create these meta-analyses.

Best and good luck!

Jackie

Hello,

It sounds similar to my husband's.  He is actually an unknown stage because they saw no skin component with his tumor (he had a 19 mm tumor removed) and the doctor put him at "Stage 4", but essentially he could be anywhere between stage 2 and 4.  This is what is considered a metastatic cutaneous melanoma of unknown primary.  They beleive it's a metastases because they saw no skin component to suggest it was the primary  but they can't confirm that it is through any type of pahtological testing.  His doctor at MD Anderson essentially was willing to stage him the highest in order to offer us the most treatment options.  His SLNB came back negative and his scans have been clear to date.  In the medical literature, no matter what this is called (Primary Dermal, Solitary Dermal, Cutaneous Metatstases, Melanoma of unknown primary), the rate of this type of occurene is what you are saying, somewhere between 3-5%.

Do you happen to know if the pathology report mentioned anything about an epidermal component?

The survival rates for this have been compared to those for comparative local and  regional spread.  BUT, again this is only due to retrospective analysis of patients they have identified as possibly being in this group through their medical records. There is no way to confirm clinically my husband's stage.

So, unfortunately, you may be in an unknown situation regardless of the stage.  That is where we are at and my husband has chosen a wait and watch approach (however, the oncologist was willing ot offer him immunotherapy).  Essentially, the protocol of scans and visits is the same whether we call this a Primary Dermal or not, still just waiting at this point.  The prognosis tend to be better for solitary dermal melanoma of unknow primary, but again no way to know.  A negative SLNB is always good though as well as clear scans. 

As people have cautioned already, the data they use to do these types of analysis is almost always behind current time, and therefore the prognosis data is from a time with different treatment options and there are great treatment options coming down the pipeline everyday. 

I have the same concerns you have in terms of recurrence or spread.  If you need, I can post links to the studies and their outcomes, but I hesitate to do that unless someone feels comfortable reading the medical jargon.  The statistics can look scary without a good understanding of these numbers and how they create these meta-analyses.

Best and good luck!

Jackie