Stage 3B and waiting-help!!

I have been NED for almost 6 years after being diagnosed Stage IIIB. All I chose was surgery and have been thankful my bet has worked so far! However, there are better options now and this board can help guide you with experience. Personally, I did not choose interferon because the risks and side effects for me outweighed the small percentage that it would help. Others have made that choice and have been glad they did.  You will hear this over and over and it is true – FIND a melanoma specialist!  It may take extra effort to get to one but you will be glad you did. Weigh all your options and make the decisions with all the education you can taking into account your personal life and what you feel is best.

Good luck – this board can be a great support.

I have been NED for almost 6 years after being diagnosed Stage IIIB. All I chose was surgery and have been thankful my bet has worked so far! However, there are better options now and this board can help guide you with experience. Personally, I did not choose interferon because the risks and side effects for me outweighed the small percentage that it would help. Others have made that choice and have been glad they did.  You will hear this over and over and it is true – FIND a melanoma specialist!  It may take extra effort to get to one but you will be glad you did. Weigh all your options and make the decisions with all the education you can taking into account your personal life and what you feel is best.

Good luck – this board can be a great support.

I have been NED for almost 6 years after being diagnosed Stage IIIB. All I chose was surgery and have been thankful my bet has worked so far! However, there are better options now and this board can help guide you with experience. Personally, I did not choose interferon because the risks and side effects for me outweighed the small percentage that it would help. Others have made that choice and have been glad they did.  You will hear this over and over and it is true – FIND a melanoma specialist!  It may take extra effort to get to one but you will be glad you did. Weigh all your options and make the decisions with all the education you can taking into account your personal life and what you feel is best.

Good luck – this board can be a great support.

My husband had a 19 mm (that's correct) tumor (the entire dimension were 22 X 20 mm) which was removed this February from his upper left back.  He told me he had a cyst removed and that he had melanoma on a Saturday night while watching a movie!  I was floored.  He is 48 and we have a 6 year old daughter.  We are lucky, we live in Houston so we are right by MD Anderson.  However, I've done tons of research based on hispathology and factors.  I know that they do have BRAF inhibitors that are targeted specifically for that type of mutation that causes the tumor to grow, if that is the type of mutation your husband has.  They have Zelboraf for that type and they also have Yervoy (ipi) for that. Yervoy can also be used in Immunotherapy which is tough but a game changer in the melanoma world.  It's essentially boosting your immune system (hence the side effects) instead of the traditional approach of trying to kill all the cancer cells.  It inhibits the tumor growth by inhibiting the pathway essentially.  My husband happens to have the NRAS mutation which they haven't developed anything really for it yet, even though it's on the same pathway as BRAF.

My husband had the WLE and then SLNB which came back negative and the scans came back negative.  They couldn't stage him because there was no overlying epidermal component to suggest it was a primary (hence it was either Stage 4 or Stage 2, BIG DIFFERENCE).  We are waiting and seeing and they can't tell if he has primary dermal melanoma due to the lack of skin involvement (it could have regressed since he had a weird mole there for years), but it does help my state of mind that we are right near melanoma specialists.  So maybe if you got melanoma specialist that would help with the anxiety.   Our clinical oncologist didn't think Interferon was worth it based on the research that shows it doesn't necessarily extend life, but it does extend the time until recurrence if that happens. We will do a vaccine trial if one opens up since there is very little risk at this point.

If you need any other research, feel free to say.  I'm actually a medical librarian but afraid to data dump as it can be pretty overwhelming.

Here at MD Anderson they have Immunotherapy which has shown really good results:

http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-topics/cancer-treatment/chemotherapy/immunotherapy/index.html

I hope any of this helps but more importantly I know how hard the not knowing is.  It's hard to make these huge decisions without really knowing, many hugs.

My husband had a 19 mm (that's correct) tumor (the entire dimension were 22 X 20 mm) which was removed this February from his upper left back.  He told me he had a cyst removed and that he had melanoma on a Saturday night while watching a movie!  I was floored.  He is 48 and we have a 6 year old daughter.  We are lucky, we live in Houston so we are right by MD Anderson.  However, I've done tons of research based on hispathology and factors.  I know that they do have BRAF inhibitors that are targeted specifically for that type of mutation that causes the tumor to grow, if that is the type of mutation your husband has.  They have Zelboraf for that type and they also have Yervoy (ipi) for that. Yervoy can also be used in Immunotherapy which is tough but a game changer in the melanoma world.  It's essentially boosting your immune system (hence the side effects) instead of the traditional approach of trying to kill all the cancer cells.  It inhibits the tumor growth by inhibiting the pathway essentially.  My husband happens to have the NRAS mutation which they haven't developed anything really for it yet, even though it's on the same pathway as BRAF.

My husband had the WLE and then SLNB which came back negative and the scans came back negative.  They couldn't stage him because there was no overlying epidermal component to suggest it was a primary (hence it was either Stage 4 or Stage 2, BIG DIFFERENCE).  We are waiting and seeing and they can't tell if he has primary dermal melanoma due to the lack of skin involvement (it could have regressed since he had a weird mole there for years), but it does help my state of mind that we are right near melanoma specialists.  So maybe if you got melanoma specialist that would help with the anxiety.   Our clinical oncologist didn't think Interferon was worth it based on the research that shows it doesn't necessarily extend life, but it does extend the time until recurrence if that happens. We will do a vaccine trial if one opens up since there is very little risk at this point.

If you need any other research, feel free to say.  I'm actually a medical librarian but afraid to data dump as it can be pretty overwhelming.

Here at MD Anderson they have Immunotherapy which has shown really good results:

http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-topics/cancer-treatment/chemotherapy/immunotherapy/index.html

I hope any of this helps but more importantly I know how hard the not knowing is.  It's hard to make these huge decisions without really knowing, many hugs.

My husband had a 19 mm (that's correct) tumor (the entire dimension were 22 X 20 mm) which was removed this February from his upper left back.  He told me he had a cyst removed and that he had melanoma on a Saturday night while watching a movie!  I was floored.  He is 48 and we have a 6 year old daughter.  We are lucky, we live in Houston so we are right by MD Anderson.  However, I've done tons of research based on hispathology and factors.  I know that they do have BRAF inhibitors that are targeted specifically for that type of mutation that causes the tumor to grow, if that is the type of mutation your husband has.  They have Zelboraf for that type and they also have Yervoy (ipi) for that. Yervoy can also be used in Immunotherapy which is tough but a game changer in the melanoma world.  It's essentially boosting your immune system (hence the side effects) instead of the traditional approach of trying to kill all the cancer cells.  It inhibits the tumor growth by inhibiting the pathway essentially.  My husband happens to have the NRAS mutation which they haven't developed anything really for it yet, even though it's on the same pathway as BRAF.

My husband had the WLE and then SLNB which came back negative and the scans came back negative.  They couldn't stage him because there was no overlying epidermal component to suggest it was a primary (hence it was either Stage 4 or Stage 2, BIG DIFFERENCE).  We are waiting and seeing and they can't tell if he has primary dermal melanoma due to the lack of skin involvement (it could have regressed since he had a weird mole there for years), but it does help my state of mind that we are right near melanoma specialists.  So maybe if you got melanoma specialist that would help with the anxiety.   Our clinical oncologist didn't think Interferon was worth it based on the research that shows it doesn't necessarily extend life, but it does extend the time until recurrence if that happens. We will do a vaccine trial if one opens up since there is very little risk at this point.

If you need any other research, feel free to say.  I'm actually a medical librarian but afraid to data dump as it can be pretty overwhelming.

Here at MD Anderson they have Immunotherapy which has shown really good results:

http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-topics/cancer-treatment/chemotherapy/immunotherapy/index.html

I hope any of this helps but more importantly I know how hard the not knowing is.  It's hard to make these huge decisions without really knowing, many hugs.

Hi – sorry to welcome you here, but you have come to a good place for information and support.

There are many similarities between your husband's case and my husband's – including a 9 mm melanoma that didn't show up on the skin. We consulted with Dr. Scharfman at Johns Hopkins, who specializes in melanoma of unknown primary. He helped us deal with the uncertainties of diagnosing and deciding on a course of treatment for these kinds of cases.

You don't say where you are located or whether you are able to travel, but I suggest you find a melanoma specialist with experience and knowledge of melanoma of unknown primary. Find someone you are comfortable with to help you navigate the next few months.

Wishing you well.

Hazel

Hi – sorry to welcome you here, but you have come to a good place for information and support.

There are many similarities between your husband's case and my husband's – including a 9 mm melanoma that didn't show up on the skin. We consulted with Dr. Scharfman at Johns Hopkins, who specializes in melanoma of unknown primary. He helped us deal with the uncertainties of diagnosing and deciding on a course of treatment for these kinds of cases.

You don't say where you are located or whether you are able to travel, but I suggest you find a melanoma specialist with experience and knowledge of melanoma of unknown primary. Find someone you are comfortable with to help you navigate the next few months.

Wishing you well.

Hazel

Hi – sorry to welcome you here, but you have come to a good place for information and support.

There are many similarities between your husband's case and my husband's – including a 9 mm melanoma that didn't show up on the skin. We consulted with Dr. Scharfman at Johns Hopkins, who specializes in melanoma of unknown primary. He helped us deal with the uncertainties of diagnosing and deciding on a course of treatment for these kinds of cases.

You don't say where you are located or whether you are able to travel, but I suggest you find a melanoma specialist with experience and knowledge of melanoma of unknown primary. Find someone you are comfortable with to help you navigate the next few months.

Wishing you well.

Hazel