Brain mets but unknown original source?

Cases with an unknown primary tumour are fairly rare. I remember a friend's husband
having this many years ago. Here is some info about melanoma with an unknown primary:
http://www.asco.org/ascov2/Meetings/Abstracts?vmview=abst_detail_view&abstractID=31120&confID=55

CT/PET scans are normally done according to the schedule that the oncologist feels is
appropriate.

If there is no evidence of disease (also known as NED), many oncologists will suggest
monitoring the situation with regular scans without any specific systemic treatments.

However, it is always wise to have a plan in place if the melanoma returns. These are
some treatments that show promise and are worth looking at, depending on
eligibility criteria and availability: GM-CSF (Leukine) and surgery when needed, Yervoy,
BRAF and similar inhibitors, IL-2, and anti PD-1 (MDX-1106). I feel that TIL
treatment (adoptive cell therapy) is the option that may give suitable patients the best
chance of achieving a durable remission.

Sometimes the concept of "stage" is not really helpful, and I can see why oncologists
don't say alot about this. I think that once melanoma cells are present in the
bloodstream, then it is more helpful to view melanoma as a chronic systemic disease.

Hope this helps.

Frank from Australia

Cases with an unknown primary tumour are fairly rare. I remember a friend's husband
having this many years ago. Here is some info about melanoma with an unknown primary:
http://www.asco.org/ascov2/Meetings/Abstracts?vmview=abst_detail_view&abstractID=31120&confID=55

CT/PET scans are normally done according to the schedule that the oncologist feels is
appropriate.

If there is no evidence of disease (also known as NED), many oncologists will suggest
monitoring the situation with regular scans without any specific systemic treatments.

However, it is always wise to have a plan in place if the melanoma returns. These are
some treatments that show promise and are worth looking at, depending on
eligibility criteria and availability: GM-CSF (Leukine) and surgery when needed, Yervoy,
BRAF and similar inhibitors, IL-2, and anti PD-1 (MDX-1106). I feel that TIL
treatment (adoptive cell therapy) is the option that may give suitable patients the best
chance of achieving a durable remission.

Sometimes the concept of "stage" is not really helpful, and I can see why oncologists
don't say alot about this. I think that once melanoma cells are present in the
bloodstream, then it is more helpful to view melanoma as a chronic systemic disease.

Hope this helps.

Frank from Australia

Cases with an unknown primary tumour are fairly rare. I remember a friend's husband
having this many years ago. Here is some info about melanoma with an unknown primary:
http://www.asco.org/ascov2/Meetings/Abstracts?vmview=abst_detail_view&abstractID=31120&confID=55

CT/PET scans are normally done according to the schedule that the oncologist feels is
appropriate.

If there is no evidence of disease (also known as NED), many oncologists will suggest
monitoring the situation with regular scans without any specific systemic treatments.

However, it is always wise to have a plan in place if the melanoma returns. These are
some treatments that show promise and are worth looking at, depending on
eligibility criteria and availability: GM-CSF (Leukine) and surgery when needed, Yervoy,
BRAF and similar inhibitors, IL-2, and anti PD-1 (MDX-1106). I feel that TIL
treatment (adoptive cell therapy) is the option that may give suitable patients the best
chance of achieving a durable remission.

Sometimes the concept of "stage" is not really helpful, and I can see why oncologists
don't say alot about this. I think that once melanoma cells are present in the
bloodstream, then it is more helpful to view melanoma as a chronic systemic disease.

Hope this helps.

Frank from Australia

At this point the original primary doesn't matter, it just needs to be dealt with now.   We have several on the board that also have unknown primaries.  

Right now I have the fairly large brain tumor but my other PET showed all is clear.  As of this last discussion I am dealing right now just with the brain, nothing systemic.   Now, if the brain doesn't get cleared from either the SRS or a crainectomy (decision being made in 3 weeks) then systemic would be discussed.

Their are different thoughts with different Drs but many will not treat without a tumor (stage IV) watch to see if there is a response.  If you read through trials almost all want at least a tumor of 1cm size.  There are a few trials out there like an antipd1 trial in Moffitt, but the person also has to have an hla0201 positve for the vaccine that goes along.   I would have to think that the brain has to have been clear for a certain amount of time.

I don't know how often your dad will be given an mri but am assuming his PET scans are every 3 months.  I'm surprised they haven't discussed your stage.  Even though the mel is in only one organ – the brain – I have to imagine he is stage IV. 

Right now there happens to be many of us with recent brain tumors.   Scary……   I had been stage IV for 5 years and  was NED (no evidence of the disease) at the time.   

Linda

At this point the original primary doesn't matter, it just needs to be dealt with now.   We have several on the board that also have unknown primaries.  

Right now I have the fairly large brain tumor but my other PET showed all is clear.  As of this last discussion I am dealing right now just with the brain, nothing systemic.   Now, if the brain doesn't get cleared from either the SRS or a crainectomy (decision being made in 3 weeks) then systemic would be discussed.

Their are different thoughts with different Drs but many will not treat without a tumor (stage IV) watch to see if there is a response.  If you read through trials almost all want at least a tumor of 1cm size.  There are a few trials out there like an antipd1 trial in Moffitt, but the person also has to have an hla0201 positve for the vaccine that goes along.   I would have to think that the brain has to have been clear for a certain amount of time.

I don't know how often your dad will be given an mri but am assuming his PET scans are every 3 months.  I'm surprised they haven't discussed your stage.  Even though the mel is in only one organ – the brain – I have to imagine he is stage IV. 

Right now there happens to be many of us with recent brain tumors.   Scary……   I had been stage IV for 5 years and  was NED (no evidence of the disease) at the time.   

Linda

At this point the original primary doesn't matter, it just needs to be dealt with now.   We have several on the board that also have unknown primaries.  

Right now I have the fairly large brain tumor but my other PET showed all is clear.  As of this last discussion I am dealing right now just with the brain, nothing systemic.   Now, if the brain doesn't get cleared from either the SRS or a crainectomy (decision being made in 3 weeks) then systemic would be discussed.

Their are different thoughts with different Drs but many will not treat without a tumor (stage IV) watch to see if there is a response.  If you read through trials almost all want at least a tumor of 1cm size.  There are a few trials out there like an antipd1 trial in Moffitt, but the person also has to have an hla0201 positve for the vaccine that goes along.   I would have to think that the brain has to have been clear for a certain amount of time.

I don't know how often your dad will be given an mri but am assuming his PET scans are every 3 months.  I'm surprised they haven't discussed your stage.  Even though the mel is in only one organ – the brain – I have to imagine he is stage IV. 

Right now there happens to be many of us with recent brain tumors.   Scary……   I had been stage IV for 5 years and  was NED (no evidence of the disease) at the time.   

Linda