Excellent Melanoma Presentation

I saw this on your blog…lot of good info…where's the the interpretation?

Curious on the PD-L1…is that something tumor should be tested for? I guess what I'm coming to wonder is what testing should be done on tumor as it relates to treatments tha will work.

My example: at Loyola for the TCR trial they look for HLA-A2 expression in blood and tumor as well as tyrosinaise. I'm good there and qualify but brain mri can exclude if mets show up…think I would need them treated first.

At MD, they're looking for a higher resolution blood test on HLA….HLA-A201. Waiting for results. For the tumor they're looking for Mart-1 expression which I had. I also think here that you can have a few brain mets and qualify.

So should I be looking or requesting further testing? All this waiting makes me feel like this shit will kill me before I even get treated. What a shit show!!!

Also not sure if mentioned that now I'm getting what appears to be vitiligo on my face. My wife said to me other day…what's going on there? Really?? I heard in past that it's good indication of immune response to treatment…so ironic.

Anyway, appreciate the info as usual Bubbles!!!

Love,

Joshie

I saw this on your blog…lot of good info…where's the the interpretation?

Curious on the PD-L1…is that something tumor should be tested for? I guess what I'm coming to wonder is what testing should be done on tumor as it relates to treatments tha will work.

My example: at Loyola for the TCR trial they look for HLA-A2 expression in blood and tumor as well as tyrosinaise. I'm good there and qualify but brain mri can exclude if mets show up…think I would need them treated first.

At MD, they're looking for a higher resolution blood test on HLA….HLA-A201. Waiting for results. For the tumor they're looking for Mart-1 expression which I had. I also think here that you can have a few brain mets and qualify.

So should I be looking or requesting further testing? All this waiting makes me feel like this shit will kill me before I even get treated. What a shit show!!!

Also not sure if mentioned that now I'm getting what appears to be vitiligo on my face. My wife said to me other day…what's going on there? Really?? I heard in past that it's good indication of immune response to treatment…so ironic.

Anyway, appreciate the info as usual Bubbles!!!

Love,

Joshie

I saw this on your blog…lot of good info…where's the the interpretation?

Curious on the PD-L1…is that something tumor should be tested for? I guess what I'm coming to wonder is what testing should be done on tumor as it relates to treatments tha will work.

My example: at Loyola for the TCR trial they look for HLA-A2 expression in blood and tumor as well as tyrosinaise. I'm good there and qualify but brain mri can exclude if mets show up…think I would need them treated first.

At MD, they're looking for a higher resolution blood test on HLA….HLA-A201. Waiting for results. For the tumor they're looking for Mart-1 expression which I had. I also think here that you can have a few brain mets and qualify.

So should I be looking or requesting further testing? All this waiting makes me feel like this shit will kill me before I even get treated. What a shit show!!!

Also not sure if mentioned that now I'm getting what appears to be vitiligo on my face. My wife said to me other day…what's going on there? Really?? I heard in past that it's good indication of immune response to treatment…so ironic.

Anyway, appreciate the info as usual Bubbles!!!

Love,

Joshie

Thanks Celeste for posting this graphic presentation.  It is really difficult for me, a "lay person" to understand so much of the jargon, medical terminology, and chemical interactions inherent in doing melanoma research.  The pictures do help explain the data which could be valuable to many.  But I don't cut my own hair, nor would I try and represent myself in court on a serious legal matter.  There are things better left to experts, and it's why I've relied on my doctor to help guide me through the process, make suggestions on treatments.  It would seem he always has another tool in the toolbox should the current treatment fail.  While it's common to preach here, about making one's own choices in treatment, if you don't really understand it and it would take more than a medical degree to do so, then perhaps its time to defer to others. (Charlie's points about incompetent doctors duly noted) Thinking about Josh stressing over the next choice in treatment, trying to understand it all.  It really is all too much.  They say the simplest answer is usually the correct one.  The next "logical" treatment, whenever possible, should be something fresh, but has proven results.  Unless my doctor told me otherwise, I would choose that over any trial with no substantial data to prove it would be the better choice. The idea is to just delay, delay, delay, until hopefully the silver bullet is discovered, before reaching the pearly gates.  

Gary

Thanks Celeste for posting this graphic presentation.  It is really difficult for me, a "lay person" to understand so much of the jargon, medical terminology, and chemical interactions inherent in doing melanoma research.  The pictures do help explain the data which could be valuable to many.  But I don't cut my own hair, nor would I try and represent myself in court on a serious legal matter.  There are things better left to experts, and it's why I've relied on my doctor to help guide me through the process, make suggestions on treatments.  It would seem he always has another tool in the toolbox should the current treatment fail.  While it's common to preach here, about making one's own choices in treatment, if you don't really understand it and it would take more than a medical degree to do so, then perhaps its time to defer to others. (Charlie's points about incompetent doctors duly noted) Thinking about Josh stressing over the next choice in treatment, trying to understand it all.  It really is all too much.  They say the simplest answer is usually the correct one.  The next "logical" treatment, whenever possible, should be something fresh, but has proven results.  Unless my doctor told me otherwise, I would choose that over any trial with no substantial data to prove it would be the better choice. The idea is to just delay, delay, delay, until hopefully the silver bullet is discovered, before reaching the pearly gates.  

Gary

Thanks Celeste for posting this graphic presentation.  It is really difficult for me, a "lay person" to understand so much of the jargon, medical terminology, and chemical interactions inherent in doing melanoma research.  The pictures do help explain the data which could be valuable to many.  But I don't cut my own hair, nor would I try and represent myself in court on a serious legal matter.  There are things better left to experts, and it's why I've relied on my doctor to help guide me through the process, make suggestions on treatments.  It would seem he always has another tool in the toolbox should the current treatment fail.  While it's common to preach here, about making one's own choices in treatment, if you don't really understand it and it would take more than a medical degree to do so, then perhaps its time to defer to others. (Charlie's points about incompetent doctors duly noted) Thinking about Josh stressing over the next choice in treatment, trying to understand it all.  It really is all too much.  They say the simplest answer is usually the correct one.  The next "logical" treatment, whenever possible, should be something fresh, but has proven results.  Unless my doctor told me otherwise, I would choose that over any trial with no substantial data to prove it would be the better choice. The idea is to just delay, delay, delay, until hopefully the silver bullet is discovered, before reaching the pearly gates.  

Gary