Folks that are NED out there, my hubby could use some hope :)

Celeste – 

Just curious what led them to do a SNLB on a .61mm lesion?  Wouldn't that be just Stage 1?

Mostly because I demanded it!!  How do you KNOW what stage you are if you don't do it????  If the sentinel node is negative….great.  If it is not…you are in a very different place. That was my thinking then and now there is this:http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/sentinel-lymph-node-disection-important.html

Knowing what stage you REALLY are is important in regard to treatment options, what f/u scan/recheck schedule would be recommended, and in getting insurance to pay for needed follow up.  It is very important NOT to confuse SNLB and CLND.  The sentinel node biopsy is not particularly invasive and can be done with the necessary wide excision.  Whether to do the complete lymph node disection later is a completely different decision, is certainly more invasive and comes with risks of lymphedema among other things.

Hope that helps.  Celeste

Mostly because I demanded it!!  How do you KNOW what stage you are if you don't do it????  If the sentinel node is negative….great.  If it is not…you are in a very different place. That was my thinking then and now there is this:http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/sentinel-lymph-node-disection-important.html

Knowing what stage you REALLY are is important in regard to treatment options, what f/u scan/recheck schedule would be recommended, and in getting insurance to pay for needed follow up.  It is very important NOT to confuse SNLB and CLND.  The sentinel node biopsy is not particularly invasive and can be done with the necessary wide excision.  Whether to do the complete lymph node disection later is a completely different decision, is certainly more invasive and comes with risks of lymphedema among other things.

Hope that helps.  Celeste

Celeste, I love your answer!  If I've learned nothing else from caring for both my parents with cancer/parkinson's and my husband's situation, you HAVE TO BE YOUR OWN PATIENT ADVOCATE.  It sucks that the patient is put in this role and it's overwhelming at times, but it's true. 

Also, you are completely right, all the evidence-based research shows that the SLNB is totally worth it, no matter what the depth.  It's not completely 100% but it's statistically significant in staging, recurrence rates, survival models etc.

Celeste, I love your answer!  If I've learned nothing else from caring for both my parents with cancer/parkinson's and my husband's situation, you HAVE TO BE YOUR OWN PATIENT ADVOCATE.  It sucks that the patient is put in this role and it's overwhelming at times, but it's true. 

Also, you are completely right, all the evidence-based research shows that the SLNB is totally worth it, no matter what the depth.  It's not completely 100% but it's statistically significant in staging, recurrence rates, survival models etc.

Celeste, I love your answer!  If I've learned nothing else from caring for both my parents with cancer/parkinson's and my husband's situation, you HAVE TO BE YOUR OWN PATIENT ADVOCATE.  It sucks that the patient is put in this role and it's overwhelming at times, but it's true. 

Also, you are completely right, all the evidence-based research shows that the SLNB is totally worth it, no matter what the depth.  It's not completely 100% but it's statistically significant in staging, recurrence rates, survival models etc.

Damn – that was insightful at the get go!  😉    Yay for you!  Mine started with a "bump" in my femoral cavity.  Turned out to be a 2.5cm lymph node full of disease.  Unknown primary and clueless patient…

3 years later and I am all over the science and biology of it.  At stage 4 now, 2 disappearing brain mets from gamma knife and on Taf/Mek combo for 6 months so far.  Plan to be one of the long terrm combo responders with normal LDH, < 3 disease sites and low tumor burden.  

Love what you do for all of us!  You rock.

Damn – that was insightful at the get go!  😉    Yay for you!  Mine started with a "bump" in my femoral cavity.  Turned out to be a 2.5cm lymph node full of disease.  Unknown primary and clueless patient…

3 years later and I am all over the science and biology of it.  At stage 4 now, 2 disappearing brain mets from gamma knife and on Taf/Mek combo for 6 months so far.  Plan to be one of the long terrm combo responders with normal LDH, < 3 disease sites and low tumor burden.  

Love what you do for all of us!  You rock.

Damn – that was insightful at the get go!  😉    Yay for you!  Mine started with a "bump" in my femoral cavity.  Turned out to be a 2.5cm lymph node full of disease.  Unknown primary and clueless patient…

3 years later and I am all over the science and biology of it.  At stage 4 now, 2 disappearing brain mets from gamma knife and on Taf/Mek combo for 6 months so far.  Plan to be one of the long terrm combo responders with normal LDH, < 3 disease sites and low tumor burden.  

Love what you do for all of us!  You rock.

Mostly because I demanded it!!  How do you KNOW what stage you are if you don't do it????  If the sentinel node is negative….great.  If it is not…you are in a very different place. That was my thinking then and now there is this:http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/sentinel-lymph-node-disection-important.html

Knowing what stage you REALLY are is important in regard to treatment options, what f/u scan/recheck schedule would be recommended, and in getting insurance to pay for needed follow up.  It is very important NOT to confuse SNLB and CLND.  The sentinel node biopsy is not particularly invasive and can be done with the necessary wide excision.  Whether to do the complete lymph node disection later is a completely different decision, is certainly more invasive and comes with risks of lymphedema among other things.

Hope that helps.  Celeste

Celeste – 

Just curious what led them to do a SNLB on a .61mm lesion?  Wouldn't that be just Stage 1?

Celeste – 

Just curious what led them to do a SNLB on a .61mm lesion?  Wouldn't that be just Stage 1?

Wifw on TAF/MEK combo with Lombardi/Georgetown and Dr. Atkins…NED just at the 2 year mark…stay tough…

Wifw on TAF/MEK combo with Lombardi/Georgetown and Dr. Atkins…NED just at the 2 year mark…stay tough…

Wifw on TAF/MEK combo with Lombardi/Georgetown and Dr. Atkins…NED just at the 2 year mark…stay tough…

Dang, that was before it was approved wasn't it?  Thank you for being a rattie for people like me.  You guys helped to make IL-2 safer and gave people like me hope if I responded.  I hope these newer drugs can do the same.

Just too bad they cost an arm and a leg and several have lifelong damage as a result ex. blow out their pituitary gland….

At least after IL-2 I was done and got a really nice facial peel that insurance paid for!

Anyway, I did respond and am still NED 6 years later.  Your data helps me sleep at night knowing after long term follow up, I probably won't ever hear from mel again .

Dang, that was before it was approved wasn't it?  Thank you for being a rattie for people like me.  You guys helped to make IL-2 safer and gave people like me hope if I responded.  I hope these newer drugs can do the same.

Just too bad they cost an arm and a leg and several have lifelong damage as a result ex. blow out their pituitary gland….

At least after IL-2 I was done and got a really nice facial peel that insurance paid for!

Anyway, I did respond and am still NED 6 years later.  Your data helps me sleep at night knowing after long term follow up, I probably won't ever hear from mel again .

Dang, that was before it was approved wasn't it?  Thank you for being a rattie for people like me.  You guys helped to make IL-2 safer and gave people like me hope if I responded.  I hope these newer drugs can do the same.

Just too bad they cost an arm and a leg and several have lifelong damage as a result ex. blow out their pituitary gland….

At least after IL-2 I was done and got a really nice facial peel that insurance paid for!

Anyway, I did respond and am still NED 6 years later.  Your data helps me sleep at night knowing after long term follow up, I probably won't ever hear from mel again .