Brand new initial diagnosis – Please Help with the ” Now what?”

Dear anon,

Sorry for what LO is dealing with. You have found a wonderful resource in this forum and many of the questions you asked have been discussed previously.  You will learn a good deal by using the search tool here.  Additionally, you will probably gain a bit more support and info by choosing a "name" other than anon, since people will know "who you are" should you have follow-up questions.

Whether to do, or not to do, sentinel node biopsy…especially followed by a complete lymphadenectomy if the sentinel node is positive… is controversial among patients and researchers.  You can find legitimate ways to argue both sides of the issue.

I had a melanoma lesion to my back in 2003 and am glad I had the sentinel nodes removed…one was positive….followed by a complete lymphadenectomy (given the positive node)…to my right axillae.  I think it bought me a great deal of time back when melanoma therapies were few and far between.  However, you should also know that I progressed to Stage IV with brain and lung mets in 2010.  When a lesion is on the back…sentinel nodes may be in axillae or groin depending on location and lymph flow.  I have had no significant complications (like limited range of motion or lymphedema) but some are not so lucky.  Here is an article addressing removal of the sentinel node:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/lymph-node-removal-after-superficial.html

Many studies looking at long term effects of lymph node removal are ongoing.  However, there was a study out in 2015 whose data did NOT indicate that such surgery provided benefit.  On the other hand…if testing could be done on the node, it is possible that better treatment choices could be made (though how available such testing is at this time is unclear):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/06/asco-2015-stage-iiia-melanoma-deciding.html

Time frame to surgery from diagnosis depends a lot on where you live and what sort of center you are going to.  I strongly recommend finding a melanoma specialist.  Much has changed in melanoma world in the past 4 years and a general oncologist is not your best bet for state of the art service.  Derm refers to surg then the process is kicked back to oncology.  Find a melanoma specialist!!!!!! 

Pre-testing depends on the patient's age and health.  Post op limitations have the same implications.  Groin locations generally take more recovery time than axillae.  A simple sentinel node biopsy with removal of wide margins is not as big a deal as complete lyphadenectomy obviously…with the later requiring drains, etc.  The former takes place first….followed by the later as indicated and as determined by what the patient and doc thinks best.

Treatment offered depends on staging of melanoma.  Unresectable Stage III and Stage IV melanoma has 2 types of FDA approved treatments:

1.  Immunotherapy: 

Ipilimumab (Yervoy)…4 IV infusions with 3 weeks between doses.  Usually administered in oncology setting…go in for infusion…go home

Anti-PD1:  2 products – Nivolumab (Opdivo) and Pembrolizumab (Keytruda)…dosing schedules vary.  IV infusion.  Get infusion at oncology setting, go home.  Nivo is up to become first line option.  Right now, both anti-PD1 products are second line (per FDA approval guidelines) to be given after the patient has tried and progressed on ipi and BRAF inhibitors, if BRAF positive.  However, some folks (like members on this forum and Jimmy Carter) have gained approval to use anti-PD1 as a first line drug at the start.

Note:  Interferon remains available (and controversial) for patients not advanced to Stage III/IV but has long been proven not to enhance life span. It is often injections the patient takes at home.  IL2 can have good results for a few patients, but is very toxic and is given in hospitial, often intensive care…but when it does work it works well.

2.  BRAF inhibitors:

There are several and should be combined with a MEK inhibitor to increase effectiveness, duration of that effect, and minimize side effects.  You need BRAF testing of the melanoma lesion to determine if the patient is BRAF positive or not.  Very important to have done ASAP.

If there is a positive node…the next question becomes…Do lymphadenectomy or not?  and  What about the rest of the body?  You will need to find out about CT scans.  If something shows up in the body…MRI of the brain would be needed then…if not at the outset.

Hope this helps. Wishing you and LO my best.  Celeste

Dear anon,

Sorry for what LO is dealing with. You have found a wonderful resource in this forum and many of the questions you asked have been discussed previously.  You will learn a good deal by using the search tool here.  Additionally, you will probably gain a bit more support and info by choosing a "name" other than anon, since people will know "who you are" should you have follow-up questions.

Whether to do, or not to do, sentinel node biopsy…especially followed by a complete lymphadenectomy if the sentinel node is positive… is controversial among patients and researchers.  You can find legitimate ways to argue both sides of the issue.

I had a melanoma lesion to my back in 2003 and am glad I had the sentinel nodes removed…one was positive….followed by a complete lymphadenectomy (given the positive node)…to my right axillae.  I think it bought me a great deal of time back when melanoma therapies were few and far between.  However, you should also know that I progressed to Stage IV with brain and lung mets in 2010.  When a lesion is on the back…sentinel nodes may be in axillae or groin depending on location and lymph flow.  I have had no significant complications (like limited range of motion or lymphedema) but some are not so lucky.  Here is an article addressing removal of the sentinel node:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/lymph-node-removal-after-superficial.html

Many studies looking at long term effects of lymph node removal are ongoing.  However, there was a study out in 2015 whose data did NOT indicate that such surgery provided benefit.  On the other hand…if testing could be done on the node, it is possible that better treatment choices could be made (though how available such testing is at this time is unclear):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/06/asco-2015-stage-iiia-melanoma-deciding.html

Time frame to surgery from diagnosis depends a lot on where you live and what sort of center you are going to.  I strongly recommend finding a melanoma specialist.  Much has changed in melanoma world in the past 4 years and a general oncologist is not your best bet for state of the art service.  Derm refers to surg then the process is kicked back to oncology.  Find a melanoma specialist!!!!!! 

Pre-testing depends on the patient's age and health.  Post op limitations have the same implications.  Groin locations generally take more recovery time than axillae.  A simple sentinel node biopsy with removal of wide margins is not as big a deal as complete lyphadenectomy obviously…with the later requiring drains, etc.  The former takes place first….followed by the later as indicated and as determined by what the patient and doc thinks best.

Treatment offered depends on staging of melanoma.  Unresectable Stage III and Stage IV melanoma has 2 types of FDA approved treatments:

1.  Immunotherapy: 

Ipilimumab (Yervoy)…4 IV infusions with 3 weeks between doses.  Usually administered in oncology setting…go in for infusion…go home

Anti-PD1:  2 products – Nivolumab (Opdivo) and Pembrolizumab (Keytruda)…dosing schedules vary.  IV infusion.  Get infusion at oncology setting, go home.  Nivo is up to become first line option.  Right now, both anti-PD1 products are second line (per FDA approval guidelines) to be given after the patient has tried and progressed on ipi and BRAF inhibitors, if BRAF positive.  However, some folks (like members on this forum and Jimmy Carter) have gained approval to use anti-PD1 as a first line drug at the start.

Note:  Interferon remains available (and controversial) for patients not advanced to Stage III/IV but has long been proven not to enhance life span. It is often injections the patient takes at home.  IL2 can have good results for a few patients, but is very toxic and is given in hospitial, often intensive care…but when it does work it works well.

2.  BRAF inhibitors:

There are several and should be combined with a MEK inhibitor to increase effectiveness, duration of that effect, and minimize side effects.  You need BRAF testing of the melanoma lesion to determine if the patient is BRAF positive or not.  Very important to have done ASAP.

If there is a positive node…the next question becomes…Do lymphadenectomy or not?  and  What about the rest of the body?  You will need to find out about CT scans.  If something shows up in the body…MRI of the brain would be needed then…if not at the outset.

Hope this helps. Wishing you and LO my best.  Celeste

Dear anon,

Sorry for what LO is dealing with. You have found a wonderful resource in this forum and many of the questions you asked have been discussed previously.  You will learn a good deal by using the search tool here.  Additionally, you will probably gain a bit more support and info by choosing a "name" other than anon, since people will know "who you are" should you have follow-up questions.

Whether to do, or not to do, sentinel node biopsy…especially followed by a complete lymphadenectomy if the sentinel node is positive… is controversial among patients and researchers.  You can find legitimate ways to argue both sides of the issue.

I had a melanoma lesion to my back in 2003 and am glad I had the sentinel nodes removed…one was positive….followed by a complete lymphadenectomy (given the positive node)…to my right axillae.  I think it bought me a great deal of time back when melanoma therapies were few and far between.  However, you should also know that I progressed to Stage IV with brain and lung mets in 2010.  When a lesion is on the back…sentinel nodes may be in axillae or groin depending on location and lymph flow.  I have had no significant complications (like limited range of motion or lymphedema) but some are not so lucky.  Here is an article addressing removal of the sentinel node:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/lymph-node-removal-after-superficial.html

Many studies looking at long term effects of lymph node removal are ongoing.  However, there was a study out in 2015 whose data did NOT indicate that such surgery provided benefit.  On the other hand…if testing could be done on the node, it is possible that better treatment choices could be made (though how available such testing is at this time is unclear):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/06/asco-2015-stage-iiia-melanoma-deciding.html

Time frame to surgery from diagnosis depends a lot on where you live and what sort of center you are going to.  I strongly recommend finding a melanoma specialist.  Much has changed in melanoma world in the past 4 years and a general oncologist is not your best bet for state of the art service.  Derm refers to surg then the process is kicked back to oncology.  Find a melanoma specialist!!!!!! 

Pre-testing depends on the patient's age and health.  Post op limitations have the same implications.  Groin locations generally take more recovery time than axillae.  A simple sentinel node biopsy with removal of wide margins is not as big a deal as complete lyphadenectomy obviously…with the later requiring drains, etc.  The former takes place first….followed by the later as indicated and as determined by what the patient and doc thinks best.

Treatment offered depends on staging of melanoma.  Unresectable Stage III and Stage IV melanoma has 2 types of FDA approved treatments:

1.  Immunotherapy: 

Ipilimumab (Yervoy)…4 IV infusions with 3 weeks between doses.  Usually administered in oncology setting…go in for infusion…go home

Anti-PD1:  2 products – Nivolumab (Opdivo) and Pembrolizumab (Keytruda)…dosing schedules vary.  IV infusion.  Get infusion at oncology setting, go home.  Nivo is up to become first line option.  Right now, both anti-PD1 products are second line (per FDA approval guidelines) to be given after the patient has tried and progressed on ipi and BRAF inhibitors, if BRAF positive.  However, some folks (like members on this forum and Jimmy Carter) have gained approval to use anti-PD1 as a first line drug at the start.

Note:  Interferon remains available (and controversial) for patients not advanced to Stage III/IV but has long been proven not to enhance life span. It is often injections the patient takes at home.  IL2 can have good results for a few patients, but is very toxic and is given in hospitial, often intensive care…but when it does work it works well.

2.  BRAF inhibitors:

There are several and should be combined with a MEK inhibitor to increase effectiveness, duration of that effect, and minimize side effects.  You need BRAF testing of the melanoma lesion to determine if the patient is BRAF positive or not.  Very important to have done ASAP.

If there is a positive node…the next question becomes…Do lymphadenectomy or not?  and  What about the rest of the body?  You will need to find out about CT scans.  If something shows up in the body…MRI of the brain would be needed then…if not at the outset.

Hope this helps. Wishing you and LO my best.  Celeste

1- yes snlb and wle need to be done for staging.
2- I had complete LND because of palpable node but i had drains for 3 weeks. I was getting around pretty well after 1 week.
3- my surgery took place 2 weeks after mole was found malignant.
4- I had a ct and pet scan before my surgery.
5- usually the surgeon would do slnb and wle then medical oncologist will take over for treatment needed if any.
6- I think about 4 weeks after surgery is pretty standard. They want you generally healed from surgery.
7- immunotherapy is administered in the hospital by infusion usually takes from 30-90 min once every 2 or three weeks. Immunotherapy includes yervoy a ctla-4 also keytruda and nivolumab both pd-1. Interferon is another very controversial immunotherapy that is administered by first 4 weeks in hospital then injection for 48 weeks at home. Targeted therapy is taken in a pill for but your melanoma must have the b-raf v600 e or k mutation. The doctor should test for this. Roughly 50% test positive for b-raf
8- use your phone and record the conversation with your doctors.
9-just wanted to wish you luck…there are many therapies out there to learn about and there is hope. Your head will be spinning for the first month or 2 but just take it one step at a time. You can only deal with facts that you know. I know its easier said than done but it doesn’t pay To diagnose yourself before you have all the facts pathology and doctor recommendations.

1- yes snlb and wle need to be done for staging.
2- I had complete LND because of palpable node but i had drains for 3 weeks. I was getting around pretty well after 1 week.
3- my surgery took place 2 weeks after mole was found malignant.
4- I had a ct and pet scan before my surgery.
5- usually the surgeon would do slnb and wle then medical oncologist will take over for treatment needed if any.
6- I think about 4 weeks after surgery is pretty standard. They want you generally healed from surgery.
7- immunotherapy is administered in the hospital by infusion usually takes from 30-90 min once every 2 or three weeks. Immunotherapy includes yervoy a ctla-4 also keytruda and nivolumab both pd-1. Interferon is another very controversial immunotherapy that is administered by first 4 weeks in hospital then injection for 48 weeks at home. Targeted therapy is taken in a pill for but your melanoma must have the b-raf v600 e or k mutation. The doctor should test for this. Roughly 50% test positive for b-raf
8- use your phone and record the conversation with your doctors.
9-just wanted to wish you luck…there are many therapies out there to learn about and there is hope. Your head will be spinning for the first month or 2 but just take it one step at a time. You can only deal with facts that you know. I know its easier said than done but it doesn’t pay To diagnose yourself before you have all the facts pathology and doctor recommendations.

1- yes snlb and wle need to be done for staging.
2- I had complete LND because of palpable node but i had drains for 3 weeks. I was getting around pretty well after 1 week.
3- my surgery took place 2 weeks after mole was found malignant.
4- I had a ct and pet scan before my surgery.
5- usually the surgeon would do slnb and wle then medical oncologist will take over for treatment needed if any.
6- I think about 4 weeks after surgery is pretty standard. They want you generally healed from surgery.
7- immunotherapy is administered in the hospital by infusion usually takes from 30-90 min once every 2 or three weeks. Immunotherapy includes yervoy a ctla-4 also keytruda and nivolumab both pd-1. Interferon is another very controversial immunotherapy that is administered by first 4 weeks in hospital then injection for 48 weeks at home. Targeted therapy is taken in a pill for but your melanoma must have the b-raf v600 e or k mutation. The doctor should test for this. Roughly 50% test positive for b-raf
8- use your phone and record the conversation with your doctors.
9-just wanted to wish you luck…there are many therapies out there to learn about and there is hope. Your head will be spinning for the first month or 2 but just take it one step at a time. You can only deal with facts that you know. I know its easier said than done but it doesn’t pay To diagnose yourself before you have all the facts pathology and doctor recommendations.