SteveR13

Went back to MDA and they did a full body CT and Brain MRI. Both negative so at this point I am NED. The surgeon didn't feel a CLND was necessary and we are going with Opdivo Immunotherapy once a month for 1 year with scans every three months. 

Update:

So I had my appointment at MD Anderson. Again the point was reinforced that the WLE should not be done before the SLNB. However Dr. Ross believed that he would be able to get a lymph node to light up. Along with various other tests they sent me down for a Lymposcintigaphy which is basically the dye and mapping part of the SLNB. The lymph nodes on both sides of my neck lit up and although they couldn't do the SLNB while I was there I am scheduled to go back on the 31st to have it done which means I should have my results by Monday the 5th at the latest.

SaraZO I believe the inefficiency was with my surgeon. I think if you have someone that has a better understanding of this they should be able to find one. In fact my time at MD helps really understand how dangerously under qualified most of the people I have seen about this have been so far. I am now a big fan of mapping it before going under for the full surgery. 

Melanoma Mike That dye can be brutal. I remember waking up from the first SLNB pretty out of it from the anesthesia with the surgeon telling me he didn't cut into me. I started to wonder shortly after why my neck hurt so much if they didn't cut me. I the nurse explained the dye can burn and burn it did for about 2 days. I had readied myself for the same thing for 2 days following the lymphoscinigraphy but apparently it is a different dye and although it burns going in the pain only lasts 2 seconds and is gone for good after.

Steve

Steve

I am now going to be working with a melanoma specialist at MD Anderson so hopefully it all gets sorted out.

I’m sorry to hear you are going through this. I have been referred to MD Anderson for any possible trials and based on my current situation a second opinion. My appointment is Oct 18th so I let you know what they tell me. 

This originated basically where that bone sticks out at the top of your spine on the back of the neck. Looking back at this I am also fairly surprised that the dermatologist didn’t slow down and follow the normal course of action. When my GP called to tell me the biopsy was melanoma she said it was in situ which made me feel better until a little research told me that couldn’t be true. It is possible the dermatologist didn’t really read it and just took her word for it. Either way I won’t me going back. My Oncologist said that the PET could be unreliable but he has referred me to MD Anderson to see about any trials and I will use that to get a second opinion on what’s next.