Gamma Knife #3 and Pet Scan Results

January 2017

After letting the latest news sink in a little I'm feeling much better. I had gamma knife radiation on December 29th at which they found four very small brain lesions. We zapped all four and I'm hoping and praying that they are shrinking or gone already. In a couple more weeks I'll have a follow up MRI to make sure.

Around the same time of the brain issues I started having a really intense pain in my hip. It was pretty painful to walk for about three weeks so my doctor decided to order an MRI of my spine and hip just to make sure nothing was going on there. The MRI showed two things, first a herniated disc in my lower spine... and also an area in my left pelvic bone which lit up but was impossible to tell if it was melanoma or something else. This prompted a pet scan order. Pet scans are very good at detecting even a very small amount of cancer.

Now comes the interesting part. My pet scan lit up like crazy! Several spots throughout my back and side, groin and scapula. My doctor looked very solemn and said it was time to move to the next treatment option which we have been discussing. I asked him to show me where the spots were on my body. Up until this I have been able to feel almost every single tumor I've had, especially the subcutaneous ones (the ones under the skin in the fatty tissue). I was in disbelief that I could have that many and not feel any of them. He lifted up my shirt to feel the spots that lit up and realized they were exactly where my tattoos are. I have two rather large tattoos on my back and side which I got about twelve years ago. I have noticed that they are a little swollen and inflamed but didn't think very much of it. They have been doing this off and on for the last year, ever since I tried the immunotherapy ipilimumab. Well it turns out that the ipilimumab has given me an allergic reaction to the red ink in my tattoos and is causing pain and inflammation, and pet scans pick up areas of severe inflammation. Lucky for me the major areas along my back and side were lighting up from my tattoos and not from cancer!

The lymph node in my groin also lit up but is not palpable. It could possibly be full of tattoo ink from my body trying to dissolve and get rid of my tattoos. This leaves only the spot in my scapula with no explanation. My doctor can't really tell if it's a spot of melanoma or not, and since this may be the only spot with no explanation we decided to hold off on starting the new treatment and have an MRI of the scapula to tell for sure what it is. Last year I did have a spot of melanoma in that scapula that was surgically removed so it's very possible that it's back in the bone or in the marrow space. I'm keeping my fingers crossed for now and trying my best to stay positive.

My hip did not light up at all, which leads us to believe that the severe pain I've been having in my hip is from the herniated disc. The pain is completely gone now and I'm feeling much better!

This weekend my husband and I attended a seminar in Portland and were able to listen to some of the best melanoma specialists in the region speak about the newest treatment, and what's happening in clinical trials. It was a very uplifting event that I was grateful to be a part of. It gives me hope to see that so many amazing minds are working to find successful treatments for fighters like myself. There's a lot of really big things happening in the world of melanoma and I am determined to hold on long enough for something to come along that will help me. I have an incredible support system of friends and family and an incredible faith that will keep me going until that time comes. I've said it before, but the hardest part of this whole journey is learning to have patience, and faith. Every day is a struggle with the unknown future. All I can do is live in the present and never take a single day for granted.

Pet Scan Attire