Story FMR’s news is beginning to travel around the globe, and we are proud to share the story of a Stage 4 melanoma survivor from the USA, in her own words. A brave and inspirational lady.
I was diagnosed in July 2010 with stage 3b melanoma. I am advanced stage 4 metastatic melanoma with recurrent brain mets.
As of this writing I have been NED (no evidence of disease) 3 years & 10 months.
In 2010 a tiny flat freckle on my right bicep started to change. It bled and scabbed over, fell off and repeated. I was in to see the dermatologist within the month. I pushed for a biopsy, although the doctor did not think it was cancerous nor a biopsy necessary. It came back as melanoma, as I suspected. I was referred to an oncologist who specialized in melanoma to remove the nefarious freckle and for a sentinel node biopsy. Two lymph nodes were removed, one came back tumorous. An additional 12 were removed in a subsequent surgery done by another surgeon. (I point this out, because it’s important you feel comfortable with all of your medical team, and if not find a new doctor. (*** Follow your gut) I did, and found that the original surgeon should have removed many more nodes than just the two. Standard of healthcare in the US at that time recommended 12-14 nodes should have been removed when one node was cancerous! Not sure if that standard is still the same now.)
I had never heard of anyone surviving cancer after it had made it so far as the lymphatic system. In 2010 there weren’t many options available for treatment for people with melanoma and not as many treatment options as there are today. After that diagnosis I went home to die. I was not interested in chemo and was preparing for the worst. I had three wide excisions as the margins were continuously dirty. My brother, my kids and my grandkids begged me to take immunotherapy (chemo). I finally caved and agreed on the last possible day to start Interferon (Dec 2010). I resolved to be around for them as they still needed me.
In early 2011, I was still taking Interferon when I had a recurrence at the primary site and underwent a few more surgeries to get clean margins. I had no more skin to give so I had a skin graft taken from my leg. The recovery from the graft was by far the worst on my leg. I continued with my 6 month regimen for scans and all were great until July 2014.
I had just returned from one of my bucket list trips to England, Scotland and Wales. OMG, that was a horrible trip. I suffered from the worst headaches, dizziness, confusion, vision issues, and being lost constantly I have ever experienced in my entire life. I thought I was going to die on the cobble stone streets of a foreign country! I finally made it home. I had returned to work and was feeling so fatigued and had headaches that took me to my knees. I had to leave work to take naps many days. I thought I was suffering from jet lag. On the fifth day back I got lost on my way to work. I was forgetting words and my blood pressure was off the charts. I had worked in the medical field (ironically cancer research) and spoke with a nurse colleague who urged me to call my doctor. I thought I was having a stroke. My doctor told me to get to the ER immediately.
The good news was all my labs looked great, the bad news… The MRI showed I had a brain tumor the size of 2 golf balls (approx. 27 mm) in my right temporal lobe and my brain was so swollen it was cocked at a 45 degree angle. The ER staff were in awe I was still upright and breathing! They could not believe I did not bleed out.
I was transferred to another hospital by ambulance and scheduled for surgery five days later. It took that long to get my brain swelling down and to get all the over-the-counter drugs out of my system so the surgeon could safely perform the surgery. The surgery posed several risks. I could die on the table, lose my sight, lose my hearing and lose my cognitive memory. I made peace with transitioning over the rainbow bridge, if that was to be the outcome. I had all my friends and family come for a ‘living wake,’ just in case things did not turn out so well. We shared some memories and had a few good laughs.
I made it through. I was considered a unique subset x3 as the tumor was operable, the doctors were confident they got it all, and I woke up with most of my memory in tact, and I could hear and see. I was home 4 days later. I did not have to go to a rehab facility, and I was able to do my physical, speech, and occupational therapies as an out patient.
I underwent 5 sessions of targeted stereotactic radiation in August 2014. All scans were good until January 2015. The tumor had recurred and was 10 mm. The neurosurgeon scheduled another craniopathy for the following week. I was on board for another brain surgery but asked if there were some alternatives I could consider before taking that route. There were… Since I had not had WBR (whole brain radiation) prior – because with whole brain you only get one shot – I underwent Gamma Ray Knife surgery in Feb 2015 and started Yervoy (an immunotherapy targeted therapy) treatment in March 2015. I was unable to complete the therapy due to severe colitis that hospitalized me. I had completed 3 of the 4 infusions.
My last scans were in September 2018 and I have now have graduated to having scans every 4-5 months!
I believe in miracles and I have received more than a few! If by sharing my story, I can bring hope and joy to others and possibly help others get through the darkness I will be happy.
FIGHT THE BEAST!!!