May is Skin Cancer Awareness Month. Indianapolis Moms Blog asked Jessica to share her story to help spread awareness of skin cancer because it’s never too late to reduce your risk!
I was diagnosed with Stage IV Melanoma at age 30 on October 23rd, 2013 with only a 15% chance of surviving 5 years and less than 4 months to live without treatment.
It was just 3 weeks after my first and only son was born that they discovered a 2 inch tumor on my spinal cord and over 10 smaller lesions throughout my skeletal system where the Melanoma had eaten holes through my bones. I had severe back pain the second half of my pregnancy and I could barely walk. However, my doctors still thought it was just pregnancy related. I remember during the last 2 months of my pregnancy I basically laid on the couch in one specific position that I could tolerate. Thankfully my son decided to come 2.5 weeks early, because we found out later that if he didn’t, the spinal tumor would’ve eventually broken my back and paralyzed me. Additionally, if I would’ve delivered traditionally and not via c-section, it would’ve broken my back on the delivery table and I would’ve been paralyzed.
After the tumor was discovered, things happened quickly. My treatment consisted of a 5 hour spinal cord surgery, followed by 11 rounds of radiation to my spine, and 2.5 years of Yervoy + Leukine immunotherapy treatment.
As it turns out, I am one of the lucky few people that Yervoy worked for. Not only did it work, I had a complete response, which is rare for Yervoy, where only 5% have a complete response like I did. The side effects weren’t fun, but they were tolerable. I had a full body skin rash, hair loss, colitis, nausea and vomiting, bone aches, and extreme fatigue. Out of it all, the fatigue was by far the worst. I slept so much at the beginning that the Fall of 2013 and Spring of 2014 is still a blur to me.
In Oct 2014, I received my first No Evidence of Disease (NED) scan and have continued to remain NED for 3.5 years. My last treatment was a little over 2 years ago in Feb 2016. For 2.5 years, I received an infusion every 3 months and gave myself shots at night for 14 days on, 14 days off.
The reoccurrence rate is very high (87%) so they watch me very closely. Up until recently, I had a CT or PET scan every 3 months and a brain and full back MRI every 6 months. Just recently, I graduated to scans every 5 months instead of 3 months. We will continue this surveillance for another 2-3 years, but bare minimum, I will get at least one annual scan for the rest of my life.
Melanoma is sneaky and can lie dormant in your body for years before becoming active again. If there is anything left in my body, I have faith that my immune system can keep it at bay. If for some reason it doesn’t, and I do have a reoccurrence, the amount of new treatment available is promising! The current first line of treatment for Stage IV Melanoma was not even available when I was first diagnosed!
In addition to all this, my son was also scanned the first year of his life at Cincinnati Children’s Hospital because Melanoma is one of the only cancers that can spread to the baby in utero. It is rare, but it does happen so he had a CT scan at 6, 9, and 12 months old, but thankfully he is in the clear. He has a higher risk of Melanoma than the average kid simply because I had it. I am diligent about teaching him about sun protection to giving him the knowledge and tools to help him avoid any extra risk.
The reason I share my story is that I’ve learned so much since my diagnosis and if I am able to help at least ONE person avoid what I went through, then sharing my story will be worth it. It’s such a great feeling when people tell me they went to the dermatologist because of me, or stopped using tanning beds, or started using sunscreen.
If caught early, Melanoma is highly curable and treatable. If not, Melanoma is like a little seed that gets into your body, grows roots, and can go anywhere it wants. Once it is internal, the survival stats go way down (think months to live and 15% survival rate!). Don’t let this happen to you! You can decrease your chances of Melanoma by avoiding tanning beds and practicing sun safety. It’s never too late to reduce your skin cancer risk!
Thank you for sharing your story. I just receive my melanoma diagnosis 2 days ago. The spot on my back is teeny tiny, so I’m hoping I’m not in any advanced stage. I’ll know more in a week. I’m reading up as much as I can, and just wanted you to know I appreciated you sharing your story.
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