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The cure for Ocular Melanoma begins with me.
Ocular melanoma is a rare cancer with only 6 in a million diagnosed in the US per year. There is no cure for OM and 50% of those diagnosed will develop metastatic disease with the majority being to the liver, lungs, brain and bones. There are no adjuvant therapies that can be taken after diagnosis to stop the disease from spreading.
I was diagnosed with primary OM in my left eye August 1, 2001 and in April 2020 was diagnosed with metastatic disease in my lungs.
Along my journey with OM I have lost several friends to this disease and this has to stop. I fundraise for MRF to hopefully fund a cure! Please consider a donation to help this cause close to my heart!
Here is a blog post I wrote recently for MRF regarding hope.
Being part of a rare community is challenging. As humans we believe we are in control of our destinies and our future. When you first hear the words “You have ocular melanoma” all of that is in jeopardy and you are rapidly inserted into a vortex of uncertainty, panic and the unknown. A new journey begins, one for which you have no plan or map.
The journey is scan, pray, wait and watch. We are told that 50% of those diagnosed will develop metastatic disease and while none of us are a number, it is a daunting percentage.
In 2011 when I was diagnosed, there were few treatment options for metastatic disease and none of them approved by the FDA. There was no defined scanning or treatment protocol. The median survival for someone with metastatic disease was 6-9 months.
I turned 39 eight days after diagnosis and my children were ages 4, 6 and 9. The thought of not watching them grow up, not being there when they graduate, when they’re sad, when they need a hug and when they eventually “fly” on their own haunts me since that day, as I bargain for time.
My dreams of growing old and sharing my future with my high school sweetheart husband feels tenuous. We have never had a dream of the future that didn’t include each other.
After diagnosis a new journey begins and the ever looming presence of cancer is along for the ride. Every decision gets weighed with cancer in mind.
While most of my peers walk through this phase of their lives not fearing their mortality, I bargain, measure and hope for more time.
Finding my community of fellow “hope seekers” became a lifeline amidst the storm. Together as a community we fundraise, spread awareness and grow a community united to seek better treatment options and ultimately a cure.
In January 2020 a group of us had the privilege of speaking at the FDA about the need to fast track treatments for rare cancers and especially ocular melanoma. We described the impact of living with a diagnosis without the availability of treatments besides clinical trials. About the agony of waiting for the long process of approval to take place and of finally hearing “there are no more options.” I walked away feeling hopeful, inspired and a little more powerful.
Hope is a trendy word that gets tossed around easily by most people. You simply have to open social media and the word hope will jump out at you, but it is an important, powerful verb. Without hope, that looming cancer cloud becomes larger and at times will envelop you.
This past month the OM community got a large dose of hope when tebentafusp (now known as Kimmtrak) was approved by the FDA for the treatment of HLA-A 02:01 positive ocular melanoma patients with metastatic disease.
For me and countless others it means the gift of time, my most treasured gift.
In April 2020 I was diagnosed with Stage 4 metastatic disease in my lung but was not eligible for the tebentafusp trial due to the size of my tumor. I am HLA-A 02:01 positive and thus began the time clock of waiting for FDA approval, more waiting, more scanning. With the recent approval of tebentafusp (Kimmtrak) I now have an open door to treatment.
But much more than this victory, like the hiker that plants the flag on Mt. Everest we now have a flag and renewed hope to plant more flags along our journey for expanded treatments and the eventual cure. Our small but mighty community are change makers, hope ambassadors and strong voices for a future where we find a cure, and this is only the start.
I find myself reflecting on those who made this possible, who participated in the trials and who are perhaps no longer physically present. I hope they are rejoicing in this victory, and I am grateful to each one of them!
There is more to be done and a long way to go, but the finish line is in sight. The energy, enthusiasm and encouragement from patients, survivors, families, friends, caregivers, and the medical community impacts many lives and many future.
Step up and donate to Miles for Melanoma today.
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