I would like to ask you to join my 5k team either virtually or with me in Miami on January 21, 2024 for what I feel is a worthwhile cause.
As many of you know I was diagnosed in July 2021 with this rare cancer (only 2500 diagnosis/year) which started with a tumor in my left eye. Unfortunately, when the results of my biopsy came back, I was told as gently as possible that I will live with a 70% chance of liver metastasis within the first five years. There is no cure and still very few options. This is a rare disease, so the doctors that work on this are heroes to us patients and deserve mountains of support.
A Cure in Sight (ACIS) is a patient advocacy organization for ocular melanoma and has been invaluable for me. I see people in my weekly Zoom meetings that have dealt with this for over 20 years! This gives me hope. ACIS made me aware of a preventative trial and with the help of my doctors I was able to participate. Almost everyone I meet through ACIS volunteers for some sort of trial if they are able. The information from this organization is invaluable in navigating these clinical trials. I am 65 years old now and still hope to have many more years. But I see young people with this disease, and it breaks my heart. So much more research is needed, and ACIS is helping with identifying patients, getting the word out and providing financial means for patients to participate in these trials.
I have also been blessed with the support of an incredible group of family and friends and I love them all! But it is hard to explain the feeling of isolation and your reluctance to burden them. ACIS is just a phone call away and I have used that lifeline! Thank you Melody, Chantal and Loren. ACIS also makes sure that everyone who needs it has help with the financial burdens that accompany this disease.
I have been fortunate enough to be treated by some of the best doctors! My local retinal specialist recognized this right away. Thank you again. Dr. Gallogly! Following his initial diagnosis, I had an immediate appointment at Bascom Palmer Institute in Miami where I received radiation treatment in my eye. The care and the doctors there are the best in the world. Thank you, Dr. Harbour, for the radiation surgery and saving my eye, and Dr. Correa for all my follow-up care! And thank you Dr. Lutzky at the University of Miami Sylvester Cancer Center for assuring me every three months when my scans come in. You let me know that there are still things we can do. And thank you to the doctors and staff at Thomas Jefferson University Hospital in the great city of Philadelphia for making my first participation in a clinical trial easier than I thought.
In closing, I would like to ask again for your help this January for what I (eye) believe is a worthwhile cause! Dan, myself and our dog, Astro hope to see you in Miami!
Sue From Sue’s Crew
