In 2009 I was diagnosed with Stage II melanoma on the inside of my knee and had it surgically removed. It had not spread to the sentinel lymph nodes. In 2014 I found a knot in my leg which turned out to be a tumor of melanoma. The cancer stayed dormant for just over 4 years. The melanoma spread through my lymphatic system and into my lungs and liver which means I was stage IV. My oncologist was Steven O'Day a world renown melanoma expert. I was treated with 4 courses of Yervoy (Ipi) and then went through a clinical trial of PD-1 which later was approved by the FDA as Keytruda (Pem). I am now past a 2 year mark of being in remission. Words do not express the gratitude that I have for Dr. O'Day and these new immunology treatments. Please let me know if there is anything I can do or help in any way. Thank you.
Introduction: In 2009 I was diagnosed... - Melanoma Caregivers
Introduction
Hi CSHEP619! Welcome to the community. Thank you so much for sharing your story. It is great that you found such a wonderful oncologist. I am so glad to hear that you are two years NED (no evidence of disease). That is awesome!
The Melanoma Research Foundation (MRF) has some great resources if you want to get involved. I personally attend Hill Day every year through the MRF, I participated in their support group facilitator training, and I just participated in Miles for Melanoma DC.
Here is some more information about getting involved with the MRF melanoma.org/get-involved.
Thank you again for sharing your story. We look forward to getting to know you!!
I have also become involved in advocacy through the MRF, and have attended Hill Day in DC twice now. It has been a welcoming and empowering experience to be gathered with other fighters/ survivors/ advocates to be trained and supported to educate congressional staff. I echo slewis0921 thoughts!
Thank you, SLewis0921, for your reply and welcome! I have been a big fan of MRF. I have a profile on the patient story site, donate annually and volunteer/participate in Miles for Melanoma in San Diego. I will look into Hill Day and appreciate any other suggestions. Thanks again, Chris
So glad to read you are NED and responding well to treatments. God bless
CSHEP619: Thank you for your courage in participating in a clinical trial. You are part of the cohort that allowed my husband to start off with Keytruda as a first line treatment because of the trial outcomes.
We are approaching the two year of continuous treatment mark and will likely stop the infusions based on the scant research and experience of our doctor and practice, who continues to also be involved in trials as well as melanoma only cancer treatment provision. I'm wondering about your thoughts and strategies as active treatment came to an end and there is a shift to watchful waiting?
Missyrand, As it pertains to the active treatment ending, I did not have an issue in dealing with the watching and waiting approach. The current convention of wisdom is that you stay on the treatments for two years after going into remission. I believe, trust and have faith in my oncologist and his team. I also continue to see my dermatologist every 90 days for a complete check.
Throughout this process I figured early on that it does not do me any good to worry and stress over something I cannot control. (Easier said than done). I wrote about the process from start to end and found that it was very cathartic for me and raised awareness in sharing my story and treatment process with others that may know of other people who were impacted by this disease. I continue to get referrals to people that are newly diagnosed and will do everything I can to help and support others working through this process. As you know, when you first get the news it is overwhelming. I have been given a gift and I want to make sure I share that gift with others. Helping others really is rewarding.
Does that answer your question and did my response make sense?
Keep positive and fight the fight! All the best to you, Missyrand!
Seeking Melanoma Specialist West Coast
New member — husband stage IV melanoma
