Melanoma arrived on the scene and changed my life on September 7th, 2009, the day after my 45th birthday. It started with a strange feeling of numbness all over as though my body was starting to short-circuit. I went in for tests and they concluded that I likely was experiencing the onset of Multiple Sclerosis (MS). I went from being an active, healthy person without even a regular primary care doctor, to someone with a neurologist. How could this be happening to me?
Fast forward 77 days to November 23rd, I didn’t have MS. In fact, I had Stage IV Metastasis Melanoma, which means my cancer had spread to other organs of the body and I had about six months to live, eight if I was lucky. I wasn’t pleased with that prognosis and went looking for an alternate answer. I discovered that there had been no progress toward extending the life expectancy in Stage IV Metastasis Melanoma for nearly 15 YEARS!!! So, it was time to experiment and hope for a breakthrough with a clinical trial.
I hired my own personal CANCERierge – also known as my husband Mike – and we set out to navigate the cancer maze, ask questions, take notes and find a trial. It wasn’t easy, but Mike approached it with an open mind and humor – a strong medicine for any stage of cancer. After a somewhat nation-wide search, we found a trial at UCLA.
I began treatment on February 28th, 2010 (for those of you counting, I had roughly three to five months to live at this point). I started taking a drug called PLX4032. It lasted for just over three years (and so did I!). The drug—now known as ZELBORAF—stopped my cancer from growing and since then I’ve been labeled “NED” or No Evidence of Disease. I was a super responder! I responded so well that I got the side effects right with the cure—hair loss, skin rash, cysts everywhere, night sweats, nausea, diarrhea, weight gain…talk about a lousy combination!
The great news in 2015, when I was still NED, we decided to try a combination therapy instead of the wonder drug with the side effects to keep my melanoma in check. My CANCERierge and I were nervous, but we decided to BE BRAVE and go for it. As of May 2019, I’m still cancer free.
Through all of this, Mike and I learned a lot. We’ve outlined our “Helpful Hints” on our website www.fightingmelanoma.com.
But here are some cliff notes:
- If you want to survive, you need an advocate.
- Reach out to friends and family. Open up. You’re going to need them.
- YOU need to determine the right treatment path for you. Advocate for yourself!
- Get connected with the skin cancer community. The Melanoma Research Foundation became my lifeline along the way.
- Be flexible and appreciate what you have. Value each day and each moment.
- Start winning your fight!
- BE BRAVE!
The doctors never did determine where the cancer started, but instead of showing on my skin, it likely all started in my lung and spread to my liver, uterus and lymph nodes. Despite everything they didn’t know, I survived. I believe the medical community is close to finding a solution for this disease. We are now seeing long-term Stage IV survivor rates hit double digits. It is just a matter of time until we understand how to manage all types of melanoma cancers.
Until then…Be Brave!