On November 23, 2009, I was a 45 year old mother of a 13 year old, and I was diagnosed with Stage 4 Metastatic Melanoma Cancer. The cancer is in my lung, liver and in lymph nodes of both of those organs. My doctors have never determined where the “primary” is located (where the cancer started), though they do know it did not appear as a typical skin irritation or mole. In fact, my doctors believe the primary was likely in my lung. The diagnosis did not come easily or quickly.
Symptoms that caused me to seek out answers were neurological, and the initial suspicion was that I had Multiple Sclerosis. A CT scan of my brain showed only superficial lesions, and that scan led to a CT scan of my spine. Though this scan revealed no lesions, it did reveal something suspicious in my lung. My doctor immediately sent me to get a PET scan that confirmed I had cancer not only in my lung, but also in the liver and in lymph nodes of the lung and liver. After 10 agonizing days the final pathology determined it was metastatic melanoma cancer.
The prognosis not good.
Melanoma protocols have stalled for nearly 15 years, with no progress towards extending life expectancy for Melanoma Stage 4 patients. Clearly, the odds were not with standard protocols so my only remaining option was to go into a clinical trial.
Getting into a clinical trial and getting treated was not easy. I started at Georgetown University Hospital, but they did not have a focus on melanoma. I met my first melanoma specialist at Memorial Sloan Kettering in New York, but timing issues left me without an option in the clinical trial I wanted to enter. My doctor at MSK suggested Vanderbilt, but that didn’t work out, either. I then tried Texas Oncology, The Angeles Clinic and UCLA. It took me from November 23 to until February 28 before I started treatment at UCLA with PLX4032. I’ve been in this clinical trial for 15 months.
PLX4032 has not only stopped my cancer from growing, but it’s now only a fraction of its original (baseline) size. My recent PET/CT, April 7 2011, showed the melanoma was not progressing, nothing lit up on the PET. I’m hoping that PLX4032 is the magic pill that makes my melanoma go away. I have had side effects – hair loss, skin rash, cysts everywhere, night sweats, nausea and diarrhea. But, all in all, not bad relative to what I could have happened.
During this odyssey I learned some interesting facts, but the most interesting is that, at this level of treatment, most doctors are not focused on the patient’s health, but on the study’s results. If you want to survive, you need to be your own advocate. There is no “Cancer for Dummies” users guide available. YOU are the one who needs to do the research, evaluate clinical trails and determine the right path for you and your disease. You need to be vigilant and research every angle. You need to network with friends, family and friends of friends. You need to be computer savvy.
I believe that the medical community is close to finding a solution to this disease. It is just a matter of time, and the goal is to hang in there until that cure comes along.
To find out more about my journey to fight melanoma cancer check out my caring bridge webpage: http://www.caringbridge.org/visit/cheryl_stratos/journal