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On November 23, 2009, I was diagnosed with Stage 4 Metastatic Melanoma Cancer. It is in my lung, liver and in lymph nodes of both of those organs. They are not sure where it started, but it did not appear as a typical skin irritation or mole – the doctors believe the primary likely began in my lung. The diagnosis did not come easily or quickly. Symptoms that caused me to seek out answers were neurological. It was presenting like MS. Scans of my brain only showed superficial lesions, but the CT scan also revealed something suspicious in my lung. The doctor thought that was strange and ordered a PET scan that confirmed I had lesions in the lung, liver and in lymph nodes at the lung and liver. Doctors inItially thought it presented as lung cancer. It took 15 agonizing days for the final pathology to show it was in fact melanoma caner.

Getting treated and in a study was not easy. Our journey took me from Memorial Sloan Kettering, to Vanderbilt, to calls with Texas Oncology and The Angeles Clinic, to my final destination UCLA. Though they offered a Phase III trial, I chose a Phase I trail because it guaranteed that I would get the drug – PLX-4032. It took me from November 23 to until February 28 before I started treatment.

I quickly found out that most doctors focused on the “study”, not the “patient”. If you want to survive you need to be your own advocate. There is no users guide available to find and get into a clinical trail. You need to be vigilant and research every angle. Use friends, family and the internet to find connections.

http://www.clinicaltrials.gov only told me that there was an opening at a Los Angeles hospital for PLX4032, but not which hospital. We called every major hospital before we found out the study was at UCLA Jonsson Clinic. It is funny how none of the doctors involved knew what hospitals had gotten approved. But after a long day of phone calls we found Dr. Ribas at UCLA. We sent an email on a Saturday and on Sunday got an e-mail back evening asking if we could be in LA that Thursday for a consultation. How lucky we were to find this amazing doctor with a wonderful bedside manner, uncommon for most melanoma oncologist.

My journey has just begin. I have been in the trail for seven months. My tumors have reduced by 54%. I do have side effects – loss of hair, skin rash, night sweats, nausea and diarrhea. But, all in all, not bad relative to what I hear about IL2. I am hoping this will be the magic pill and make this melanoma go away, but I know I must be prepared to have an arsenal of back-up plans in order to reach the finish line. I believe we are close to finding a solution to this disease. It is just a matter of time and the goal is to maintain until that cure comes along.

Keep the faith. Remember, some days are hopscotch kind of days, some days are like “getting nailed at dodgeball” kind of days. Just keep moving forward with a smile.