My original diagnosis with melanoma was in November, 2011. I had been feeling a strange sensation in the genital area, but it was very random and not painful. At the time, I was focused on my mother who was going through breast cancer.. We were all so relieved when her second lumpectomy revealed that the cancer was gone and she wouldn’t need radiation. Then one day in my yoga class, I actually felt a sharp pinch and thought “that isn’t right.” So after class I examined that area and found a very angry looking lesion and thought “that looks like cancer.”
I had a biopsy done by my dermatologist and she said she wasn’t sure what it was, but thought she might have removed it all because it appeared to be on the skin surface. This was on the interior of the left labia. A few days later, I was in my office and got a phone call confirming it was cancerous. They did additional tests to determine the stage and the next thing I knew, I was referred to a gynecological oncologist at UCLA.
I had my first surgery on December 1st. They removed 7 lymph nodes from my left thigh – all negative. The surgeon also removed additional tissue from the original lesion site to ensure all the melanoma was gone. Good news was that it hadn’t spread to my lymph nodes – bad news was that my margins were not clear. So, 8 weeks later, I went back as an outpatient for the 2nd surgery. Again, I was informed that the margins were not clear, so I went in for a 3rd surgery. This time I was told that while they did see some melanin, they did not feel there was melanoma. It was recommended that I seen every 3 months for check ups.
Eight months later, I found 2 lumps in the left groin area. I was due for a 3-month check up and brought it to my doctor’s attention. He did 3 needle biopsies, which all came back negative. In the meantime, I was flying back and forth to Nashville to help look after my mother who had fallen at home and fractured several bones. She was not getting better, and, in fact, was failing quite rapidly.
My doctor ordered a PET scan in December 2012. I flew to Nashville on Christmas Eve to spend one last Christmas with my parents. We spoke once about getting a biopsy, but I wanted to know the results of the PET scan first. In January 2013, my mother was discharged from the skilled nursing home and sent home. My father was struggling to take care of her. I returned to Nashville in February to help my dad and mom passed on March 1st.
By then, my doctor had left UCLA and I wasn’t sure who I was supposed to follow up with. I called and found out there were no notes in my chart and the nurse would have to find out who I should see. This left me with a bad feeling about it. Against better judgment, I decided to wait until August when I was due for my physical. I asked UCLA to send all my files to my GP.
When I went for my check up, she was quite concerned. My PET scan showed “suspicious” activity. She sent me to an oncologist and he ordered a new PET scan so that he could compare the two. When I returned to his office for the results, he informed me that the cancer had metastasized to my liver and both lungs – Stage IV. He suggested chemotherapy, but I had read that it wasn’t very effective in treating melanoma. In fact, he admitted that I probably only had a year or two survival rate.
I went in to work and spoke to my boss, who had been treated for melanoma 30 years earlier. Feelings of anger were surfacing and told her I wouldn’t do chemo because it wasn’t the right treatment. She recommended me to a doctor at St. John’s in Santa Monica. After cooling off, I realized I had to change my attitude. I wasn’t ready to leave! My husband agreed and we were seen the next day. The doctor explained that there was a clinic nearby specializing in melanoma and that they were doing amazing clinical trials with new drugs. He made an appointment for me and they saw me the following day which was unheard of! They told me that there was a new kind of treatment – immunotherapy.
Unlike chemotherapy which kills everything, immunotherapy heightens your own immune system and is then able to attack the cancer. I was accepted into the next clinical trial in October 2013 and went through 12 weeks of treatment. I then had scans and they showed that my tumors had shrunk by 36% overall. They were very excited. Strangely, I wasn’t. I wasn’t feeling good and wondered why I didn’t share their enthusiasm. The doctor gave me a week off of treatment and was to start my 3rd round in January 2014 when my blood tests revealed that my liver enzymes had soared and was informed that I had to stop treatment – it had become too toxic for my body and I had a reaction in my liver, much like hepatitis. There was fear and uncertainty about what to do next.
He ordered a 2-month treatment of steroids which brought my liver back to normal. I did scans every 6 weeks and, miracle of miracles, the next round showed my tumors were continuing to shrink, down 50%, with no further treatment. Eventually, a PET scan was ordered in September of 2015, and there was no active cancer in my body. The liver has two spots where the tumors were, but there is no activity in them.
One of the strangest side effects I experienced was my hair fell out after I stopped treatment. My head was shaved and when my hair began growing back, it turned pure white. Next, it was my eyebrows and eyelashes – everything turned white. Gone was the brunette people had known all of their lives. This is extremely rare, and oddly enough, people love it! I have an article that I was featured in and can share with you – it explains the treatment much better than I can. Also explains that not everyone has responded as I have. I am a very lucky and rare survivor, but I feel it’s worth sharing as you never know who it may help. Please let me know if you’d like a copy.