I was diagnosed with Ocular Melanoma on December 15, 2015. In February of 2016, the eye tumour was very large so the ocular surgeon had to remove the eye, eyelids, and surrounding tissue, which is called an exenteration. In March of 2016, small tumours were discovered in my liver. My oncologist started me on immunotherapy, Yervoy and Opdiva for 1 month, followed by Opdiva for 10 months, without much success. I received all the liver directed treatments available in the US; first Radioembolization, then Valproic acid and Immunoembolizations, followed by Chemoembolizations. Nothing stopped my aggressive tumours from growing and multiplying. During this time, I had recurrence of the cancer in the open orbit. The tumours had to be removed surgically, followed by 30 days of radiation. I slept most of the summer of 2016. In January 2017, I lost the ability to walk because of a tumour in my femur. Six radiation treatments later, the pain was gone.
In May of 2017 the Immunotherapy and Valproic acid treatments were stopped. I was advised by the doctors to find a systemic trial, because I had been diagnosed with metastasis in my lungs, bones, and several subcutaneous tumors, under the skin. I didn’t feel comfortable going into a trial since the liver tumours were still growing and multiplying. I have always heard from other “Omie Homies” that the liver tumours kill you first.
I contacted Debbie Brooks, who is Dr. Stedman’s assistant, at Spire Southampton Hospital in Southampton, England. She was extremely helpful and efficient! Once the hospital received and reviewed my scans, I spoke to Dr. Matthew Wheater, who is the oncologist on the Delcath team. He asked me questions about my disease, my previous treatments, and my physical health. He assured me that I was a good candidate for Delcath. The other two consultants (the English label for doctor) are Dr. Stedman (and they are called Mr not doctor), who is the leader of the Delcath team, and Dr. Gupta who is the anesthesiologist.
My first appointment was scheduled for June 6. I was nervous and excited in the same time! This took a lot of practical planning to prepare and get to the place of the procedure. I have written some practical and money saving tips regarding what you have to do before you go at the end of this story. June arrived and my husband and I left for England. I am European so I have been in England several times, but never to Southampton. It’s a beautiful city with lots of history, pubs, stores, and a port for Cruise ships.
I was admitted to the hospital on Monday, June 5 at 4pm. Every staff member was very friendly and professional; Debbie came to visit us and made us feel right at home, followed by Dr. Stedman, Dr. Gupta, and Dr. Wheater at different times. Every doctor provided me with all the information that I needed, and answered all of my questions. Dr. Stedman explained the entire procedure in detail, including the things that could go wrong. He was very honest about his own learning process, over about 115 procedures. The one thing that I learned was that it’s important to have Delcath before the liver burden is too high, for it to be effective. Mine was 20-30% on previous scans. I felt completely at ease and confident by the end of the night.
By 9am on Tuesday morning, I was in the operating room with Dr. Gupta and his assistant. We had a nice conversation before they administered the general anesthesia. I woke up at 1pm in the ICU (Critical Care Unit in English) and felt good. I ate a sandwich and the nurses removed the catheter. Dr. Gupta and Dr. Stedman visited, and told me that the procedure went perfectly! They accomplished infusing the optimal amount of chemo into my liver. I stayed overnight and was well taken care of by the CCU nurses. The next day I returned to my room on the ward. The hallway in the regular ward is shaped like a “donut”. I walked about 10 laps that day. Part of recovery is gaining strength and putting more oxygen in the blood.
I am a very active person. I was a runner, lifted weights, practised yoga and worked as a cycling instructor for many years. I have maintained my workout schedule, on a lower level, between my various treatments. It has helped me to physically and psychologically cope with the disease. I believe that, working out to the best of one’s ability, with your doctor’s consent, will enable you to have a better life quality.
The following day I had a baseline MRI and an injection to stabilize my bone marrow. Friday I was discharged. My husband was given instructions on how to inject Heparin, which is an anti coagulant. You are invited to go back to the hospital to let the nurses do it the day before flying. This is administered to avoid blood clots on my return flight home. My husband and I walked all over Southampton that day, not at my regular speed, but it was nice to move.
I have returned to Southampton for two more Delcath treatments since then. The procedures were successful, the side effects were minimal, and I was released on Thursday. My MRI is showing regression of some of the tumors and stabilization of others. Overall this has been a very positive experience for my husband and I. We can’t say enough about the friendliness and professionalism of the entire staff, the doctors, and Debbie who puts it all together. I am now released to seek systemic treatment for my extrahepatic tumors.