Survivor Spotlight will continue as a regular MRF Newsletter feature, highlighting the courage and insight of melanoma survivors. In this issue we spotlight Kim Schofield Wheeler (pictured below with husband Dick).

I have been asked to write my story for this newsletter with the intent of offering some hope and strength for those having to battle melanoma.

I was 19 years old when I first went to a doctor because of a large, bleeding mole on the back of my right calf. At the time, I had never even heard of melanoma. This was in 1975. The primary was excised, misdiagnosed by two pathology departments and, as a result, nothing more was done. In my visit the following year, enlarged lymph nodes in my groin were discovered, a local biopsy was performed and malignant cells were found. A radical node dissection was performed and due to the amount of positive nodes, I was diagnosed as Stage IV. I really didn't realize the implications. This was before Clark and Breslow levels were used for diagnosing primaries, no statistics were known by me and I was just learning about the disease called melanoma.

At the time of my node surgery in 1976, I was fortunate to be a patient of a physician who was trying a new vaccine combination of MER and BCG. I was the youngest melanoma patient he had ever seen. He was Malcolm Mitchell, M.D., a now world renowned physician known for his work with vaccines.

That began the start, of what seems to me, of always being in the right place at the right time whenever I had a recurrence. In order, since 1976, I have had a radical groin node dissection, 6 months of MER/BCG injections, 12 months of Cytoxan and DTIC, an Isolated Limb Perfusion (ILP) on my right leg with Nitrogen Mustards, multiple surgeries to remove cutaneous melanomas, Intra-arterial infusions of Cisplatinum and DTIC for right leg lesions, multiple surgeries to remove subcutaneous (subq) tumors below the right knee, 12 months of high dose Interferon injected directly into 17 subcutaneous tumors on the right leg, resected bone metastasis (met) in the right elbow with radiation and chemo-infusion treatments, radiation for bone mets in my left knee and left ankle, 6 months of an autologous vaccine for multiple subq tumors on torso and extremities, the GP100 vaccine and high dose IL2 for subq tumors and bone met in my right elbow, and the peptide vaccine and high dose IL2 for a bone met in my right ulna. This last bone met in my right ulna was the most stubborn I have ever had. Until this tumor, all my tumors had responded well to the above treatments and surgeries. For some reason, this new tumor had "mutated" to the point of not responding to any treatments. In April, 1998, I underwent surgery to have the 10cmx7cm tumor (about the size of a baseball) removed and to have an implant connecting my ulna to my humerus to replace 5 inches of bone that the tumor had eaten away. At the time of this writing, April, 1999, I have had since the fall of 1997, my sixth bone tumor in my right upper tibia (shin). I have had no treatment or surgery yet, as the tumor seems to be regressing on its own.

During these years, I have completed college, have had two children, and have built a rewarding career. I am no superstar and certainly don't stand out any differently than anyone else in this world. However, I feel that my attitude and positive outlook on life have gotten me this far and will keep me going for much longer. Some physicians say I have a unique immune system that is stronger than the disease most of the time, but that needs a boost every once in a while. Some physicians say it is my attitude. Some others just scratch their heads. I think it is a combination of my attitude, my immune system, my treatments and the great support from my family. I also think I have been lucky to have had great physicians who care about beating this disease, Malcolm Mitchell, Charles Vogel, Charles McBride, Robert Benjamin, Omar Eton, Steven Rosenberg and Martin Malawer, to name a few. With physicians like these and others, melanoma patients are being given the chance to beat the odds at an increasingly greater pace.

As a result of my 24 years of fighting this disease, I would like to pass along one more point. You are your own best advocate for beating this disease. You should not rely solely on one physician or on one institution for your treatment. As difficult as it is to accept, the medical community does not have all the answers. There are numerous programs underway all over the world looking for solutions and each program is different. Your obligation to yourself is to seek out information on as many of these programs as possible and to investigate their results as potential options for your current or future treatment. As an example, when I had the tumor removed last year, I had it shipped to UCSF where it was frozen for future use in an autogolous vaccine. You need to think ahead and plan accordingly. I have nothing but the greatest respect for the physicians and researchers who have provided me with life saving treatments, but even these pioneers have recommended that I search for other treatments as alternatives. The Internet, cancer group discussion lists and many other support and information groups can give you a starting point for your investigation. You need to develop a network of "friends" who have or know someone who has melanoma. You need to be persistent in your quest for what is the right treatment or treatments for you.