Susan's Back Story: My 5 year Sword Play with Melanoma

It has been suggested to me that because this blog is growing so quickly (close to 500 visits in the first month), that not everyone knows how I morphed into this "Medical Tigress".  So for those of you interested in the gory details, here is my back story.

On January 8, 2008, the world’s largest and best-funded Melanoma Center released me.  After almost three years of treatment at the National Cancer Institute in Bethesda, Maryland, including three clinical trials, 40 platelet units and 60 blood units, hundreds of thousands of tax dollars, and the collective intelligence of some of the best and the brightest, Melanoma was defiantly consuming my liver and spleen.   A chemo called Temodar was prescribed.  This can be the kiss of death for Melanoma patients.   It is given when all hopes of survival are relinquished.  Temodar is only effective in 10% of Melanoma patients.  I was given 6 to 12 months to live.

As a mother given 6 to 12 months, I quickly set real clear goals.  I taught my sophomore son how to investigate colleges and interview the good profs…a year before any of his peers even had to say ACT.  I volunteered with my eighth grade daughter, at the Therapeutic Riding Organization of Tucson so she could learn the joy of marrying her love of horses with service.  I swallowed my pride as a “real” world traveler and booked that dream cruise my husband wanted even though it was the antithesis of global sensitivity.  I drilled into my small business staff that they were trusted, capable of taking initiative, and must help the company grow if I could not. Then I convinced an Olympic medalist to coach my patient advocate team to row crew for an 8 women boat, so they could get a much-needed mental break.  Nausea was defied when my advocate team convinced me to start training in the boat too, so that we could race the local high school girl’s crew team.  It was also critical to educate the public about the value and impact of platelet donations.  And just because I was still standing, I agreed to teach middle school kids how to take the lead in a village fundraiser by owning their message and staying on task.  Nope I wasn’t manically trying to fit the rest of my life into one year, no not me.

While frantically reaching for goals, I was still left with the reality of having to breathe and lead a normal life as the six and then twelve-month deadlines past.  I argued with myself in the shower about whether Obama was really the only one who had the audacity of hope.   Occasionally, I submitted myself to new clinical trial eligibility assessments only to be humiliated.  Sheepishly and with great frustration, one day I admitted to my advocate team that I was tiring mentally and physically.

On October 28, 2009, after twenty-two and a half months of chemo, lab tests indicated that the monster was running loose again.  Subsequent scans showed that not only was I out of remission but that Melanoma had the audacity to hit my brain.   There was only one problem.  It was clear to my local oncologist, palliative care doctor, advocate team, friends, family and even my mother, that I was still strong enough to fight, which meant that it was time to defrost hope…not an easy thing to do after some of the top research docs in the world had basically deep freezed that belief.

After wrangling with my fears for two days, I sat down and researched every clinical trial.  Only one stood out.  A company called Biovex had a new biologic that made it to Phase III.  The trial had a 30% response rate, with minimal side effects.  Furthermore, the Oconovex trial’s Head Researcher was Dr. Howard Kaufman, Rush’s Director of Cancer Programs, right here in Chicago.  I called Rush but no one knew Dr. Kaufman, nor was he showing up on Rush’s website.  Frustrated, I picked up the phone and called the CEO of Biovex in London.  Within one hour his Chief Medical Officer, based in Woburn MA, called me and explained that Dr. Kaufman was still directing Columbia University’s Melanoma Clinic and would be moving to Rush December 2^nd.  He called Dr. Kaufman that day on my behalf.  On December 9, 2009, I was the first Melanoma patient Dr. Kaufman met at Rush.

I did not select Dr. Kaufman just because he was willing to see me.  In fact the day before meeting him, my advocacy team and I interviewed another Melanoma specialist at one of Chicago’s premier research hospitals.  I chose Dr. Kaufman because he sees a treatment plan with many options and believes he can keep me alive long enough to be on the receiving end of far more effective treatments.  For the first time since the onset of this disease, I am being offered better response rates than 6% or 11%.  My tumors are finally being genotyped so that treatments can be customized based on my own mutations.   Top researchers now believe that we are three years away from treatment combinations that will start offering cures.

Am I out of the woods?  Hell no.  On December 15, I had a crown screwed into my head.  Dr. Ross Abrams, Director of Rush’s Radiation Oncology, used radio surgery to eliminate two Melanoma lesions in my brain.  The noggin must remain cancer free for two months before I can qualify for any clinical trials.  On January 11, I became Rush’s first Interleukan-2 (IL-2) patient in six years.  The week was rough with the typical side effects of IL-2 including very low blood pressure, vomiting, extreme rash and hallucinations. On February 8^th I will have a return engagement with IL-2 at Rush, and if my body allows, I will have more rounds while we wait for new drugs to come available.  It is all part of the formula for a cure.

Am I glad to be alive?  Hell yes.  I know that folks are facing terribly daunting challenges, especially now, and that my physical discomfort has been manageable.  I know that for whatever reason, I am still alive with a brain that works.  I know I am blessed with the opportunity to change how patients face Melanoma in Chicago.  I know that I have been paired with a doctor who shares my belief in the need for a new research paradigm. I know I am blessed to be associated with a group of advocates, family, friends and business associates that share the same vision.  I know that if I am brave enough a Melanoma Research Center could be developed at Rush that is at the forefront of finding cures for half the Melanomas in five years.  I know that I could help make sure you never walk in my shoes.