Our Founder
Masuo Ishida & Susan Steel
On January 8, 2008, the world’s largest and best-funded Melanoma Clinic
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 chemotherapy drug 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 on the cusp of death, 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 the acronym "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 could 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 coaxed me into training in the boat
too, so that we could race the local high school girls' 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 the chemo Temodar, 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 sixed that belief.
After wrangling with my fears for two days, I sat down and researched
every clinical trial. A company called Biovex had
a new biologic that made it to Phase III. The trial had a 25-30% overall response
rate, with minimal side effects. Furthermore, the Oncovex trial’s
Principal 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 England. 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 2nd. 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 saw a treatment plan with
options and believed I could live long enough to be on the
receiving end of more effective treatments. For the first time
since the onset of this disease, I might be offered better response
rates than 6% or 11%. My tumors went through an initial genotyping so that
future treatments might be selected based on my own mutations. Ultimately, my tumors would be too many and too large to meet the Oncovex eligibility requirements. Even so, top
researchers at that time believed that we were two-and-a-half years away from treatment
combinations that would start offering cures.
Was I out of the woods? Hell no. On December 15, 2009 I had a crown screwed
into my head. Dr. Ross Abrams, Director of Rush’s Radiation Oncology,
used stereotactic radio surgery to eliminate two melanoma lesions in my brain. The
noggin had to remain cancer free for two months before I could qualify for
any clinical trials. On January 11, 2010, I became Rush’s first
Interleukan-2 (IL-2) melanoma 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 8th
I had a return engagement with IL-2 at Rush, only to find the tumors continued to grow in my liver and spleen but my brain was cancer free. On March 22nd I began four cycles of a chemo cocktail with a Braf inhibitor chaser. Unfortunately by August 2010 I had another brain met requiring my second SRS Brain Surgery.
One week later I took our son, Chris, out to Claremont California to begin his college career. My husband, Masuo, waited at home for our daughter, Sachi, to return from a community service program in Fiji. Then between September 2010 and November 2010 I began an expanded access trial for Ipilimumab, an immunotherapy that targets CTLA-4 monoclonal antibodies. (In March 2011, Ipi, branded as Yervoy, became the first FDA-approved therapy for metastatic melanoma in more than a decade.) I moved to Oncology Specialists under the care of Dr. Sigrun Hallmeyer since that was the only Chicago institution with an open Ipi trial at the time. Unfortunately a week before Thanksgiving an MRI showed two brain mets yet again, thereby making me ineligible to continue on the Ipi maintenance protocol. Perhaps the third time will be the charm for me and brain mets. I had that halo screwed into my head two days before our son came home for the first time from college for Thanksgiving. A CT also showed that melanoma was quickly increasing again in my liver, spleen and lungs. Defiantly, I made Thanksgiving Dinner for my family. The next day I experienced severe gastrointestinal cramping that put me in the ER. It was actually a delayed response to the Ipi treatment that I had completed a month prior. Now we know that Ipi side effects can occur long past treatment completion.
At that point I looked Dr. Hallmeyer in the eye and asked her what drug she would seek if she were me. She responded that since my tumor had tested positive for a Braf mutation called V600e, the optimum choice would be a Braf inhibitor called PLX-4032, otherwise known as RG 7204, otherwise known as Vemurafinib or "Vemu". However, no trial was open for that treatment. That is when, with the help of another patient advocate, I turned to Vemu's distributor, Genentech, and found out that an expanded access trial would open at the beginning of December 2010 at only three sites. By December 6th I stood in front of the very tall, Dr. Omid Hamid of The Angeles Clinic in Los Angeles. Yet again I was forced to travel to treatment because Chicago could not offer the most promising treatment. After fulfilling all the eligibility requirements, I went home to Chicago wait for Vemu to arrive at The Angeles Clinic.
Now here is where we separate the women from the girls, so to speak. Our son, Chris, came home after his first semester of college for his winter break on December 18th. I was still waiting for Vemu. On Dec 28th Chris began hemmoraging from his nose. He was ambulanced to the hospital where labs showed his platelet count to be 2,000 (150,000 is the low range of normal). Chris was then misdiagnosed with and treated for idiopathic thrombocytopenic purpura or ITP. This is a bleeding disorder in which the immune system destroys platelets. Bone marrow biopsy results on January 5th, however, correctly determined that Chris had Very Severe Aplastic Anemia. It seems that he did in fact have a bleeding disorder, only it wasn't a platelet destruction issue. Instead Chris' bone marrow had for unexplainable reasons stopped producing platelets. Soon his marrow would have difficulty producing red blood cells too. Overnight it seemed, Chris' survival became transfusion dependent. We immediately tested his sister for a marrow match. We also recruited a select, small group of dedicated platelet and blood donors so as to minimize the development of antigens in Chris' blood which would make a future marrow graft more difficult. Then on the evening of January 5, 2011, I made one of the hardest decisions of my life. I left Chris' side and got on a plane to Los Angeles because the Braf inhibitor was now available at The Angeles Clinic. This act is analogous to the parent who grabs his/her own oxygen mask before masking the child on a crashing airplane . By the evening of January 6, 2011 I was back in Chris' Chicago hospital room. Later I learned that I was the first person in the U.S. to be admitted to Vemu's expanded access trial. Where there's a will there's a way ... even amidst chaos.
On January 11th, Chris took a medical leave of absence from Pitzer College. Then on February 3, 2011, Chris' wonderful college roomate and I boxed up his belongings and shipped them home. The pain I experienced that day makes IL-2 feel like a day at the spa. I wish this experience on no family.
Within 7 days of starting the targeted therapy that inhibits Braf, my subcutaneous lesions visibly shrank. It might have even been sooner but I was living at our son's hospital and quite distracted. By Day 10 I broke out into a high temp and prickly red full-body rash. I had to cease Vemu and receive IV fluids, antibiotics and tylenol for four days as an out-patient. Luckily, Chris was not in the hospital that week nor needing to go to the ER at 2am. As soon as the rash and fever ceased, I started Vemu at 3/4 the original dose. The rash returned and I stopped taking the drug until things were under control again. I resumed Vemu at 1/2 the original dose, which seems to be the right fit for a 5'4" female like me. CTs and MRIs were taken every other month, with each one showing decreasing tumor mass. In my sixth cycle/month of the drug, my CTs showed an estimated 75% decrease in overall tumor mass with no recurrence of brain mets. Every 28 days I flew out to LA for lab tests and the next cycle's drugs. In May, I presented my case to members of the Oncology Division as well as the Braf team at Genentech. Say what you will about Healthcare in this country, pharma's profits, and side effects (of which I have experienced 12 since starting Vemu), but if it weren't for the people who got this drug into my hands, I doubt I could have taken care of our son through the onset of his own life threatening orphan disease.
In August 2011, the FDA approved PLX 4032/RG7204/Vemurafanib for use with metastatic melanoma. Roche/Genetech renamed the drug Zelboraf. As of October 2011, I continue to be a Zelboraf outlier in my tenth month. Mean durability for this drug in trial was 5.6 months. Side effects are tolerable but increasing, with the most challenging being uvietus, temporary but intense lymphocytic infiltrates, a total body rash, intense joint pain and neuropathy.
Chris in the meantime beat the odds for Very Severe Aplastic Anemia in terms of responding early to an intensive anti-thymocyte globulin (ATG) plus cyclosporine course of treatment. This is the first line of treatment when there is no sibling marrow match. This disease hits 3 in one million Caucasians and 15 in one million Asians. Chris is bi-racial and therefore has low odds of finding a marrow match. While he responded well to ATG, melanoma has taught me one thing. Always, always, always, know your options and keep them accessible. Chris returned to his studies at Pitzer College in the fall of 2011.
Who would have thought back in 2005 when I was told I had a 15% chance of surviving five years that I would be here six plus years out. I have survived long enough to benefit from the incredible advances in melanoma treatment begun in 2009. My guess is that melanoma will find a new pathway around the Braf inhibitor, requiring me to find the next treatment. My doctors have immunotherapy and targeted options for me, while we wait for new drug combinations to become
available. It is all part of my formula to control melanoma while we pursue 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 and perhaps further. I know
that I have been paired with doctors who share 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 melanoma research could be fast tracked through a national network of fresh frozen primary melanoma tissue repositories, as well as collaborative research on new or competing lines of research that defy prior obstacles which favor securing research budgets over advancing science. After all, some top researchers claim that finding cures for half
the melanomas is possible in five years. I know that if I am persistent enough we could develop the means of affecting long-term behavioral changes in the way people and institutions respond to the challenges of melanoma. I know that on March 12, 2010 seven brave Directors and myself started Skin of Steel to provoke change in how we approach Melanoma Awareness and Research I know that on October 3, 2011 I became a Stage IV Melanoma patient that survived six-and-a-half years.
I know that I could help make sure you never walk in my shoes.
Pls share my story with others via Facebook:
**Disclaimer:
Skin of Steel is devoted to educational purposes only and is not
intended to replace or substitute professional medical care.
Information provided by SOS should not be used for diagnosing or
treating a skin problem or disease. If you have or suspect you have a
skin problem please consult with a dermatologist, or other qualified
professional healthcare provider.