Moving from Patient to Victor

Guest blog by Jamie Troil Goldfarb

sur·vi·vor noun: a person who continues to function or prosper in spite of opposition, hardship, or setbacks.

vic·tor noun: a person who has overcome or defeated an adversary; conqueror.

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I am not a religious person, but the best equation I can make to waiting for scan results is sitting in purgatory, waiting for someone to decree if you’ll be going to heaven or hell. It is like that every single time. It’s not a routine medical exam. It’s not a necessary hassle. It is a time when you are waiting to find out if you get to keep living or if you may be one step closer to death. Even if you aren’t in active treatment, even if every previous scan has showed favorable results, each time you wait you are reminded that at any point your life could drastically change.  And that is the reality of “surviving” stage IV melanoma.

The line between patient and survivor is blurred. People choose to think of themselves as one way or the other at extremely varied points during their journeys.  Some people consider themselves survivors from day one, because every day they are alive, they are surviving melanoma. Others wait until they receive clear scans and are free from making treatment decisions.  While others do not make the emotional leap until they receive a definitive “no evidence of disease” diagnosis. How you think of yourself during your journey is very personal and definitions tend to morph along the way, ebbing and flowing with the emotions most prominent on any given day.

Self-definition is a lot of things, but the thing that it’s not is a definitive transition. And I did not realize that when I started. When I was going through treatment, I assumed that at some point, the cancer would be gone and I would forever be a cancer survivor rather than someone living with cancer.  I assumed that there would come a day when my doctor would declare me NED, we would have a huge celebration, and that would be that—a brush of the hands, a flick of the wrist, done.  And while I am thankful every second of every day that the first two of those steps have happened, I am far from done.

You are changed forever by this horrible, terrifying, painful, beautiful, awesome, brilliant journey.

Cancer may leave your body, but it is forever imprinted on your soul. You don’t just go back to normal. You are changed forever by this horrible, terrifying, painful, beautiful, awesome, brilliant journey. You simultaneously fall into a depth of fear you didn’t even know existed and soar to heights of love and hope that you could never have imagined.  For years you endure an ultra-intense, adrenaline-filled, life-or-death existence during which you are screaming with every inch of your being to please please please be allowed to live. And on that glorious day when you find out that your screams have been answered and finally melanoma is more behind you than in front of you, it is time to self-define again.

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The author with her family

In all aspects of life, being a survivor is a commendable attribute. Being able to function and prosper in spite of opposition is something we all strive to attain. But, for me, it is too passive a definition for what happens during cancer. For me, it’s not enough to continue to function.  After all that I have learned, all that I have been given, all I have seen during this journey, I need to keep it with me and allow it to continually shape my existence.

We don’t sit passively by while cancer happens to us, surviving each day by luck. We fight as hard as we possibly can.  We endure levels of physical and emotional pain that most people cannot imagine. We kick, punch, and claw our way out of melanoma’s grasp. We don’t merely survive it, we conquer it. We are victors. And as victors, we wrestle and steal every ounce of love, gratitude, and beauty out of our journeys. We keep it safe and deep within us, and use it to remind ourselves of just how beautiful life is and how lucky we are to be living it.  Because of our victories, we celebrate the mundane, we see joy in the ordinary, and we give thanks for monotonous every-day routines.  While I am exceedingly thankful that cancer does not live in me anymore, I will forever live in cancer.

And I will never be done.

About the Author:

Jamie’s personal mission is to spread information about the importance of oncology clinical trials as far and wide as possible.  To this end, she is involved with MRA and other melanoma focused advocacy groups, Imerman Angels, and CISCRIP. She also serves as a research advocate for NCI, and works one-on-one with patients to help them navigate their treatment options within and outside of NIH.

Jamie was diagnosed stage I in January 2007, during which time a wide excision and a sentinel lymph node biopsy showed that the cancer had not spread. In December 2009, she experienced a recurrence in the deep tissue near her primary tumor, but a PET scan and clear margins indicated the cancer was again contained.  After consulting numerous key opinion leaders, it was determined that the best course of action was to wait and see. In January 2010 (one month later), Jamie became pregnant with her son, Kai. Two weeks before she was supposed to return to work from maternity leave, her oncologist suggested a follow-up PET scan.  The scan revealed tumors in her liver and her pancreas. Her son was 12 weeks old. After quick, furious, and abundant research, Jamie and her husband, Jeff, decided that the best course of action was to join a clinical trial at the National Cancer Institute. That decision saved her life. Jamie enrolled in NCI’s TIL trial. From January through April 2011, while waiting for her new cells to grow as part of the treatment, Jamie received high-dose IL-2 as a stand-alone treatment. The IL-2 shrank the tumors in her liver and pancreas, but August scans showed 35 new subcutaneous tumors throughout her body. In September 2011, Jamie received NCI’s TIL treatment.  The treatment has been working progressively over the past 2+ years and Jamie’s most recent scans, October and February 2014, both showed no evidence of disease. Jamie, Jeff, and Kai recently celebrated Kai’s 3rd birthday, and, because of NCI’s groundbreaking research, they are confident that they will be celebrating together for many years to come. 

Protecting Melanoma Research Progress in the Midst of Budget Upheaval

By: Wendy Selig, MRA’s President & CEO

A diagnosis of metastatic melanoma launches individuals and their families into an intense maze of frightening statistics, clinical trials and uncertain prognosis.  Here at the Melanoma Research Alliance (MRA), we are focused on the mission of accelerating the research to bring better options to these patients.hedgemaze

Metastatic melanoma is a deadly disease that generally arises on the skin.  Its incidence is on the rise, tripling in the last three decades.  For too long, this vicious disease has evaded effective therapies; one person dies in the U.S. of melanoma every hour.

The good news is that there is finally real progress in the research, with melanoma now leading the oncology field in potential and novel therapies.  In the last three years, four new drugs have been approved by the Food and Drug Administration (FDA), and several promising new approaches are in late-stage clinical development.  The field of melanoma treatment is changing rapidly, as the “next set of options” has never looked more hopeful.

Yes there is more hope than ever before that we are nearing the day when no one will suffer or die from melanoma.   But we are certainly not there yet. Today’s patients must navigate a complex and intense juggernaut of therapies, uncertain about whether their specific tumors will respond to the newest tools in their oncologists’ arsenal and how long those responses might last.

Only continued medical research can combat the uncertainty that still surrounds melanoma and many other types of cancer; research to help speed current treatments through the clinical trials pipeline and into the hands of patients, research into biomarkers to help better predict which patients will respond well to a particular treatment and what can be done about resistance to therapy once it sets in, and research into entirely new modes of treatment so that patients will not run out of options before they run out of time.

We must have sustained investment of resources and a commitment of focus from the best and brightest minds to ensure that we can expedite more concepts through the clinical development system and through the regulatory process so patients can benefit from the progress.

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It’s been stormy skies in Washington for medical research funding

The government shutdown and budget upheaval at the National Institutes of Health (NIH) and the FDA illustrates the fragility of our current research ecosystem.  The distressing turbulence in Washington has taken a real toll on the melanoma research and clinical care community just at the moment when there are so many remarkable new paths of discovery to pursue.  The role of all stakeholders in this community has never been more vital to the mission of sustaining and accelerating progress for patients.

The MRA engages all of the stakeholders – from individual patients, clinicians and research institutions, to large pharmaceutical companies and small biotech firms, to other like-minded nonprofits, government officials and our corporate allies as we work to deliver better outcomes for patients with melanoma and all who are at risk.  Since 2007, the MRA has provided more than $49 million to researchers working to better prevent, diagnose, and treat melanoma.  These funds have made a real impact in advancing some of today’s most exciting new treatment approaches – including targeted and immune-based therapies.  But even with this level of funding from MRA, the melanoma research ecosystem depends on a vibrant federal commitment, through the NIH and the FDA.

The effects of continued budget disagreements have held medical research funding hostage.  NIH Director Dr. Francis Collins calculates that the 5.5% NIH budget reduction mandated by sequestration coupled with a decade of flat budgets and rising inflation has cut the agency’s purchasing power by 25%.    Due to the Sequester, NIH is funding 650 fewer research grants this year than it did in 2012.  This reduction is having a tangible impact at research universities across the country.  Faced with this trickle of research funding, promising young scientists are packing up their labs and heading to big corporations instead of pursuing careers in academic research.   The Sequester’s full impact on the medical research pipeline could take years to measure.

The recent government shutdown made matters even worse as NIH furloughed 73% of its staff and halted new clinical trial enrollments, keeping even gravely ill patients waiting for access to cutting-edge experimental therapies.  A metastatic melanoma patient from Michigan was told that the potentially lifesaving treatment he’d been expecting to receive at the National Cancer Institute (NCI) was not available to new patients during the government shutdown.  While his community rallied around him and managed to get him enrolled, others seeking treatments were forced to wait 16 agonizing days for the government and NIH’s intramural clinical trials to reopen. That is an unacceptable delay, especially in a disease like metastatic melanoma, which is characterized by rapid progression through a patient’s body.

Patient organizations recognize that the responsibility for funding translational research to bring new treatments to patients does not fall solely on the NIH, where it has been subject to political disagreements and Congressional impasses.  Other funders of scientific research, like pharmaceutical companies, academic institutions and patient-led groups like MRA, are working together to build impactful research programs.  For example, MRA has engaged in eight Industry-Academic Partnerships, research awards that are supported by matching funds from our organization and biomedical industry companies.  These collaborations have allowed researchers to test promising devices and treatments for application in the fight against melanoma, leveraging MRA’s resources against those of an industry partner to support the high-impact proposal of an academic researcher or team of researchers.

For organizations like MRA, it all comes back to the people we serve – the patients, their families, and everyone at risk.  All of these people depend on the medical research ecosystem to address the challenges they currently face, to change treatment paradigms and transform lives. As we sit on the cusp of tremendous progress in melanoma and so many disease areas, we must not accept delay and gridlock that threatens people’s lives.

Melanoma Research Progress At Stake in Washington Brinksmanship

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By: Wendy Selig, MRA’s President & CEO  

When you live and work in Washington, D.C., it’s easy to forget that most people don’t follow bills as they move through the legislative process or have Senate Sub-Committee homepages bookmarked in their browsers.  Most people are moving forward with their daily lives, despite whatever Congressional posturing or scandal is the Beltway in any given week.

But the brinksmanship in Washington does threaten many important programs, and is already having a palpable impact on melanoma research, threatening to slow the pace at which new treatments are made available to patients.

The National Institutes of Health (NIH) is the country’s largest source of investment in basic medical research, research that leads to discoveries, clinical trials, and ultimately, approved therapies for patients.  With the cuts from sequestration, the NIH saw its fiscal 2013 budget decline by $1.5 billion. Adjusted for inflation, the NIH is currently funded at its lowest level in more than 40 years.

In real terms, NIH Director Francis Collins has said the cuts mean the agency will give out 650 fewer grants to promising scientists and researchers this year.  Researchers currently funded by NIH may find their support drying up, forcing them to scale back their experiments or abandon promising projects altogether.  The thought of the next breakthrough in melanoma treatment left to languish unexplored is devastating to the entire melanoma community.

It’s not just the cuts that have happened – and loom in additional years of sequester implementation without a change in course.  The research ecosystem is also suffering from the uncertainty surrounding the confluence of the debt ceiling and appropriations discussions.  NIH could face additional budget cuts as lawmakers scramble to hammer out last-minute deals to avoid a government shutdown this time around, while setting up future high-stakes negotiations down the road the next time a significant budget deadline is reached.

This uncertainty has not only affected NIH, but has also impacted the Food and Drug Administration (FDA)—the agency responsible for moving treatments through the review and approval process.  Strapped budgets at FDA are already creating real strains on this very important agency, and according to industry publication FierceBiotech, a shutdown could upend the agency’s drug approval timetable, delaying hearings and meetings and, tragically, delaying treatments from reaching patients.

Those of us working in other areas of the research enterprise – academia, industry and the non-profit community – want to work collaboratively with our partners in government to move beyond this cycle of cuts and threatened shutdowns, whose only impact is to generate uncertainty and prevent effective planning to maximize resources.   In medical research, it is critical to be able to see the near, medium and long-term horizons.  The current budget brinksmanship makes that extraordinarily difficult – and threatens to undermine the progress we have been making.

Melanoma News Round-Up, September 15

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An implantable melanoma vaccine begins clinical trials, whales with sunburn, and other melanoma and skin-cancer related news from  the last few weeks.

Cancer vaccine begins Phase I clinical trials via Harvard News

Sleep Apnea May Predict Skin Cancer Risk: Could Sleepless Nights Be Harmful To Healthy Skin? via Medical Daily

Whales can get sunburned too via Smithsonian

Can airport security scanner technology help detect skin cancer? via CBS News

More cuts loom for US science via Nature

“Self-Eating” Cells May Help Prevent Melanoma Progression via Cancer Network

Loss inspires melanoma caregiver to help others via MD Anderson Cancer Center

NIH Director Dr. Francis Collins Explains Why Redheads are at Risk for Melanoma

OLYMPUS DIGITAL CAMERAA new blog entry by National Institutes of Health (NIH) Director Dr. Francis Collins offers a great explanation of recent research findings that are starting to unravel the mystery of why redheads are more susceptible to melanoma.

According to Dr. Collins,  the research was supported by NIH funding.  The NIH’s budget was slashed by sequestration and could face more funding cuts during the 2014 appropriations process.  Unless the U.S. supports a fully-funded NIH, we may, sadly, see fewer and fewer medical research breakthroughs in the future.