Melanoma News Round-Up, March 28

Take a look at this week’s melanoma news, which features new hope for patients through incredible research advances and compelling progress toward reducing the risk of melanoma through new sunscreens and stronger regulations on indoor tanning. 

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FDA review of new sunscreen ingredients has languished for years, frustrating advocates via Washington Post

Sunscreen delay: Stronger products need OK from FDA via FIOS1 News

New Hope for Melanoma Patients via ABC News

Drug Firms Focus on Advanced Melanoma via Wall Street Journal

Boy With Melanoma Raises Thousands Making Bracelets To Battle Cancer via CBS News

Clinicians emphasize risk of skin cancer in patients with skin of color via Dermatology Times

The Burning Truth campaign via the CDC

Melanoma survivor talks about bill that would ban teens from using tanning beds via WPXI

Inslee signs bill banning tanning beds for youth via King 5

Innovation Coming to America

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Though many people may not have realized it until reading today’s front page Washington Post article, sunscreen products sold in the US are not reflective of the latest innovations and science in understanding how best to protect people against harmful UV rays from the sun.  But it is true – the last time a new sunscreen product was approved for use in the US was in the 1990’s, not because scientists and companies haven’t been innovating, but because applications for approval of new products have been collecting dust on the shelf at the Food and Drug Administration (FDA).

Hopefully, things are about to change for the better.  Last Thursday, a bipartisan, bicameral group of Members of Congress introduced the Sunscreen Innovation Act to jumpstart the sunscreen ingredient review process at the FDA so the American public can have access to the most innovative, effective sunscreen products.  If the bill moves forward and becomes law, Americans may finally be able to purchase sunscreen products which have been on store shelves for years in Europe, Asia, Central and South America.

For the past two decades, the FDA process for reviewing new sunscreen ingredients has stalled due to needlessly complex regulations.  The resulting backlog has ground the review process to a halt.

Shockingly, the most recent sunscreen ingredient to receive FDA approval dates back to the age of the dial-up modem.

The Melanoma Research Alliance (MRA) is committed to reducing the toll of melanoma, the deadliest of all skin cancers.  We routinely urge people to know their risks and take steps to reduce those risks, including avoiding exposure to UV radiation and the damage it causes to the skin.  We have worked to improve the safety and efficacy review of new sunscreen innovations that offer essential protection from hazardous ultraviolet (UV) rays.  As a leading member of the Public Access to Sunscreens (PASS) Coalition, MRA has engaged with Congress and the FDA to address the current standstill in a process that is clearly broken.

The need for the most advanced and effective sunscreen products is clear, especially during a time when the deadliest skin cancer, melanoma, is increasing in prevalence.  Each year more than 9,800 Americans die of melanoma – that’s one person every hour.  Skin cancer is the most common form of cancer in the United States with more than 2 million Americans diagnosed every year.  Exposure to UV rays is a leading cause of melanoma and other skin cancers.

Protecting your skin from harmful UV rays offers incredible benefits, preventing sunburns, skin aging, and reducing your risk of skin cancer.  Experts recommend you protect your skin with the regular usage of sunscreen that is:

1) Broad Spectrum

2) Water Resistant

3) SPF 30 or higher

You can dramatically reduce your risk of skin cancer with the proper use of sunscreen, and hopefully you’ll soon be able to purchase the most cutting-edge sunscreen technologies as Congress, the FDA, the PASS Coalition, and MRA work to enact this bill into law.  Be sure to follow MRA for updates as we track this bill’s progress.

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. 

Melanoma News Round-Up, February 7

Here’s your dose of recent melanoma news, featuring exciting research advances, survivor stories, and a bracing look into the dangers of tanning beds.

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Researchers Express Need for a Complete Catalog of Cancer Genes via NY Times

David Cameron’s Sister-In-Law Saved from Skin Cancer by Vigilant Mother via Daily Mail

Bob Marley Would Have Celebrated His 69th Birthday This Week via SKNVibes

Tanning Beds Criticized as Skin Cancer Rates Rise via FH Cancer Research Center

In Vivo Discovery of Immunotherapy Targets in Tumor Microenvironment via Nature

Merck & Amgen Begin Collaboration on Advanced Melanoma Research via The Pharma Letter

Skin Cancer Victim Develops Huge Face Tumor from Excessive Tanning via Express

Amanda’s Story

Twenty four year-old Amanda Greene noticed a new mole that kept changing. A nagging feeling that “something wasn’t right” helped her catch melanoma early.

Amanda GreeneI was 24 when I first noticed a “mark” on my breast. Living a busy life focused mainly on my career, I didn’t even think twice about my health. I felt fine. I didn’t even call it a mole at first because it was just a dot and it had just recently appeared. It was a small dark dot. Almost like the tip of a black Sharpie marker.

A few months later, I noticed it again. It was a larger dark dot that now had a brownish rim around it. The dark center had a faded brown rim with uneven edges that almost looked smeared. At this point, it was the size of a pencil eraser. I wasn’t nervous about it, just casually noticed it and showed a friend. I didn’t want to overreact about it, but at the same time, I knew that “dot” that turned into a growing, darker mole, had not been there before.

That gut feeling is what ended up saving my life…

Read the rest of Amanda’s story on our website.

The First FDA Approval of Two Melanoma Therapies in Combination

By: Louise M. Perkins, PhD, MRA’s Chief Science Officer 

You may have heard this from other sources already, but we want to take a minute and explain why we’re so excited at MRA by some recent news.

This week, GlaxoSmithKline announced that it had received approval from the U.S. Food and Drug Administration (FDA) of a combination treatment for melanoma.  The agency approved the combination of two genetically-targeted drugs, dabrafenib (Tafinlar™) and trametinib (Mekinist™), for patients with metastatic or unresectable melanoma whose tumors possess either the BRAF V600E or V600K genetic mutations.

Why is this so important?  Well, the excitement is on two fronts.

On the one hand, the excitement is high because this was an accelerated approval, a type of approval which allows the FDA tApproved Image for FBo expeditiously approve treatments for serious conditions that fill an unmet medical need.  This is good news for patients because it means the treatment is available to patients sooner than if it was felt to be important to wait for the final, definitive clinical trial to be completed and analyzed.

Secondly, it’s exciting because combinations of treatments are like a one-two punch, attacking the cancer from two different angles and hopefully stalling—or stopping—tumor resistance and improving patient outcomes. These treatments were approved as single agents back in the summer of 2013, and having the data that shows how and why to combine them is important for doctors and patients.

MRA and the melanoma patient community have voiced the need for more treatment options for this disease, and this approval shows that companies and the FDA are responding to this urgency.

MRA has played a critical role in funding combination approaches to fight melanoma.  We have dedicated nearly $12 million to research into this area and anticipate that this figure will increase in March, after we announce our 2014 grant awards.

We’re glad to start off 2014 with a bang, and we hope this approval is only a foretaste of the exciting melanoma developments yet to come this year!

The Most-Shared Melanoma Stories of 2013

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A melanoma tumor as seen with photoacoustic microscopy, Lihong Wang, Washington University in St. Louis

There was plenty of exciting melanoma news in 2013, from scientific breakthroughs to new treatments to effective melanoma awareness initiatives.  In case you missed some of the buzz, here’s a list of the stories that were shared and liked the most by MRA’s Facebook followers during the year.

Image of the Day: Colorful cancer   (More on this research)

Getting to Root of Redheads’ Higher Melanoma Risk

Giada De Laurentiis Pays Tribute to Late Brother with New PSA

Skin Cancer on the Rise in Young Women

Hugh Jackman’s Skin Cancer Scare: 14 other celebrities who have battled the disease

Skin Cancer Images Help People Check Skin More Often and Effectively

Fargo Woman Describes Life-Changing Experience with Melanoma

Blood Test Could Detect Serious Skin Cancer Spread

What is the Best Way to Prevent and Detect Melanoma?

Texas Just Says No to Indoor Tanning for Teens