Immunotherapy & Awareness: Fighting Melanoma on Two Fronts

MRA is saddened by the news that Mark Carter lost his battle with melanoma this week.  We send our condolences to his family and friends.   He had hoped that sharing his story would educate and raise awareness of this deadly disease.    

I first went to see my doctor in 1999 after my wife’s prompting.  She had noticed a mole on my lower right abdomen that had changed shape and wanted me to get it checked.  My doctor told me it was nothing to be concerned about and sent me home.  The mole continued to grow and again my wife told me to go see the doctor.  I did and this time he agreed to remove it.

A week later, my doctor rang me at work and told me that it was malignant melanoma.  Both my wife and I were totally devastated by this news.

Things were a bit of a blur after this, but I had a wide-level excision and regular check-ups for 10 years after surgery.  Finally, I was discharged from the hospital feeling incredibly relieved that the disease had not recurred.

In April 2012, I woke up one morning with a painful lump under my left armpit and the alarm bells started ringing in my head.  I saw my doctor who said he was 80% sure it was an infected lymph node but could not rule out melanoma due to my past history.  The lump never improved, so it was removed by surgery and I was told that the melanoma had returned.  I was now stage IIIC.

The first CT scan taken within three months of my surgery showed that my disease had not been contained, so I was put on the BRAF inhibitor treatment, vemurafenib.  I was now a stage IV terminal patient.  Three months later, the next scan revealed that I had shown a complete response to this amazing drug.  Unfortunately, 13 months later the disease came back.  Vemurafenib is only a life prolonger, not a cure, and resistance usually occurs.

Finally, I was put on the immunotherapy drug, ipilimumab, and a few weeks ago I finished my last infusion.  My next scan will show if I am a responder or not, but even if I do fail to respond I am lucky enough to have been offered the chance to take the new anti-PD-1 drug, nivolumab, under the expanded access scheme in the UK.

Although I had 13 years clear of the disease, I now count my lucky stars that there are treatments available that have kept me alive for 18 months.  I truly believe there has been a huge paradigm shift in melanoma treatments, particularly in the field of immunotherapy.  In maybe five years’ time, melanoma will no longer be a terminal disease but more of a chronic illness.

I now devote most of my time to raising awareness of the risk factors and causes of melanoma.  Still far too many people are ignorant of the dangers of excessive UV exposure.  I believe that education is the key to increasing awareness and ultimately reducing the recent explosion in melanoma incidence.

 

Mark and Liz Carter edit

About the Author

Mark Carter, 56, lived in the United Kingdom with his lovely wife Liz.  He was a UK-based melanoma awareness advocate and anti-sunbed campaigner who worked to raise awareness of this deadly disease.  You can learn more about Mark’s journey and his advocacy work on his blog: http://www.melanomaman.co.uk/

 

 

Melanoma Awareness From a High Schooler’s Perspective: Where We Are and Where We Need To Be

Not many teenagers know that melanoma is the number one new cancer diagnosed in young adults ages 25-29. It is also difficult to believe that as with many mistakes made at a young age, neglecting sun safety during childhood and adolescence can harm you later in life.

Most of my peers would never dream of lighting a cigarette, yet few would think twice about laying out unprotected at the pool or beach.  Luckily, people are beginning to understand the dangers of indoor tanning, appropriately likening tanning beds to coffins. In previous years, girls would go to tanning beds before school dances. They now settle for a safer (but orange) alternative: spray-tans. Skin cancer awareness has increased, sadly due to the rise in its prevalence, but there is still a ways to go. Most people I know have yet to realize that unprotected sun exposure is just as deadly as a tanning bed.

They're called artificial sun for a reason

They’re called artificial sun for a reason

My paler friends are the most vigilant about sunscreen use. Not one of them wants to get sunburned, so they’re sure to use (and re-apply!) broad-spectrum, high-SPF sunscreen to protect themselves. They do this to escape short-term effects of the sun, but rarely think about the sun’s capability for long-term damage. They are correct in practice, but lack part of the motive for their protective actions. Maybe this is why the occasional girl will still come home from spring break bright red.  They don’t know the danger and how one blistering sunburn in childhood or adolescence doubles their risk for melanoma.

Many of my friends have olive-toned skin, like I do, that tans easily and rarely burns. It is hard for people with this skin type to think twice about going to the beach and getting a dark tan.  Ironically, we are quick to criticize our fair-skinned friends when they get badly sunburned, but the truth is everyone is at risk for melanoma, the most dangerous form of skin cancer.

Tanning is a sign of our body’s response to damage caused by harmful UV rays. Without sunscreen, UV rays from the sun penetrate the skin and damage DNA. Cells called melanocytes can begin to grow uncontrollably because of change in their genetic makeup, and melanoma (skin cancer of melanocytes) develops. Many people do not see skin cancer as a big deal. It is often thought of as a spot that can be removed and forgotten. However, this is not the case with melanoma, which makes up only 4% of skin cancer cases but 80% of skin cancer deaths. Melanoma spreads extremely rapidly and if not caught and treated early on, will spread to the lymph nodes and vital organs. Stage 0 or 1 melanoma has a 90% cure rate, while Stage 4 melanoma patients have a median life expectancy of less than a year. If more people knew these facts, the melanoma death rate could decrease significantly.

What does the future hold for melanoma awareness? Teenagers have already progressed to the point where most of us avoid tanning beds. The next step is to be better at protecting ourselves from the sun, even though it means giving up tanning in favor of sunscreen, healthy skin, and a melanoma-free life. If we can be truly and completely aware of the sun’s hazards, we can motivate ourselves and others to eradicate this aggressive but completely preventable disease.

About the Author

abouttheauthorI’m Isabella Todaro, a rising junior at Georgetown Visitation in Washington, D.C. I have spent this past week as a volunteer at MRA and learned a lot in the process. My cousin has been working here for two years, so I was already interested in the organization before I decided to volunteer. The experience has been great, as I have learned information that otherwise might have remained unfamiliar to me. Like many people, I used to think that getting sunburned, but not getting a tan, puts people at risk for melanoma. Now I know that both of these dangerous behaviors are risky. After learning this and so much more at MRA, I intend to practice sun safety and let others know why they should, too.

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

Melanoma News Round-Up, November 8

Enjoy your weekend and remember to be sun smart!  Here’s the latest melanoma news, plus a great skin IQ infographic, to keep you updated on all things melanoma:

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Infographic via Myriad Genetics

Blood test could detect serious skin cancer spread via BBC News

The Economist honors cancer immunotherapy pioneer James Allison via MD Anderson News

History of Prostate Cancer Tied to Higher Odds for Melanoma via US News

The Pills of Last Resort: How Dying Patients Get Access to Experimental Drugs via the New York Times

5 things I now know about melanoma via Oncology Nurse Advisor

Distraught parents’ anger after doctors failed to spot 33-year-old daughter’s skin cancer two years before she died via the Daily Mail

Misdiagnoses and Sequencing in Melanoma via OncLive

The Simple Thing You Can Do Every Day To Look Young via the Huffington Post

Melanoma News Round-Up August 2, 2013

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Here’s the week in melanoma-related news:

Hospital Staff Hold a Wedding for a Late-Stage Melanoma Patient via The Border Mail

Scientists Seek to Rein In Diagnoses of Cancer via the New York Times

Tattoos can Hide Melanoma, Experts Say via WebMD

Meet the Woman Who Survived Five Melanomas via The Telegraph

New Therapy Improves Lifespan in Melanoma Patients with Brain Metastases via Science Daily

The MRA Policy Pulse

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With our office based in Washington, DC, we have numerous opportunities to contribute to efforts aimed at policy-makers urging them to ensure better outcomes for melanoma patients and those at risk.  Whether we are advocating for increased NIH funding, participating in meetings on Capitol Hill, or highlighting the need for prevention strategies and innovative new treatments, we are always working toward the day when no one suffers or dies from melanoma.

Here are some highlights from our latest policy initiatives:

  • MRA is collaborating with the Department of Health and Human Services, the CDC and other key stakeholders to engage the Surgeon General’s Office in a Melanoma Public Health strategy via a Call to Action. We are lending our expertise to establish a strong rationale for the many steps that need to be undertaken to defeat melanoma.
  • MRA recently became a member of the Public Access to SunScreens (PASS) Coalition, whose mission is to work collaboratively with the FDA, Congress, the White House, health providers, consumer organizations and stakeholders to establish a regulatory pathway for timely pre-market review of new, safe and effective sunscreen ingredients.  PASS has proposed legislation, which includes expedited review of the backlog of PASS Logosunscreen applications and establishes a new process that allows future sunscreen applications to receive a decision within one year of submission.  MRA participates in Hill meetings with the PASS Coalition, urging members of Congress to support this legislation.
  • In May, the FDA released draft regulations that will require tanning beds and sunlamps to display stronger warning labels, including a recommendation that people under the age of 18 abstain from using these devices.  The proposed reclassification moves tanning beds from Class 1 (low risk) to Class 2 (moderate risk) devices.  While this is a great first step, MRA plans to continue working with the FDA and other stakeholders to restrict the use of these dangerous devices.  MRA will submit comments to the FDA in the coming weeks applauding them for their efforts and encouraging the department to institute additional regulations that will completely restrict minors from the use and purchase of indoor tanning devices.Tanning Lamps
  • MRA is working with the Melanoma Research Foundation to request $10 million for a melanoma research program administered by the Department of Defense’s Congressionally Directed Medical Research Program in 2014. With hundreds of thousands of U.S. Army, National Guard, Coast Guard, Air Force and Marine personnel having served in the Middle East over the past decade, where the intensity of sun exposure is great, there is a potential for heightened long-term risk of melanoma incidence and mortality in our military and veteran population.  MRA met with Senators on Capitol Hill to seek support for this funding in the Senate Defense Appropriations bill.

Here at MRA, we continue to advocate for policy changes to accelerate progress in the melanoma field.  We frequently work with senior policymakers at the Department of Health and Human Services, the Food and Drug Administration, and Congress to offer constructive solutions and focus resources and attention on defeating melanoma.

We will keep you updated on any future developments surrounding these issues!