Skin Diaries

Fighting Fires and Melanoma

I’m a firefighter. Someone once lovingly called us a group of “macho bastards”. We’re tough, self-sacrificing, and stubborn. The day my future disappeared, my macho demeanor suddenly changed to extremely vulnerable and fearful.

I was an active, healthy man and a fireman for Pete’s sake. It wasn’t until I became a father that my perception of the need for sun protection changed. Our family photographer, Tracy Callahan, launched the Polka Dot Mama Melanoma Foundation after being diagnosed with skin cancer. I recognized her efforts to raise awareness about the importance or early detection and prevention. She encouraged me to make an appointment with a dermatologist. I went out of support more than anything.

On May 20th, in a quick 15-minute appointment I had one mole on my back biopsied and was sent on my way as the doctor assured me that everything should be fine. Four days later a nurse called and things began to change quickly. The biopsy was malignant, and my doctor was scheduling an appointment at the University of North Carolina.

“Firefighters are diagnosed with melanoma at younger ages—an average of 42 compared with 64 for the U.S. population.”
– The Skin Cancer Foundation

While I was still recovering from this news, the phone range again. It was the oncology department advising me to come in as soon as possible. I was going to an oncologist. A doctor who treats cancer. As I sat in my appointment the next day listening to the doctor use words like “excision”, “margins”, “sentinel lymph nodes”, “out of work for weeks”, and last but not least “cancer”, the realization and shock that I was in trouble really started to sink in.

After spending the Memorial Day holiday with my family and five-year-old son, I went in for surgery on June 7, 2016 to have the cancer removed. It all happened in the course of a morning and I was sent home heavily bandaged with a drain tube in my side, an abdominal binder wrapped around me, and NO idea what was next.

All I could do was try to rest and recover while I waited for the doctor to call and let me know if they got all the cancer. For days I just prayed and between prayers, I would cry over the life I could lose and what my family’s future would look like without me. Yes, when faced with your own mortality, career firefighters cry. When I finally got word that I was in the clear I wanted to scream from the rooftops! I immediately shared the news with my friends, family and coworkers, all of whom had been so encouraging and supportive.

I owed my life to Tracy Callahan and Polka Dot Mama. She got me to get checked. She saved this stubborn fireman’s life. Literally. What shocked me was that she was the only source of the information I needed to survive. Tracy was the only one that made me aware of the dangers of skin cancer. I wanted to make sure my friends and family were safe. I wanted to protect my firefighting brothers and sisters from skin cancer.

“Men are more likely to die of melanoma than women. This is true at any age.”
– American Academy of Dermatology

Cancer is not a new word around the firehouse, we are exposed to some of the most toxic carcinogens known to man. Firefighters experience cancer-related deaths at a 14 percent higher rate than the U.S. general public. We often focus on our lungs, or prostate, but our largest organ is our skin, and it absorbs everything. As fellow firefighter Mark Rine discovered when he was diagnosed with terminal stage 4 melanoma, occupational cancer is real.

Organizations like the Firefighter Cancer Support Network are working to remind firefighters of the importance of taking steps to protect themselves on and off the job. I’m doing my best to help spread the word wherever I can. I now bear the scars to show what not being sun safe can do to your body. I’m certain that the people around me, especially my colleagues, are sick of hearing me get on them about being sun safe and wearing protective clothing AND sunscreen. But you know what? If I save just one life, just one, it will have been completely worth it.

Story originally shared by Polka Dot Mama on June 23, 2016.

No Comments
Live Wisely What's Hot

2018 Coolibar Guide to Showing Someone You Care

“One in five Americans will develop skin cancer in the course of a lifetime.”
Skin Cancer Foundation

The need for sun protection is universal. Whether you live in a hot or cold climate or have fair or dark skin, we all need to be mindful of our exposure to UV rays. Coolibar recommends gifting UPF 50+ protection to the people you love most as a way to help them live a sun-safe lifestyle while enjoying the outdoor adventures they love most.

For tiny cuties who already love the water:

“Because babies have thinner skin, sunscreen is not recommended for infants under 6 months of age.”
Skin Cancer Foundation

For the “big kiddos” you love to the sun and back:

“Even one blistering sunburn during childhood or adolescence can nearly double a person’s chance of developing melanoma.”
Skin Cancer Foundation

For the sun protection-resistant men in your life:

“By age 50 men are more likely than women to develop melanoma. This number jumps by age 65 making men two times more likely as women of the same age to get melanoma.”
American Academy of Dermatology

For global-trotting sun seekers:

Travel destinations like Hawaii are starting to ban sunscreens containing chemicals harmful to coral reefs.

For adventures in and on the water:

“Many surfaces reflect UV radiation and add to the overall UV levels you experience. Water reflects 10%; sea foam reflects 25% and sand reflects 15% UV rays.”
– World Health Organization

For the garden party goddess that craves a touch of glamour:

“About 90% of visible skin changes such as aging, wrinkles, brown spots or leathery skin are caused by the sun’s ultraviolet rays and can be minimized by sun protective clothing.”
Skin Cancer Foundation

For someone who needs a little extra support:

“Melanoma is not just a skin cancer. It can develop anywhere on the body – eyes, scalp, nails, feet, mouth, etc.”
Melanoma Research Foundation

For EVERYONE spending time in the sun

“For every inch of brim you wear, you reduce your lifetime risk of skin cancer by 10%. So a 6” brim means 60% risk reduction.”
– Skin Cancer Foundation

 

2018 Holiday Gift Guide

 

 

No Comments
Experts Say

Did You Know: More Men are Diagnosed with and Die from Skin Cancer than Women

Dr. Arthur Ide is the owner of Dermatology, P.A. in Minneapolis, Minn. He is board certified by the American Board of Dermatology and is an Adjunct Associate Professor of Dermatology at the University of Minnesota. He currently has four children and lives in Minneapolis.

 

More men than women are diagnosed with AND die from skin cancer. As dermatologists, we ask ourselves why. Is this a societal issue or does it have to do with biology? What is going on here? It’s a little bit of everything, to be honest. Men are the underdogs when it comes to health and wellness.

Our best approach is to look at five key issues behind this statistic and find solutions.

 

1: Men contract skin cancer differently than women

In general, men and women have different relationships with the sun. Many women seek out UV rays in an aesthetic way. Roughly 8,000,000 women tan indoors when they’re younger compared to 2,000,000 men. Men are more likely to contract skin cancer following a lifetime of sun exposure while engaging in outdoor activities like swimming, fishing or golfing.

SOLUTION: Teach men young and old to care for their skin. If your internal response to that suggestion was “yeah, but how,” I get it. Teaching men to adopt healthy skin habits can be tough. We almost always recommend skin protective clothing instead of sunscreens or lotions. Arm them with the tools that will protect them even if they forget to protect themselves.

2: Men are diagnosed much later in life than women

In part because of the difference in sun habits between men and women, skin cancer diagnoses are more common for women under the age of 49, and for men over the age of 49. Because skin cancer manifests itself at a younger age in women, they will often catch it before it spreads beyond one or two basal cells. Men who are diagnosed later in life will often have accrued multiple basal cells.

SOLUTION: Don’t let men wait! Getting your skin checked by a dermatologist should become part of everyone’s routine. Parents need to teach young people to care for their bodies inside and out. Adolescents learning to check their skin today stand a much better chance of detecting skin cancer when it counts.

3: When women see something, they say something. Men, not so much

Generally, women are champions when it comes to early detection. When they notice a change in their body, they take care of it. Often when a man comes to see me they’ve been ignoring the warning signs so long they’re a bit of a train wreck. We’ll find multiple cancers. The famous line we get from men is, “It didn’t bother me”, which is often followed by, “my wife made me come”. Well sure. Skin cancer doesn’t bother you until it’s killing you. This is a key reason why men’s mortality rates are higher than women.

SOLUTION: We need more watchdogs and evangelists. One of the troubles with detecting skin cancer in men is that it’s more common on their backs. Everyone needs to enlist the help of family doctors, partners and family to detect abnormalities in men.

4: Changing habits is easier for some (women) than it is for others (men)

When a woman comes to our office and discovers she’s at risk or has basal cells, she’ll act. Men are more resistant to change. I had one patient who discovered he had four basal cells on his back on his first visit. Despite this, I still can’t get him to wear even a standard cotton shirt outside 100% of the time.

SOLUTION: I’ve found that with men it’s helpful to show, not tell them what they need. Seeing is believing. The easiest solution is to arm them with clothing that will protect them even when they forget to. Our biggest hurdle with men AND women is to shift their dependence on sunscreen to sun protective clothing. What a lot of people don’t understand is that they need a protective shield that never fades or wears away. At the very minimum, we do our best to get women to cover their head, neck and shoulders and to get men to ALWAYS have a hat on while outdoors. The upper extremities are beacons for sunlight. Sunscreen alone will NOT protect them from harmful UV rays. They must cover up.

5: Educational information isn’t reaching men and women equally  

Information about skin cancer prevention and detection often falls under the heading of “beauty” or “wellness”. These aren’t categories frequently sought out by men. If I could get a sports reporter to highlight sun protection use in the stands at every game, we’d be in much better shape.  We need to get better at spreading the message to everyone that needs it.

SOLUTION: Support organizations like the Melanoma Research Foundation and The Skin Cancer Foundation. Their key purpose is to educate EVERYONE about the importance of skin cancer prevention and detection. Even smaller, local organizations make a big difference in terms of educating men and women about the threat of skin cancer and how to prevent it.

You can start by giving to one of these organizations for #GivingTuesday:

Support Awareness and Education:

Skin Cancer Foundation

Melanoma Action Coalition

 

Support Research:

Melanoma Research Alliance

Vitiligo Research Foundation

 

Support Awareness, Education and Research:

American Academy of Dermatology Association

American Cancer Society

Lupus Foundation of America

Melanoma Research Foundation

Polka Dot Mama Melanoma Foundation

 

Support Youth:

American Academy of Pediatrics

Children’s Melanoma Prevention Foundation

Richard David Kann Foundation

 

External Sources:

American Academy of Dermatology Association “Melanoma Strikes Men Harder”

The Skin Cancer Foundation (August 2, 2016) “Men Fall Short in Skin Cancer Knowledge and Prevention”

The Skin Cancer Foundation (May 30, 2018) “Men on the Hook”

HealthDay News (November 5, 2018) “World Melanoma Deaths Up Among Men, But Not Women”

No Comments
Skin Diaries

Vitiligo Patient Loses 100% of Her Skin’s Pigment

It was the perfect day to get married. The sun was bright, the weather was warm, and the beautiful valley stretched out around the field where the ceremony was taking place. Love was in the air and each moment of the ceremony was heartfelt and touching. Unfortunately, I missed most it. I was huddled under an oversized umbrella in the back row, trying not to burn in the sun as the couple said their “I do’s” – because skin without pigment can quickly turn pink.

I was seven years old when I was diagnosed with vitiligo. The little white spots on my spine seemed innocent enough, but the doctor had a different story. My mother was familiar with the disease – her mother, my grandmother, lived with vitiligo for most of her life. Still, she was devastated to hear the news, and worried about what this might mean for me.

Vitiligo is an autoimmune disease that causes loss of pigment, resulting in white spots on the skin and occasionally, loss of pigment in the hair too. About 1% of the world’s population (50 million people) has vitiligo and the condition affects all races and both sexes equally. Since the cause of vitiligo is unknown, there is no cure and treatments are often unpredictable and can vary in results.

It turns out, my vitiligo was aggressive. Although it started on my spine and knees, the spots quickly spread to the point that treatments were ineffective. We just couldn’t keep up with it, and I chose early on not to pursue treatment any further.

Growing up, it wasn’t unusual for me to have three colors of skin – tan, white and pink for my normal skin, my vitiligo and my burned vitiligo. In fact, this tri-color look earned me the nickname of Neapolitan in college. Staying sun-safe wasn’t necessarily hard – I just tended to forget.

Today, twenty years after my diagnosis, I’ve lost 100% of my skin’s pigment to vitiligo. With no color left in my skin, my complexion rivals that of Snow White’s – under my tanner, which I wear daily. As a result, protection from the sun is a requirement at this point in my life. Being exposed in the sun is just uncomfortable – in other words, I can’t forget.

Rachael Laurin Photography

Avoiding the sun is just another aspect of life I’ve learned to live with. I’m the girl who can’t go to the beach without an umbrella, and often a rash guard too. I’m the friend who makes the waiter switch our patio table to one with shade. I schedule my days around the sun’s rays and try to go outdoors in the early mornings or evenings after the sun begins to fade. I always ask about the shade situation for any outdoor activities – and excuse myself when appropriate.

Of course, I still get burned from time to time, despite my best efforts. That’s why I’m thankful for companies like Coolibar that not only provide education on sun safety but create real solutions to enjoying the sun without risking sunburn.

 

You can learn more about vitiligo and my journey at livingdappled.com, a lifestyle blog for girls and women with vitiligo.

1 Comment
Together We Will

Together We Will… Educate to Self-Advocate

Sara Gorman was healthy. She visited her doctor once a year for an annual check-up. She had a career she loved in television and had just married the love of her life. Then, six weeks later she was diagnosed with systemic lupus at the age of 26. Overnight her very new husband changed from being her partner to her caretaker. For the first few years, Sara dealt with her illness by fighting it. She held onto her career and did everything she could to maintain life as she knew it. As a result, she developed further heart and lung complications, kidney problems, and lost her hair a number of times.

“Lupus infiltrated my life so unexpectedly that I had no idea what to do. When you’re healthy, the concept of a chronic illness is completely foreign. It took me two to three years to wrap my head around the fact that this wasn’t going to go away with a Z-Pack. I was going to have to embrace it and start accommodating for it.”

With her diagnosis, she was given a number of reading materials and advice to prepare her for what to expect. Mainly depression, fear, anxiety, exhaustion…the list goes on. But Sara was still young. She wanted to get out, be active, but with Lupus, she even needed to embrace a new relationship with the sun. What she really needed was information on how to live with lupus and more importantly, live well. This realization was a turning point and the beginning of her career as an author, blogger and designer.

In order to truly live with lupus, Sara needed a blueprint; a positive approach to managing the disease. She chartered a new plan for herself and turned it into the book “Despite Lupus: How to Live Well with a Chronic Illness”. She addressed the mistakes she made in denying her disease in her first few years and explained how people and their support teams can respond to their diagnosis in a positive and healthy way. When life hands you lemons, you make lemonade and share it with everyone!

“When I first went on tour to share the book readers would say things like, ‘gosh, I could have written pages 12 to 15 myself!’ Others have handed the book to family and friends to help them understand their life with lupus. When you have a chronic illness, it can be hard to find your voice and share what you’re experiencing with others. Helping people overcome that and be positive about it means so much to me.”

The key to living well is not only Sara’s positive “can do” approach, but also understanding her needs and sharing them with her support team. You need to be your own patient advocate. She learned to say “no” in order to care for herself. When she says no, it’s not about putting her life on hold to care for herself. It’s all about caring for herself so life can continue. This can be a tough idea to embrace, especially for working mothers. Luckily, her husband has been there since her diagnosis. Her daughters, now eight and 10 years old, have grown up with a mother with lupus.

“I am who I am and I’m better when I’m healthy and happy. My kids understand that having a healthy mom means letting me rest. If I need to take a nap instead of going to a softball game out in the sun, they fully embrace it and support me. They even go so far as to make sure I’m protecting myself, like wearing skin protective clothing and a sun hat outside. Watching them grow up with empathy and compassion for their mother and others is wonderful. My illness might slow me down, but I will not judge myself for going at my own pace in my professional or personal life. It’s what I need to do to live well.”

To learn more about Sara’s journey with lupus, her workshops, book or one-of-a-kind pill cases, you can visit her blog Despite Lupus or website Pillfold. Five percent of all purchases are donated to various organizations that are promoting awareness, or doing something to improve the lives of lupus patients.

Sara will also be the keynote speaker on October 27th for the 18th Annual North Carolina Lupus Summit.

No Comments
Together We Will

Together We Will… Navigate Skin Cancer Prevention, Detection and Treatment

Some people are born for the careers they choose. Others wake up one day thinking they need a change, then suddenly discover they’re meant to help save lives. That’s what happened to Dan Latore, Executive Director of The Skin Cancer Foundation. He’d never dreamed he’d work for a cancer foundation, but now his job is to dream up ways to elevate the Foundation’s purpose and mission.

COOLIBAR: How did you become the Executive Director of The Skin Cancer Foundation?

LATORE: I don’t think anyone grows up thinking they want to be the executive director of a cancer foundation. But twelve years after I joined the team here, I still love it.

C: You started your career as an ad and sales guy, what is it about The Skin Cancer Foundation that has kept you going for over a decade?

L: The results. They’re not about ROI on ad dollars spent or sales numbers, they’re about people. One of my favorite stories is about a woman who donated $20 on behalf of her husband Gus who had passed from melanoma. It was all she could spare, but it was important to her to give to an organization that could potentially help the next “Gus”. We hear stories like this every day. When you have the ability to touch people’s lives through the work you do, there is nothing more inspiring.

C: How do you do it? How do you and your colleagues continue to support this community in such an impactful way?

L: The work we do is so essential when it comes to helping people through every stage of diagnosis and from every vantage point, whether they’re a patient, doctor or caregiver. We literally save lives with early detection programs like Destination: Healthy Skin, our RV that travels across the country to screen and educate people about melanoma. SkinCancer.org is often THE source for information. Nearly 9 million people each year look to our website to get the answers they need. Our Seal of Recommendation and information—all verified by physicians and dermatologists—help break through the fear. Knowledge is power. We are all about empowering people to get the right diagnosis, the right treatment and the right help.

C: Donors and potential donors want to know…where does the money go and how do you decide how much is donated?

L: We’re 100% a people-driven non-profit. Every dollar we get whether it’s $20 from a personal donor or a $25,000 grant is meant to save lives either through education, advocacy or research. It’s our job to ensure that every donation is used in a way that is smart, efficient, impactful and durable. We’ve worked with the government and National Council for Skin Cancer Prevention to tackle issues like tanning bed regulations and FDA limits on sunscreen ingredients. We source and support “Young Investigators”, or doctors who are poised to make scientific breakthroughs. Most importantly, we educate people.

C: What progress have you seen on behalf of your mission?

L: Currently, the incidence of melanoma and skin cancer are on the rise, but mortality rates are falling. This is progress. We want more people to get checked and diagnosed early so that they can be treated, and lives can be saved. We’ve turned early detection into a trend alongside rash guards for children, higher SPF in retail stores, and sun protection clothing for sportsmen. We’re also seeing the impact of our “Go With Your Own Glow” campaign with celebrities embracing their natural skin tone and devaluing the beauty standard of tanning.

C: Can you share a personal story about the important work SCF does?

L: There have been SO many stories! One that stands out is Linda Nagel. Linda lost her husband Todd Nagel, to melanoma ten years ago when he was in his mid-thirties. Since then she has hosted The Todd Nagel Open, a golf tournament that raises about $25,000 annually for skin cancer research. With her help, we grant the amount to a “Young Investigator” poised to make a difference. I look forward to the day when one of Linda’s doctors makes a breakthrough in honor of her late husband.

C: What is the most important thing you want our readers to know about the Skin Cancer Foundation?

L: We’re here to help. One of our most vital assets is SkinCancer.org. Google “skin cancer” and you will get a large number of resources available. When someone is diagnosed, they are overwhelmed and confused. Through our network of doctors, we can provide credible information and resources that support patients and caregivers in a way that is understandable. We work hard to help everyone find what they need quickly and effectively.  It’s all a part of our mission to save lives through education, prevention, early detection, and prompt treatment of the world’s most common cancer.

 

Latore and his team will be at The Skin Cancer Foundation’s Champions for Change Gala this Thursday, October 25th at the Plaza in New York City. To learn more about the event or to make a donation please visit: https://www.skincancer.org/events/gala.

No Comments
Skin Diaries

Nicole O’Neill: “I Was Fortunately Diagnosed with Cancer 3 Times”

It’s still hard to believe, but by the age of 30, I was fortunately diagnosed with cancer 3 times, faced over a dozen other precancerous scares and experienced some heart-wrenching losses due to cancer.

Yes, you read that correctly, I said I have been fortunate. You are not crazy.

However, I have not always felt this way. Each time there was a period of total fear, confusion and almost paralysis. I cannot quite explain what it is like to get that news and be afraid for your life. It truly stops you in your tracks. Everything becomes blurry, nothing seems to matter and all you can think is, “Am I going to die… Did I really live?”

But each time I was blessed with a whole new perspective on life. I learned so much more about who I was and what I wanted my life to stand for…

My first melanoma opened my eyes to how little self-confidence I had and how superficial my life was.

I am totally guilty of spending countless hours in the sun, tanning booths and wearing the oil. Truthfully, I didn’t really know any better when I was younger. Even though I had a handful of spots removed in high school, it didn’t really sink in until I was diagnosed with my first melanoma at 24. Looking back, all I remember was that I felt so much better about myself when I was tan. I was very fortunate that we caught the melanoma early enough, so surgery was all that was necessary. But so much changed with this diagnosis. Suddenly, I became aware of the superficiality of my life. How much of my self-confidence came from “being tan & looking good”. I consider this my first wakeup call in life. If it weren’t for this diagnosis, I may have never started to take better care of myself from the inside out. I learned to make self-care a priority, and more than anything it started the journey of true self-love for me. It made me want to be a better person and with that I learned that beauty and confidence are about so much more than what’s on the inside.

My second melanoma woke me up to just how precious life is.

After my first melanoma, my health and sun safety became a top priority. You can imagine my frustration, my fear when I was diagnosed with a second melanoma 3 years later. I remember thinking “but how!? I have been doing everything right. This is so unfair!” Initially, it was numbing. But then, once I processed the news, I realized pouting about it wasn’t going to change it.

After my 2nd diagnosis, I made a promise to myself… I’ve been given another chance here. This life, it’s not something I am going to waste. With that, I started to live with the end in mind. You could say I started to live a bucket list life.

I couldn’t be in the sun anymore, but I could be more adventurous. It sparked my passion for new activities way out of my comfort zone.

It helped me shift my priorities… I stopped putting work first and spent more time with my friends and family.

I refused to just go through the motions and put off all the things I really wanted to do. Instead, I started to be so much more proactive with my life. I started a business that would allow me to feel more fulfilled, made traveling a non-negotiable, became more charitable, committed to ongoing growth and I could go on. You could say I completely leveled up my life after my 2nd melanoma and looking back the diagnosis was a catalyst that changed the trajectory of my whole life in such a positive way.

Over the next few years, I would face a couple more pre-cancerous scares and then be diagnosed with thyroid cancer when I was 30. We still to this day are not sure if that was related to the melanoma. But I am forever grateful to my dermatologist for his care and help through this time. This was probably the fight that hit me the hardest. Truthfully, I was pissed. I was sad. I was terrified. And then when I almost lost my voice… I was broken.

Getting through this time was tough, but what finally pulled me through was finding a spiritual outlet and thinking of all the people who had not been so fortunate in their own fight. I could go on and on telling you about all the lessons and life shifts cancer has exposed me to. But the most powerful thing I learned is that bad things happen. There might be times when life tries to knock you down and you cannot control that. However, what you can control is how you choose to react to it. You can choose to crumble, or you can choose to feel the emotions, feel the fear and the pain… but then let it wake you up in life and use it as a catalyst for living your life more intentionally.

We all only get one life and it’s ours for the taking. I pray you never have to face such terrifying wakeup calls, but if you do, please know that there is some positive that can come out of it. It might be hard to see initially when you are trying to navigate through the fear, but you are powerful, you have a purpose here. Have hope, fight like hell and focus on doing whatever you can to move forward, even if it’s just one tiny step at a time.

XO Nicole

1 Comment
Together We Will

Together We Will… Fight for Our Family and Others

As part of our “Together We Will” series, Coolibar had the opportunity to talk to Steven Silverstein about his journey from a shocking stage-4 diagnosis to today. Here is Steven Silverstein’s remarkable story in his own words.

“I always went to a derm. My sister is a derm. Even with that, I still had stage 4 melanoma that was misdiagnosed by my dermatologist and a plastic surgeon,” said Steven Silverstein as the conversation started. “I had something on my face that had been removed and it didn’t go to a lab, labs weren’t standard back then,” he said. “Sometime later, I had swelling on my neck and got a needle biopsy.” By then the cancer was in his liver and the doctors told him not to bother having surgery. “Why go thru that?” they said. They wrote him off. But they didn’t really know Steven Silverstein.

“Here’s the thing, my daughters were 13 and 16 when I was diagnosed. I wasn’t going to give up without a fight. I wanted to get as much of the tumor burden out, tumor out, so I decided to have the neck dissection.” Steven told us that there were no clinical trials at that time, so after his surgery, he did a “chemo cocktail”, which did not work, then direct chemoembolization to his liver.

“What I wanted was a systemic approach, a protocol,” said Steven, sounding frustrated and impatient. After his chemo, he started researching options. Interleukin-2 (IL2) was available but its reputation was brutal. “I was told it had a 6% survival rate for someone in my situation,” Steven pauses, the memory hangs in the air. The regimen was brutal. “I would go to the hospital for a week, get IL2 every 8 hours for seven days, then go recover for three weeks before starting another cycle. My hospital time was spent in the intensive care unit for 4 cycles, over 4 months, and I had lots of challenging side effects.”

With limited options left, Steven was forced to sell his family business to protect his family and other interests. After all that, Steven asked his doctors if there was anything proactive he could do. He did GM-CSF, a drug used to fast-track the recovery of white blood cells following chemotherapy, for two years. But, once again, there was no protocol. The use of clinical protocols allows doctors to offer appropriate treatments and care. In typical Steven fashion, he turned a dead-end into a turning point. “I was curious about how drugs get to the doctor’s practice. Why were there medications that sounded so promising, yet weren’t tested and approved for melanoma?” He had found his mission.

Today, Steven Silverstein is a 15-year survivor of stage 4 melanoma. He’s also the Melanoma Research Foundation’s Chairman of the Board and his story underscores the MRF ’s mission to “transform melanoma from one of the deadliest cancers to one of the most treatable through research, education and advocacy.”

Steven is determined to see that the MRF funds grants with leading scientists. After all, “research” is their middle name. He has gotten to know many the doctors and scientists working to treat and cure melanoma. He is dedicated to making connections for people, to get them the kind of care he had to unrelentingly fight for himself.

Steven tells us he got involved with MRF because they’re patient-centric and grassroots. “It resonated. I like the buddy program, meeting people and working with them 1-1. The local events keep it real and it’s very gratifying to help other people.” In fact, MRF has a community fund-raising toolkit for smaller markets to do events, inspired by a personal story. “I spoke with a woman in a remote area who had lost her son. She apologized for only being able to raise a small amount. She does a pizza party once a year, educating 20 or so people about melanoma prevention. Well, I couldn’t accept her apology. Because, within a few years, she had educated her entire community about sun safety and melanoma! So, the money was really secondary!” He continues, “THIS is MRF. It’s not just about the fund-raising, it’s about education, dollars raised AND people touched.”

In addition to the MRF’s science grants, education materials and symposiums, the organization promotes advocacy. In 2009, MRF started a program through the Department of Defense, including 4-5 cancer groups sharing 4-million dollars. Today, through their continued advocacy efforts and the help of the great team at the Melanoma Research Alliance, that number has grown to $80 million to be shared between 17 cancer groups. Steven proudly notes, “Out of $250M of research funding to 2017, melanoma got $50M. MRF also funds $1-1.5M per year themselves.”

Steven Silverstein, MRF Chairman of the Board, is a volunteer. He tells us that 60% of their board members are stage-4 survivors. They are patients from various trials over time. They are all volunteers. They are all warriors.

Steven started this journey when his daughters were teenagers. He has now lived to attend both of his girl’s weddings and hold his first grandchild.

No Comments
Skin Diaries

Trapped and Lost, a Lupus Patient Makes a Radical Call

I’ll never forget the day my family moved from Long Island, New York to Fort Lauderdale, Florida when I was a child. Sunshine, sandy beaches, and just about every outdoor sport and activity at your fingertips all year long – it seemed like paradise. But as I grew into a teenager and young adult, being in the sun started to not sit well with my body. A weird rash would rear its head within a few hours, fatigue, sores, and other strange flu-like symptoms. My family and I always brushed it off as “too much sun,” and anyone who has graced the beaches of Fort Lauderdale knows the intensity of the sun’s rays in that area.

But when I was unexpectedly diagnosed with Lupus at the age of 23, the photosensitivity made complete sense.

Up to 70% of lupus patients deal with some sort of photosensitivity, meaning their symptoms get worse or are brought on by UV rays and/or heat. Today, just five to ten minutes in moderate sunlight can knock me down for days. I also learned any UV ray can set off a lupus flare, even certain types of indoor lighting.

As the years progressed, and my disease activity worsened, I tried so hard to stay out of the sun – almost an impossibility when living in South Florida. Suddenly, I became a prisoner in my own home, not able to enjoy outdoor activities or even a walk with my husband until after 7 or 8 p.m. And photosensitivity wasn’t the only Lupus symptom I was dealing with. In addition to symptoms from sunlight, I was also dealing with fevers, mini-strokes, blood involvement, and a brain aneurysm. The Lupus became so severe at one point, I became wheelchair bound and couldn’t leave my house for months. Sunshine, people, outdoors and life, in general, bustled around me and I felt trapped.

It was around this time that my husband convinced me to take a road trip north to New York  (where we were both born). Fall season had just started and the weather was cooling off; we thought it may be an ideal time to go as the heat and sun wouldn’t be intense.

Little did I know, it would be a life-changing trip.

We spent three weeks in our home state, visiting family and friends, and doing a good amount of exploring. And then we came to a revelation. I hadn’t had nearly as many fevers, wasn’t as fatigued, and wasn’t taking as much medicine as usual. The main difference we noticed was the weather. We hit a cold front while on our trip and most days were overcast and in the 40s. Though some Lupus patients actually feel better in the heat, it seemed the cold weather worked wonders for my body.

And then we did the unthinkable – packed up our entire life and moved back to New York six weeks later, not too far from Niagara Falls. The winters are brutal…and to be honest, I love every minute of them. The love affair between me and the cold weather is still going strong almost six years later. Of course, I do love the sunshine of summer and hiking near local waterfalls. But I have something in my “toolkit” now that I didn’t have 17 years ago when I was diagnosed – Coolibar clothing.

I remember the first time I heard about Coolibar and thought, can you really wear something that will protect you from the sun?  It sounded genius and perfect for people like me. Their long-sleeve t-shirts, rash guard, and wide-brimmed hats are my favorites and all perfect attire for somewhat sunny days here in Western New York.

I still have my ups and downs with lupus. Typically, I get IV treatments almost weekly at a nearby hospital, but the disease hasn’t broken my adventurous spirit and love for life. On my good days, I enjoy yoga, cooking, and creating the perfect recipe and food photo for my job as a food and health journalist. My husband, our rescue dog and I still love road trips and exploring – except now we venture to the coldest places possible. Two recent adventures have been Alaska and Nova Scotia (both gorgeous)… and you better believe my arsenal of Coolibar comes with me every time!

If you or someone you know has lupus, I’d love for you to come join us at LupusChick.com, a nonprofit autoimmune community I started 10 years ago. There we talk about every subject you can think of when it comes to chronic illness!

See you there.

XO Marisa

No Comments
Together We Will

Together We Will… Cure Ocular Melanoma

We often think of melanoma as a cancer of the skin, but ocular melanoma, a lesser known form of melanoma, can develop in the eye. There are only a small number of physicians in the US who specialize in ophthalmic oncology. One of those specialists is Dr. David Abramson, Chief of Ophthalmic Oncology Service, at Memorial Sloan Kettering Cancer Center (MSK) and Professor of Ophthalmology at Weill-Cornell Medical Center. Dr. Abramson will be honored with the CURE OM Vision of Hope Award at the Melanoma Research Foundation’s 17th Annual Wings of Hope for Melanoma gala in New York City this October.

Founded in 2011, CURE OM (the Community United for Research and Education of Ocular Melanoma) is the MRF’s initiative to increase awareness, education, treatment and research funding for ocular melanoma, while improving the lives of people affected by this disease.

 

As Chief of Ophthalmic Oncology Service, Dr. Abramson utilizes the Center’s close associations with specialists in pediatrics, radiation oncology, and medicine, to offer coordinated, state-of-the-art care with access to novel therapies and clinical trials not available anywhere else in the country. We had the honor of speaking with Dr. Abramson about his specialized path:

COOLIBAR: How did you find your way into the specialization of ophthalmic oncology?

ABRAMSON: I was fortunate to train in Ophthalmology at Columbia Presbyterian in New York which-at the time-had the world leaders in ophthalmic oncology (Algernon Reese MD and Robert Ellsworth, MD). I love the field of Ophthalmology but wanted to do something that made use of my scientific background, surgical training (I have performed more than 7,500 surgeries), research skills (I have published more than 700 papers), desire to help women and men, adults and children. I did a fellowship in ophthalmic oncology and did additional specialized training in pathology at the Armed Forces Institute of Pathology and Radiation Oncology. I am the only physician at MSK tenured in Surgery, Pediatrics and Radiation Oncology.

C: Have you seen a significant increase in the number of melanoma in the eye diagnosis year after year?

A: No but these cases are handled by only a small number of physicians in the US so we are quite busy seeing patients at MSK.

C: How does the MRF help you do the work you do?

A: Research doesn’t just happen any more than a car drives without gas. Money and awareness are the fuel for research and without that our car doesn’t go. MRF does both.

C: What inspires you to continue to pursue your work each day.

A: I am inspired by my failures, not my success. I try to understand why we failed, what we can do to be more successful and commit myself to those patients who have lost their battle with cancer. I will stop when I cure 100% of patients with no side effects.

C: Is there anything else you would like to share about the work you do?

A: I am the quarterback of a team and while it helps for me to call good plays our success is a result of that team. My nurses, researchers, colleagues, technicians and even the people who maintain our instruments are critical to success. Without the commitment of a special place like MSK and the support of organizations like the MRF, I would be throwing passes to an empty field.

 

Ocular Melanoma is the most common eye cancer in adults and the second most common location for melanoma. Approximately 2,000 Americans are diagnosed with ocular melanoma each year, and about half of these cases spread to other parts of the body, most commonly to the liver. When this occurs, it is most often fatal. There are treatments to help alleviate symptoms and extend life, but there is no known cure for ocular melanoma.

Ocular melanomas develop between ages 55 and 65 most often and usually are detected on an ophthalmic examination without symptoms. They are a disease of people whose families emigrated from Europe and rare in Asia and Africa. The more north in Europe your family is from the higher the incidence of ocular melanoma. Unlike cutaneous melanomas, sunlight plays no role in their development. Ocular melanoma should be treated by an ophthalmologist who specializes in treating eye cancers as most Ophthalmologists have limited experience in managing these tumors. Dr. Abramson combined his love of Ophthalmology with his scientific background, surgical training, research skills and desire to help people of all ages to become one of the few specialists qualified to treat ocular melanoma. He has trained with pioneers and world leaders in ophthalmic oncology, including Algernon Reese, MD and Robert Ellsworth, MD.

The CURE OM Vision of Hope Award will be formally presented to Dr. Abramson at the Wings of Hope Gala in New York this October. If you would like to attend the Wings of Hope Gala or learn more ways to support the Melanoma Research Foundation, visit: www.melanoma.org/get-involved/signature-events/wings-of-hope-galas.

No Comments