Jacqueline’s Story: When It Comes to Melanoma – Expect the Unexpected


Is there a better time of life than 22?  All the possibilities of life are before us, ready to be explored.  In 2003, Jacqueline Smith was just 22, fresh out of college and ready to take on the world when she received devastating news; she had Stage III melanoma.  What? How could that be? She was young! She didn’t tan!  She is a woman of color.  How could she have melanoma?

Now, all these years later, Jacqueline shares her story in the hope it raises awareness that everyone is at risk for melanoma no matter their age, gender or race.  As a survivor with a career in patient advocacy and research,  Jacqueline offers this glimpse of what life is like for a young melanoma patient. 

“Sickness has always surrounded me and on November 29, 2006, I learned it had finally engulfed me.  At age 28, during the first semester of my doctoral program in sociology at Syracuse University, I learned I had recurrence of stage III melanoma.  I was devastated. The disease I thought I had beat at age 23 was rearing its ugly head again. Furthermore, the lump I had detected in my bikini line almost a year and a half earlier was not the inflamed lymph node that my gynecologist assured me it was and it was not the result of some minor infection that my primary care provider’s assistant diagnosed.  It was a lymph node filled with cancer. My gynecologist advised, “it is nothing but an inflamed lymph node. If it doesn’t bother you, don’t bother it”.  But it did bother me.  It was not painful but it was unsightly. It was firm and slow growing. Therefore, I wanted this lump removed.  The surgeon performed a needle biopsy. The result? Melanoma.

Again, I was struck with the same question: “how could this be?” I was not a fair skinned, middle-aged Caucasian woman. I was the complete opposite.  I was never a sun-worshipper and have never even entered a tanning salon. I spent all those years performing breast self-exams, watching my salt intake and praying to be saved from diabetes but never did I think I would become a skin cancer patient.  

I sought opinions from several doctors and specialists.  On December 21, 2006, I was told it would be a miracle if I survived another five years.  Needless to say, I spent that holiday season drowning in self-pity and worry mixed with anger and resentment. Though none of us know when we will reach the end, most live everyday with the promise and hope for a new day. However, receiving a cancer diagnosis quickly forces one to face their mortality.

On March 29, 2007, I had a total right groin lymphadenectomy.  I enrolled in the pegylated interferon clinical trial (a form of immunotherapy in which I had to self-administer weekly injections) and subsequently completed 3 months of radiation treatment.  Today, I am thankful to say I am cancer free.

Prior to my diagnosis, I never thought melanoma was a “serious” cancer.  When most people hear of my diagnosis, they assume I simply had a cancerous mole removed.  Few are aware of effects advanced staged melanoma.  I had 16 lymph nodes removed.  I have an eight-inch surgical scar on my right groin and I have a larger radiation scar, which creates a frame around the surgical scar. I have dots permanently tattooed on my right groin marking the radiation site.  I have two permanent scars on my abdomen marking the sight in which I had to administer my interferon injections.  As a result of both surgery and radiation, I suffer from lymphedema in right leg. To keep the lymphedema from progressing, I must wear a compression stocking on my right leg during the day and sleep in a bulky compression brace nightly.  These are things I will have to do for the rest of my life.  I also suffer from cognitive changes resulting from interferon therapy. Advanced melanoma is anything but minor. Fortunately, you can mitigate your risk of developing melanoma. Please, monitor your sub-exposure, diligently wear sunscreen and make sure to see your physician for an annual skin cancer exam.

Jacqueline currently serves in Patient Advocacy and State Government Affairs at Vertex Pharmaceuticals. She is a Doctoral Candidate with over a decade of experience in research, advocacy and cancer survivorship. She sits on a number of Boards including the Claire Marie Foundation and the Melanoma Research Foundation.

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Why is Melanoma Striking So Many Young Men?

Melanoma? It’s a girl thing. Old guys get it.  It only affects fair-skinned people. Right?  Wrong. Dead wrong.

You’ve heard us say it before; If you have skin – you are at risk for melanoma – especially adolescents and young adults who have unique hormonal and lifestyle factors which come into play. The hard truth is this; if not found early – melanoma can kill you.

This Melanoma May, we turn the spotlight on the guys! New research is focused on the surge in the number of young men  between the ages of 15 and 39 who are dying from melanoma. Between 1995 and 2014, diagnosis of melanoma in the head and neck areas increased 51%. Even more unsettling – 60% of those who died – were young men.  Men’s Health Magazine offers a deep dive into the subject!

So why are are adolescent boys and young men more at risk?

As in young people of all genders and races, hormones play a roll. In men, it’s believed surging levels of testosterone can kick-start melanoma making it more invasive and aggressive. Researchers at Oxford University found a  new link between higher levels of testosterone in the blood and increased risk of melanoma in men. Other factors are genetics, immune system and an active sun – soaked lifestyle! 13-39 year olds spend a ton of time in the sun, often without a thought to the need for sunscreen or UPF 50 protective clothing. Add to that the bad habit of visiting tanning booths ( did you know one time can increase your risk 75%? ). It all adds up!

Overall, diagnosis is up 253% in all young people in the last 40 years, making melanoma the second most common cancer in adolescents, and the most common cancer in young adults.

What can you do to protect yourself?  Plenty and it is SO simple!

  • Wear sunscreen every day! At least SPF30 and apply every two hours when out in the sun.  Don’t forget your ears and the back of your the neck. Be especially attentive to reapplying when swimming, sweating or going shirtless.
  • Invest in UPF50 clothing and hats for long days in the sun! It blocks 98% of the sun’s damaging rays from your skin. Regular clothing only blocks 6% of the UV rays.
  • Wear sunglasses to protect your eyes from Occular Melanoma.
  • Check your body monthly for any skin or mole changes. Keep in mind, melanoma in young people can be colorless, pink or even look like a wart. Listen to that inner voice and make an appointment with a dermatologist should anything look unusual.
  • Get a full-body dermoscopy skin screening by a dermatologist every year.  Your general practitioner may be great, but understand that only a dermatologist is properly trained to catch any potential mole changes at the very earliest point.

There are a number of other factors that can come into play when it comes to melanoma in the adolescent and young adult population. You can learn more here  or by checking out the research section on our website

Take care of your skin. Take care of you, and be aware! Because awareness saves lives. 

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The Difference Between Melanoma and Skin Cancer – Awareness That Could Save Your Life

Let’s make one thing clear; the words “just” and “ cancer” should never be linked in the same sentence.  But due to the fact that basal cell or squamous cell carcinomas are 98 percent treatable and unlikely to spread through the body, many people think melanoma is “just” skin cancer and thus tend to delay having a dermatologist check changes in their skin or moles.  That misnomer can be deadly. Melanoma is not like other skin cancers. It is a beast within itself; extremely aggressive, moving beyond the skin, often spreading to other parts of the body. Consider this: melanoma is the cause of most skin cancer deaths, claiming one life every 50 minutes.

The risk is especially high in adolescents and young adults where melanoma is more aggressive and invasive than in older patients.

The Dana-Farber Cancer Institute found if a young person develops any form of skin cancer – it is almost always melanoma.In fact diagnosis of melanoma in adolescents and young adults has jumped 253% in the last 40 years.  Melanoma doesn’t wait for COVID. It doesn’t wait until for a convenient time in your schedule.  Early detection is the key. Listen to that wise voice in your head. If you notice any changes in your skin, make an appointment with a qualified dermatologist immediately. Learn more about the differences between skin cancer and melanoma from Dermatologist and Claire Marie Medical Advisor, Dr. Diane Orlinsky, M.D., F.A.A.D.

Take care of your skin. Take care of you. Be aware; because awareness saves lives.

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Jamie’s Story: Pregnancy, Hormones and Melanoma

Pregnancy is such a joyful and stressful time! An expectant mother has so many things to consider in preparing for the arrival of her new little one – melanoma is typically is not among them. But amid the visits to the obstetrician, don’t forget to set time aside to see your dermatologist.  Hormonal changes, genetics and a suppressed immune system can create the perfect storm in the development of melanoma in pregnant women.

Jamie Martell, a young mom in Maryland was blindsided by her diagnosis.  She generously shares her story in the hopes that it will raise awareness of the unforeseen risk to young moms. 

“I was 27 years old – newly married to the man of my dreams and pregnant with our first child. A boy! All of those beautiful wonders of life I had imagined were unfolding right before my eyes.

I had heard of melanoma before, but I can assure you that I never took it seriously or thought it was something that could happen to me. To me, it was just something that happened to older people that got a a little too much sun throughout their life. 

   I was around 5 months pregnant when I noticed a mole on my thigh start to drastically change. It went from something I hardly noticed to something I could no longer ignore. My husband encouraged me for weeks to get it checked out and thankfully I finally listened. It was stage IIb Melanoma – which meant it was aggressive and growing rapidly. I was quickly scheduled for a surgery to remove the cancer and some surrounding skin. We then received the news that the surrounding skin was free of Melanoma cells and so at that point we thought I was in the clear. 

A month after delivering my son we found out how very wrong I was. Not only did we discover that Melanoma isn’t always just something you can “cut out”, but it also was thriving off of the hormones from my pregnancy

The cancer had very quickly spread to multiple lymph nodes within my body and my oncologist revealed that another surgery wouldn’t cut it. I would need to start a systemic treatment called immunotherapy.

A couple of years later, after a lot of trial and error, we were thrilled that we had finally found success in a treatment! However, a second pregnancy brought the Melanoma roaring right back into my world. I was forced to deliver our daughter (Maisie) 6 weeks early in order to start yet another treatment. 

I am so passionate that everybody should see a dermatologist annually, but especially passionate that women should see a dermatologist during their pregnancy. The hormonal changes in your body during this time can result in changes to your skin.

Something so easy and simple to do could save losing precious moments with your children, it could save the pain your family endures as they wish they could take it all on for you, it could save you from surgery after surgery and treatment after treatment…it could ultimately save your life!”


Jamie Martell: Wife, Mother, Melanoma Survivor

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The Damaging Affect of Blue Light on Your Skin

Do you think because you’re stuck self-isolating indoors, awaiting the start of your latest Zoom conference during COVID 19 you can skip the sunscreen?  Well, think again! 

Your skin is still exposed to all forms of visible light which includes not only the damaging UV rays of the sun streaming through your windows but especially to the blue light spectrum which emits energy (irradiance) thought to be cumulative and damaging –  ranging from halogen light bulbs, computer screens, televisions, smart phones, to lamps used in nail salons.

Dermatologist Dr. Eva Simmons O’Brien, M.D., F.A.A.D., Co-Founder of the Claire Marie Foundation Medical Advisory, recommends you wear sunscreen daily indoors as well as outdoors to ensure protection of your skin against the entire spectrum of light. “Visible light can induce pigment changes and may have an adverse cumulative effect on the overall health of your skin.” Dr. Simmons O’Brien says.  This can be of extreme importance for people of color and those who are at risk for  melasma; a condition in which the pigmentation of the skin darkens or becomes discolored. melasma is thought to be caused by UV damage, genetic predisposition, and hormone changes. Although it can affect anyone, melasma is more common in women – especially pregnant women and those who are taking contraceptives or hormone replacement therapy. 

Dr. Simmons O’Brien also advises to always make certain your sunscreens contain physical blockers such as titanium dioxide and/or zinc oxide in their formulations. The micronized zinc preparations won’t leave you looking pasty or chalky!  Just add it into your daily routine so you can be skin safe while you #StaySafe

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Congratulations to Our 2020 Claire Marie Arts & Design Scholar

Congratulations to Allison, “Allie”  McDavid, the 2020 Recipient of the Claire Marie Scholarship in Arts & Design!

 The Notre Dame Preparatory Senior got the news via NDP art teacher Anne Walker while isolated at her home, but the lack of fanfare did not diminish her excitement! Allie begins her studies this fall at Miami University in Oxford, Ohio where she will immerse herself in Interior and Architectural Designs.

Every year since 2015, the $5,000 award is given to a graduating senior from Claire’s alma mater, Notre Dame Preparatory School in Towson Maryland to support the recipient’s desire to study design arts in college. It was a dream of Claire’s to launch a career in interior design and we are thrilled to see other young women share the same passion and excitement. Each year, our winners are selected by an exquisite team of noted design professionals from across the country! They bring expertise in fine arts, theatrical, animation, interiors, photography and film. Our thanks to our CMF Scholarship Committee: Katie Fico with Walt Disney Animation Studio, Los Angeles based Interior Designer Stacey Vuduris, Theatrical Designer Timothy Swiss of Los Angeles, Photographer Susannah Dowell of Colorado and Maryland’s First Lady and MICA Educator Advocate, Mrs. Yumi Hogan. 

Allie said her phone lit up with excited messages from her classmates when the announcement was made! “What an honor it is to be able to represent such beautiful young women and the inspiring Claire Marie Foundation.” 

Allie joins past recipients who have studied in Claire’s memory at University of Southern California, Rollins College, University of Virginia and Savannah College of Arts & Design. 

Allie, good luck on your academic and professional adventure! We can’t wait to see the joy, color and beauty you bring to the world!

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Oh No! Found a Suspicious Mole or Skin Lesion Amid COVID-19 Shut-Down? Here’s What To Do!

In this era of COVID19 it can be challenging to manage the common practice of healthcare. Thus, many routine medical concerns, including dermatology screenings for skin cancer and melanoma, are on hold for most people.

In an attempt to manage their own health as best they can, some patients may turn to smartphone apps to assess a suspicious skin lesion. That is not a good idea!  A recent study published in the Journal of the American Medical Association ( JAMA) found these leading apps offer false results. SkinVision and SkinScan, the two most popular apps, were both missing melanomas and offering false positive readings. Furthermore, 45% of the time, the images couldn’t even be interpreted by the apps.  It should be noted that the FDA has not yet approved these apps for the diagnosis of melanoma.

What should you do if you can’t get an appointment with your dermatologist and you have a suspicious skin lesion?  We reached out to Claire Marie Foundation Medical Advisor, Dr. Meg R. Gerstenblith, M.D., a Clinical Assistant Professor in the Department of Dermatology at Case Western Reserve University and a Clinical Associate in the Department of Dermatology at Johns Hopkins School of Medicine. Here is what Dr. Gerstenblith had to say:

“The past few months, our lives have changed dramatically.  Each one of us has been impacted by COVID19, even if we haven’t personally been sick.  Routine medical visits, including skin exams by dermatologists, have been pushed back.  We won’t fully appreciate the effects of these delays, although in the context of cancer screening and cancer care, some hypothesize that the impact will be felt for years to come.

However, many dermatologists’ offices are open for telemedicine visits and urgent concerns, including the diagnosis and treatment of aggressive skin cancers. 

In a typical telemedicine visit, a patient will upload photos of a suspicious lesion (or lesions) and, during the video visit, the dermatologist will review the photos and obtain critical history information from the patient with regard to how long the patient has noticed the lesion, whether or not it is symptomatic, and whether or not it has changed in any respect. 

With this information, dermatologists can usually come up with a sound plan for that patient.  If the dermatologist is concerned, most are be able to see the patient in the office for the appropriate biopsy or excision of a suspicious lesion.  Our surgeons are performing skin cancer surgery as well.  We are doing our best to avoid delays in diagnosing and treating potentially aggressive skin cancers.  For some skin cancers that are not very aggressive, such as a superficial basal cell carcinoma, dermatologists may recommend waiting to treat those since they are highly unlikely to grow or spread.  

For the patient with the suspicious lesion, that patient should contact his/her dermatologist and set up a telemedicine visit.  The dermatologist can then advise the patient on whether or not he/she needs to be seen in person for an examination or a biopsy. 

If that patient’s dermatologist is not open or not conducting telemedicine visits, there are likely other offices that are open in that patient’s community–and the patient should seek out another dermatologist or speak to their primary care doctor to get assistance reaching a dermatologist. 

Most dermatology groups within academic hospitals are open during this COVID19 pandemic as are many private practices.  We would not recommend using any of the lesion detection apps, since studies have shown these to be ineffective.”

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Choosing For You and Baby: The Best Sunscreens For Pregnant Moms

The need to take care of your skin warrants special attention during pregnancy – especially when it comes to UV sun exposure. 

Pregnancy may bring an added risk for the development of melanoma. Hormonal changes, combined with genetics, have been found to be a link during pregnancy in some women. 

So along with getting a full body skin screening from your dermatologist, you also need to remember to wear sunscreen everyday.

What is the best choice for sunscreen to protect both you and your little one? We asked  Dr. Diane Orlinsky, MD, F.A.A.D.. Dr. Orlinsky is a board certified Dermatologist and Assistant Professor of Internal Medicine at the Johns Hopkins University School of Medicine. She also sits on the Claire Marie Foundation Medical Advisory.

Dr. Orlinsky says when it comes to using sunscreen during pregnancy, choose a product that offers a physical blocker instead of a chemical one. What’s the difference? Chemical blockers allow some of the sun’s rays to penetrate the skin. Physical blockers actually repel the UV rays off the skin. “Physical blockers are perfect for pregnancy because they consist of active mineral ingredients which are natural and of course that’s always the better choice! Look for an SPF of at least 30 with ingredients like zinc oxide and titanium dioxide.

There are elegant products such as Eryfotona Actinica Mineral Sunscreen by ISDIN or Colorescience Face Shield which offer great protection without leaving your skin looking chalky. Look for something which is fragrance free and really evaluate the label. Avoid products which have chemicals like oxybenzone, octinoxate or avobenzone.”

Of course it’s always important to remember to wear hats or clothing made of UPF 50 materials on those days you are at the beach or in the sun for long periods of time. Remember, taking care of you is as important as taking care of your baby!

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The Ignored Risk: People of Color Do Get Melanoma

If you have skin – you are at risk for melanoma. That’s it. Plain and simple. EVERYONE – no matter age, gender or race can develop melanoma. It does not discriminate and it isn’t always about the sun. Melanoma can occur due to genetics and hormonal changes related to puberty and pregnancy – especially among adolescents and young adults where diagnosis is at “epidemic proportions”. 

Many people of color live under the false assumption that they cannot develop melanoma because higher levels of melanin in their skin offer immunity to damaging rays of the sun. Yes, there is less risk than those with  fair skin, but when melanoma does occur, it is usually late stage with a much worse prognosis. Consider this: on the average – only 65% of patients of color diagnosed with melanoma survive five years compared to 91% of white patients. Why? A clear lack of awareness, education and preventive care among patients and the medical profession. 

Acral Lentiginous Melanoma or ALM is is the most common form of melanoma in people with darker skin and those of Asian descent although it can develop in all skin colors. It is found on the sole of the foot, the palm of the hand or under the nails. It can develop from an existing mole or pop out of nowhere! Although the actual cause is not clear, ALM appears more related to genetics than sun exposure. It is the form of melanoma that famously claimed the life of reggae icon Bob Marley.

Death rates from ALM are higher than other forms of melanoma mostly because it is often overlooked due to a lack of awareness and education among the patients and physicians. So what can you do? Begin by taking care of yourself!

  • Wear SPF 30 or 50 sunscreen every dayno matter your skin color.  It’s a challenge to find  a sunscreen that blends well with darker skin. Sunscreens containing titanium dioxide and/or zinc oxide are the answer. Look for formulas that are micronized zinc preparations. They do especially well on darker skin tones by offering protection without a chalky look!
  • Get screened annually by a certified dermatologist! Make sure the examination includes an evaluation of your feet, hands and nails. Keep in mind general practitioners, internists, or pediatricians are not trained in dermatology and can overlook any suspicious moles. You need a dermatologist who utilizes dermatscopy. 
  • Wear UPF 50 clothing during extended time in the sun. There are so many wonderful sports and fashion looks out there; Sun50, Coolibar, Athleta, Columbia Sports, the list goes on and on. Think of it as shopping to stay healthy!
  • Check yourself out! Evaluate your own skin monthly and be sure to call a dermatologist if you see any unusual changes. Listen to the voice in your head. Your instincts usually are right!

Take charge of your skin and spread the word! Prevention is the cure when it comes to melanoma. Stay well. Stay safe. #livelifelikeclaire

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Adolescents, Young Adults, Cancer & Anxiety; Finding Control Amid COVID


April Moran, LCSW-C is a Cognitive Behavioral Therapist who specializes in the treatment of anxiety disorders in adolescents, adults and families. As a member of the Claire Marie Foundation Medical Advisory, she offers this insight for young cancer patients – and anyone seeking help in coping with the uncertainty that is COVD-19.

This week is Adolescent and Young Adult Cancer Awareness Week, yet this year the focus for any adolescent or young adult is different.  Their focus might be on how their treatment has been interrupted and or put on hold due to the COVID 19 crisis.  Expected anxiety about their cancer diagnosis has been replaced with anxiety about access to treatment.  The thing is, cancer doesn’t quiet down or go to sleep just because hospitals and treatment centers are either now a place of high risk for our youth or shut down all together.  It’s as if a banner saying “I’m living with uncertainty x10” is flying over them.  Read on to get some answers.

  • Look at your thoughts.  Finding a way to accept this current COVID situation and manage our feelings of powerlessness without falling into despair is of immediate importance right now.  We don’t get to choose what is happening, but we get to choose how we respond to it.  When we feel powerless, our power is always in how we respond.  This concept drew me to cognitive therapy as a young therapist.  Our thoughts directly create our emotions.  If you have the thought “this is awful, and I can’t handle it”, you will undoubtably feel anxious and afraid.  If you change your thought to “I’ve had lots of challenges before.  I don’t like this uncertainty, but I’m finding ways to handle it one day at a time”, you will feel less anxious and possibly hopeful.  As someone battling cancer, the feeling of hope is important to your physical and mental health.
  • Create Meaning and Practice Gratitude.  One of the ways we can choose to cope is to do things that create meaning.  Martin Seligman is a therapist I have long admired.  He talks about how when we pursue meaning (starting a peer support group) and connect (reaching out to other adolescents and young adults with cancer to check on them) we will experience positive emotion.  This is the control we do have.  As a therapist,  I often ask my young clients going through times where they experience high levels of powerlessness to practice gratitude.  This video by Dr. Sood best illustrates what I’m talking about.
  • Do something you are good at.  Another important way to manage during this time and give you a sense of control is to do something you are good at once a day.  It could be anything from yoga to making others laugh.  You will feel a quick surge in your mood.
  • Set up “worry time”. Sometimes despite all efforts – worry and “what if” thoughts seep into our minds.  Sometimes it feels impossible not to worry.  Set up a “worry time” for about 15 minutes a day at the same time, every day.  This is called containment and will help you let go of your worry and stay more present in your day when it’s not “worry time”.  When worries inevitably come, acknowledge them, do your best to remind yourself about worry time and shift your attention to connecting with others, distracting yourself with a movie or doing anything that brings meaning.  This will help you stay more present and connected in the moment.  
  • Connect-even if you don’t feel like it Last but probably most important, try to virtually connect with others.  Group time is essential and helps everyone feel that connection to others – that need to be included.  Being “part of a tribe” goes back to early survival and not getting eaten by wildlife.  It was physically safe to be part of a tribe.  Evolution is slow and our brains still register physical danger even if the danger now is emotional.  Right now, with the need to isolate, we are having a very high stress response to being alone and apart from our tribe.  Teens and young adults with cancer need to create ways to connect more than ever.  

There will be a time when things return to “normal”.  Your treatment will get back on track and you will find new ways to adapt for now.  Having hope gives you the courage to survive.  Take this one moment at a time, one hour at a time, one day at a time.

For more information or to contact April Moran, explore her website


April Moran, LCSW-C



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