A friend of mine is presently being treated for Merkel cell carcinoma and began radiation about a month ago, so I thought I might write a little about this form of skin cancer. Your first thought might be, “What is a Merkel cell? I’ve never heard of it.” Merkel cells lie on the outermost layer of the skin. They were identified in the 1800’s by Friedrick Merkel, a German anatomist. Their complete function has not yet been identified but they are found all over the body in varying amounts, with the highest density on the fingertips, lips, and face where touch sensitivity is at its greatest. They have also been found to produce hormones, although the function of this capacity is still unknown. So this is still very new territory.
Merkel cell carcinoma has been rare but, as with melanoma, the number of occurrences has been increasing rapidly in recent years. Diagnosis can be a little random since doctors are rarely looking for it when it is found. Most of the time it is discovered when a biopsy is being performed for another form of skin cancer and it turns up. It is a like going for a walk and hearing hoof beats behind you. You turn to look at the horse you expected but instead you find a zebra. An early diagnosis can mean minimal treatment and an assurance of being cured. But it is aggressive and can metastasize in its early stage.
The cause of Merkel cell carcinoma is still a mystery, though a few pieces of the puzzle are beginning to come to light. As with melanoma, sunlight is a factor in its growth, yet another reason to follow the safety precautions we recommend with melanoma prevention. Patients with suppressed immune symptoms are at a greater risk of developing this particular cancer as well. Those whose tumors contain more killer T cells and those whose immune systems are able to heal their primary tumor without intervention tend to fare better. In 2008 a common virus, polyomavirus, was found in a vast majority of Merkel cancer cells, at least 80% of the time. This virus rarely causes any symptoms other than in those cases where it contributes to triggering the MCC.
Treatment options are not dissimilar to those for melanoma. When the risk of the tumor spreading is relatively low, surgery alone can be all that is recommended, although a series of radiation treatment sessions is often added to insure the risk of local recurrence is minimized. It may be possible to remove the tumor with a Mohs micrographic surgery when on the face and there is a need to limit the margin it 1 cm. Since such a small margin is taken, radiation is almost always recommended in this case. Chemotherapy can be used initially but MCC develops resistance to these drugs very rapidly. Immune therapy began to advance about 10 years ago and over the last five years a version of immunotherapy using immune checkpoint inhibitors has shown the best results when skin cancer of any kind metastasizes. There are presently four checkpoint inhibitor drugs available for use, which can be used individually, in conjunction with the others, or in conjunction with other treatments.
The prognosis and chances of beating the disease are unique to each individual. Early detection and the state of a person’s immune system are key contributing factors to chances of survival.
Sol Survivors Oregon
Keeping our children safe seems to be a natural thought. We take safety measures every day to protect our children. This includes things like bike helmets, sport protective gear, life jackets, seat belts, smoke free homes, and providing safe environments.
As a mother of a child with a melanoma diagnosis, it has become my mission to remind others about sun safety. Graham was diagnosed with melanoma at the age of 9. He could not even pronounce it. He called called it, “lemonola.” Graham’s melanoma was not sun related, but as I learn more, I have a hard time watching parents neglect some very simple safety measures to minimize the risk of skin cancer.
Graham also feels strongly about sun safety education and melanoma awareness. Graham recently was featured in an article that highlighted the importance of sun safety in teens. Graham wanted to share that boys need to be safe too.
Research is also important, Since Graham’s diagnosis, he has raised over $100,000. This past year he has decided to partner with the Melanoma Research Foundation and hopefully raise enough money to sponsor a pediatric melanoma grant.
No fundraiser is too small, every dollar raised is important. Graham spent some time talking to his congressional leaders about increasing NIH funding. He always says, “If a kid can raise $100,000, imagine what you can do.” As powerful as that is, he has classmates and strangers making and selling bracelets for $1.00. He tells his peers, “Imagine if this is the dollar that funds the hour of research that finds a cure.”
Cheryl and Graham are the founders of Graham's Gift. Graham raises money and awareness by making and selling rubber band bracelets. Each bracelet is $1.00 and has a yellow bead that represents Childhood Cancer Awareness. It is Graham's hope that no child will ever have to go through what he has gone through, and that he will raise enough awareness and funds to make a difference!
A layperson’s explanation of biomarkers and targeted immunotherapy
Although people share many biological similarities, each person is a unique biological environment of its own. The melanoma animal grows and defends itself based on the environment in which it has taken residence. This is one of the reasons it has been so difficult to find a standard treatment for this disease. Treatments create similar side effects in all individuals but may not have the same effect on the melanoma.
One of the most promising breakthroughs in melanoma treatment in recent years is the area of immunotherapy. There is presently a small but growing assortment of immunotherapy drugs available for melanoma treatment. These have two modes of operation. Interleukin, IL2, which has been available for decades, places the body’s immune system into high gear to attack the cancer. A more recent class of drugs, the “–umab” family (ipilumimab, nivolumab, etc.), removes one of the checkpoint systems the body uses to limit the immune system’s activity in order to protect itself from damage. These are the present weapons in the arsenal and the key is to determine which will be the best for each individual. This is where biomarkers come into play.
According to the National Cancer Institute a biomarker is "a biological molecule found in blood, other body fluids, or tissues that is a sign of a normal or abnormal process, or of a condition or disease. A biomarker may be used to see how well the body responds to a treatment for a disease or condition." Look at it as hunters seeking to kill some prey and using evidence from biomarkers to determine what the prey is. First determine the environment, say the Serengeti. Then examine the tracks and scat of the prey to determine the exact animal, in this case a lion. Next bring together what you know; this will give you the safest and best chance of success. You choose your people and weapons and set out to eliminate the threat as quickly as possible. Your approach will depend on whether you find you are facing a tiger in the jungle or a bear in a forest. To further complicate the issue, melanoma can be an infinite number of hybrids of these environments and animals, which will mean the therapies must also be used in the correct combination with each other and with targeted therapies such as BRAF and MEK inhibitors that attack specific genetic mutations in some melanoma tumors.
All this is even more important because melanoma is adaptable. That is, if not eliminated on the first run it can adapt and protect itself, much like how infections will lose vulnerability to antibiotics but on an accelerated timeline. This underscores the importance of coming up with the correct therapy and dosage for the individual patient so that a maximum dose of the most effective treatment can be delivered the first time. As always, early diagnosis and speed of therapy is key because the less time the melanoma has to grow and prepare its defense, the better chance there is of success.
Sol Survivors Oregon
SolSurvivors Oregon is a local network of patients, supporters, and advocates who educate our community, advocate for sun safety, and are working to improve outcomes with early detection.
Everyone’s life is marked by defining moments. A marriage, the birth of a child, or a job promotion would mark a happy or joyous defining moment. An illness or the loss of a job would mark a sad or unhappy defining moment. I would consider a stage four melanoma diagnosis a tragic defining moment.
Some people are fortunate and their lives are free of any tragic moments. For the Spiegler family our tragic moment came on February 8, 2008. That is the day when Peggy woke up and said to me, “I don’t feel horrible but something is not right.” Two weeks later we were in the doctor’s office at the Abramson Cancer Center at the University of Pennsylvania and learned that Peggy had a stage four melanoma.
Peggy’s bravery in the face of such a dire diagnosis was typical of so many other patients that I have since come into contact with. I do not know where they get their strength. Her gallant fight to beat melanoma lasted only a few months. When she was diagnosed in 2008 there was not much in the arsenal of drugs to help her survive. I once read someone describe how a small platoon of soldiers were all killed by an overwhelming force. The writer said they were not defeated, they were overwhelmed. That is how I will always remember Peggy’s struggle.
After we lost Peggy our family decided that we wanted to do something to honor her name and help prevent other families from going through the same nightmare that we did. We had no definite plan in place but we reached out to our family and friends to help organize our first fundraising event. We have been raising funds ever since then.
In November of 2014 The Peggy Spiegler Melanoma Research Foundation met with six other foundations in Cherry Hill, New Jersey. The intent was to bring small grassroots foundations together to share resources, make our voice louder, and support each other.
As I sat at the table and listened to people tell their stories of how they had lost family members, I was amazed at the strength of these people. They were not going to let melanoma define them. They were going to fight back. I was energized by their strength. I sat there and revealed my innermost feelings to people that I had never met in my life, feelings that I had not shared with my family. I knew that it was safe to do this and that everyone there would know exactly how I felt.
The group of seven original members has grown to over 20 members and I am so proud to be a part of what that group, the Melanoma Action Coalition, has accomplished in two short years. MAC has also helped to redefine the mission of the Peggy Spiegler Melanoma Research Foundation. We are spending more and more time on education and prevention. Our free skin screenings and awareness programs are a big part of what we are doing now to help save lives.
Yes, our family and friends are permanently scarred by the Feb. 8th diagnosis, but we are out there fighting hard so that other families do not have to be defined by that same diagnosis.
Neil heads the Peggy Spiegler Melanoma Research Foundation and is president of the Melanoma Action Coalition
My name is Tracy Callahan and I am the Founder and CEO of the Polka Dot Mama Melanoma Foundation established in 2015. I was first diagnosed with early stage melanoma at the age of 38, and by age 40, I had been diagnosed two more times. I am the Mom of two amazing boys ages 8 and 11 and they nicknamed me the “Polka Dot Mama” because of my many moles. I consider myself fortunate that my melanomas were caught early. I know that this is not the case for many.
After my third diagnosis I decided to start blogging. I knew that I wanted to use my voice to raise awareness for this often unspoken about cancer. Soon after starting my blog I began planning a Gala. I knew that I wanted it to not only benefit melanoma research, but I also wanted to stay committed to keeping it locally sourced. In addition to being a melanoma advocate, I am also a foodie! On May 1, 2016, we hosted our first annual “Taste For a Cure: Chef’s Gala Benefiting Melanoma Research.” This unique farm-to-table gala allowed us to raise $40,000 that was donated to the Melanoma Research Alliance, our charitable ally. We have been overwhelmed with the support of our local community.
In addition to raising money for research through our community efforts we have also raised over $30,000 this year for education and awareness efforts. We have been able to raise awareness both through social media and at a local level. We attend sporting events, run clubs and local events handing out free sunscreen and promoting sun healthy habits and early detection of melanoma. We also provide education to school age children all the way up to adults. Our vision is to reduce the incidence of melanoma by raising awareness, encourage prevention and improving early detection, rapid diagnosis and effective treatment of melanoma.
This fall we have several events planned including a Chili Cook Off to fund the installation of sunscreen dispensers at nine local firehouses, a virtual 5K Polka Dot Run that anyone in the world can participate in and a Martinis for Melanoma. We are also in full swing organizing our second annual Taste for a Cure that is already half sold out!
We are honored to be collaborating with the Melanoma Action Coalition and hope that together we can have a larger impact.