Childhood Cancer Awareness Month


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September is Childhood Cancer Awareness Month. Aside from wearing a gold ribbon, there are myriad ways to get involved that range from sipping tea, noshing on gourmet grub or going for a stroll. Following is a roundup of just a handful of the many, many activities going on around the country this month that are bringing awareness to the disease.


Teddy Bear Tea at the St. Regis: The St. Regis Hotel in Atlanta is hosting a Teddy Bear Tea for adults and children every day from Sept. 1-Sept. 30. Five percent of afternoon tea sales will be donated to Cure Childhood Cancer.


CureSearch Walk for Children's Cancer: On September 6 at Soldier Field stadium, CureSearch holds a walk in honor of Chicago-area children who have been touched by cancer.

Los Angeles

L.A. Loves Alex's Lemonade: On September 20, the best chefs and mixologists in the country gather to offer tasty bites in honor of a good cause. Ticket sale proceeds go to Alex's Lemonade Stand, a nonprofit dedicated to raising money and awareness to defeat childhood cancer.


Four Seasons Parkway Run & Walk: The Children's Hospital of Philadelphia (CHOP) hosts its largest fundraiser of the year with a 5K run and a 2K walk. The event supports the hospital's cancer research and survivorship programs.

Washington D.C.

CureFest for Childhood Cancer: On September 21, the National Mall will host CureFest, a fundraiser for childhood cancer that kicks off with a walk followed by a festival that includes live music, guest speakers and activities for people of all ages.


Immunotherapy for the melanoma patient with an autoimmune disease


Katherine Lagomarsino blog image

In the past few years, advances in melanoma treatment have generated a flurry of activity, and much of that activity has focused on immunotherapy. From vaccines to checkpoint inhibitors to T-cell therapy, these strategies involve harnessing the body's immune system to kill cancer cells, and it has been used in a variety of other cancers, from lung to bladder to kidney cancer. But is immunotherapy appropriate for the patient with an autoimmune disease?

Recently, two melanoma researchers at MD Anderson Cancer Center in Houston addressed that point during an OMEDLive webinar hosted by the Albert Einstein College of Medicine at Yeshiva University in New York.

"We often have these kinds of patients that come in and have other diseases, such as autoimmune diseases, where the immune system is already attacking the body," said Patrick Hwu, chair and professor at MD Anderson's Department of Melanoma Medical Oncology, who co-hosted the webinar with Sapna Patel, an assistant professor. These diseases include, among others, psoriatic arthritis and ulcerative pancolitis, both of which might require medications that suppress the immune system. In some cases, either immunotherapy is ineffective because of the immune-suppressing drugs, or it can exacerbate a condition, like in the case of ulcerative pancolitis.

"The issue is whether you would withhold immunotherapy from somebody who has an essentially life-threatening melanoma simply because they have an underlying autoimmune disease," explained Patel. "However, it is also the idea that if you're stimulating the immune system, and someone is on therapy that may be blocking the immune system, how effective will that be, or are you setting them up for toxicity?" In addition, transplant patients on anti-rejection medication might not be good candidates for immunotherapy, as those therapies might enhance the possibility of organ rejection.

With this in mind, what are the options for melanoma patients who must take immune-suppressing drugs?

"You first go looking for actionable mutations in that patient," explained Patel. "Maybe there is a way to treat them outside of using immunotherapy." Some targeted therapies, such as BRAF inhibitors and MEK inhibitors, are showing promise in treating melanomas with certain mutations. She added that chemotherapy might still be an option as well.

"But also you have to have a really important discussion with the patient if they have a very aggressive melanoma that could be terminal if it's untreated and unchecked, and yet they have this underlying autoimmune disease," said Patel, regarding determining the risks and benefits of immunotherapy. "If your back is up against the wall, you may have to bite the bullet."

For the full presentation, click here.


Sun Protection: Getting the Point Across to the Young


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Our family is heading to Mexico next month and I'm already nervous about protecting my blond-haired, blue-eyed, fair-skinned one-year-old daughter from the brutal Mexican sun. To a young child's tender skin, a severe sunburn can have lasting effects. According the Skin Cancer Foundation, a single blistering sunburn in childhood more than doubles a person's risk of developing melanoma later in life. With melanoma in my family (my father and his cousin both died from the disease), keeping her protected now is crucial for her future health.

Though a bit labor intensive, sun safety is relatively straightforward for a toddler. Her daddy and I will slather her with SPF, dress her in a sun-proof bathing suit, top her off with a wide-brimmed hat and keep her in the shade when the sun is most intense, between the hours of 10 am and 4 pm. (The Skin Cancer Foundation has more good tips here for protecting small children from the sun's rays.)

It's later on in her life, when she's an independent, strong-willed teenager under the influenced of tanning obsessed peers, that I worry about. But I've already decided that I will resort to scare tactics, and fortunately, there are plenty of public service announcements (PSAs) out there that will help me get the point across that too much sun, like smoking, poor eating habits and too much alcohol, can be deadly.

The American Academy of Dermatology has released several ominous PSAs on its website. The most recent one shows a young woman in a bikini settling in for a good soak in the sun. She's unfurling a towel on a bed of sand, sipping a bottle of water and putting on sunglasses. It's a vision of relaxation, until the camera pulls away and you realize the girl is not on a beach, but enclosed inside an hourglass. Far below her, the sand is slowly slipping away. Time is running out for this sun worshipper.

There are more unsettling PSAs, like this one entitled "Dear 16-Year-Old Me," which shows young melanoma survivors revealing their scars, as well as family members remembering their loved ones who died far too young with the disease. It might seem extreme to some to subject their teenager to these types of videos, but for those who have had any experience with melanoma--an extreme form of skin cancer that is one of the most common kinds of cancers in young adults--it just might be life-saving.

For backup when discussing sun protection with your teen, here are a few good resources:

Skin Cancer Foundation

American Academy of Dermatology

American Cancer Society


Progress in melanoma that is bittersweet


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Today is Melanoma Monday and what better way to mark this day of understanding and advocacy about the deadliest form of skin cancer than by celebrating recent progress made in its treatment. Much of that headway revolves around immunotherapy drugs, a class of drugs that provokes the body into attacking cancer cells.

Yervoy (ipilimumab ) is one such drug that broke out onto the scene in 2011, a full five years after my father passed away from melanoma. The drug was the first to extend survival in advanced melanoma patients. While my father did in fact "hitchhike" from one clinical trial to the next, which bought him six very active years of life after his melanoma metastasized, sadly, he was not able to take full advantage of this new generation of treatments, some of which are paving the way, as some researchers are saying, to a clinical cure.

Anti-PD1 and anti-PDL1 are a new generation of immunotherapy drugs being tested alone and in combination with Yervoy, which, despite all of the excitement surrounding it, extends survival by a mere four months. Others, such as nivolumab, are being studied in late-stage trials, while lambrolizumab and MPDL3280A are being tested in early-stage trials. The hope is that some potent cocktail of these immunotherapy drugs will be the winning combination for some or all patients. What an unbelievable moment in science that will be. Until then, here's to those who are bravely hitchhiking their way through melanoma with hope and fortitude...and to those whose journeys have ended.

For more information on Melanoma Monday, visit the American Academy of Dermatology's website. And stay tuned for more exciting news in melanoma at this year's American Society of Clinical Oncology (ASCO) meeting at the end of this month.


Today is Melanoma Monday


Katherine Lagomarsino blog image
It's not too late! There is still time to wear orange today to both raise awareness about skin cancer and also encourage early detection through self-exam. The American Academy of Dermatology (AAD) created Melanoma Monday to help get the word out about not only melanoma, but all skin cancers.

Following are a few stats about skin cancer from the AAD: It's the most common cancer in the U.S.; it is estimated that one in five people will receive a diagnosis of skin cancer in their lifetime; and melanoma is the most common type of cancer in people age 25 to 29.

For their SPOT Orange campaign, the AAD is asking the public to submit photos of friends, family, co-workers or even pets wearing orange in honor of Melanoma Monday. You can upload the photos here. So hurry up and get your orange on!


A Podcast with Otis Brawley


Recently I reviewed Otis Brawley's provocative book, How We Do Harm: A Doctor Breaks Rank About Being Sick in America. In the book, Brawley, the chief medical and scientific officer of the American Cancer Society (and a member of CURE's scientific advisory board), takes issue with how the American healthcare system often provides far too much or far too little healthcare, and reveals how neither is good when it comes to treating cancer. You can read the full review here.

Last Sunday, Joe and Terry Graedon of The People's Pharmacy interviewed Brawley about his book as well as his thoughts on various cancer screening methods, including the PSA test for prostate cancer and the spiral CT scans for lung cancer. The often skeptical Brawley digs deeper into these tests and provides context for the statistics, as well as his own advice on what patients should do when confronted with what has become a very confusing topic.

To be sure, this hour-long podcast entitled The Underbelly of Healthcare (available here) is worth a listen and is free for four weeks following its August 25 release. After that, a digital download is available for $2.99.


Lower survival for young adult ALL patients


Adolescents and young adults (AYAs) with high-risk acute lymphoblastic leukemia (ALL) have it worse than younger patients when it comes to rates of relapse, drug toxicity and overall survival. While previous data has suggested this, there has been no large study to make that comparison between these two patient populations receiving the same treatment until now. A major phase 3 trial, presented yesterday at the American Society of Clinical Oncology's annual conference, compared the outcomes of 501 AYA patients, diagnosed between the ages of 16 and 30, to 2,070 younger patients, diagnosed between the ages of 1 and 15. All had a diagnosis of high-risk B-precursor ALL, a form of leukemia that carries a higher risk of treatment failure. All were on the same randomized trial, the Children's Oncology Group Study ALL0232, testing four treatment regimens.

By analyzing the data from that trial, researchers found five-year event-free survival was 68 percent in the AYA population compared to 80.9 percent in patients younger than 16. Overall survival was 79.8 percent for AYAs and 88.4 in younger patients. Dr. Eric Larsen, medical director of the Maine Children's Cancer Program and study chair of ALL0232, cited potential reasons for these poorer outcomes among young adult populations.

"Older patients tend to not be able to tolerate full-dose chemotherapy," said Dr. Larsen, "so they have compromised therapy." He also said both disease biology and socioeconomic factors could come into play. Larsen said young adults tend to be less compliant with oral chemotherapy maintenance regimens. The study found AYA patients had a 21.3 percent rate of relapse as compared to 13.4 percent for younger patients.


The molecular era of cancer


Yesterday was Day 1 at the American Society of Clinical Oncology's annual conference in Chicago and among the many things I'm excited to learn more about is what current ASCO president Dr. Michael Link described in the kickoff press conference as the molecular era of cancer. I'm still new to covering the cancer space, and this is my first time at ASCO, so my goal is to find out what these sorts of intriguing phrases mean to cancer patients.

In the next decade, explained Dr. Link, doctors and researchers won't be so concerned about cancer in terms of where it first developed in the body, be it the lung, brain or breast, but they'll be more focused on each tumor's unique molecular makeup. Certain genetic mutations within tumors spur cancer on and they will be creating, more and more, therapies that target those specific abnormalities. "In effect, every patient has his or her own rare form of cancer," explained Dr. Link, a leader in the field of pediatric oncology. The tricky part is finding which patient has what genetic mutation and then getting them the right treatment.

One study Dr. Link mentioned that tested this customized form of medicine is a Phase I trial in which the oral targeted agent Xalkori (crizotinib) was used to treat three rare and aggressive pediatric cancers: neuroblastoma, anaplastic large cell lymphoma (ALCL) and inflammatory myofibroblastic tumors (IMTs). Most of the 70 children in this study, conducted by the Children's Oncology Group, had already received every available therapy before they were given crizotinib.

Crizotinib works by targeting genetic abnormalities in the anaplastic lymphoma kinase (ALK) gene. ALK mutations, which can drive tumor growth, occur in 80 to 95 percent of all ALCL cases, half of all IMTs, and 10 to 15 percent of all aggressive neuroblastomas. Response rates to crizotinib seemed to correspond to these percentages. Seven out of eight children, or 88 percent, with ALCL on the study had a complete response to the therapy. The majority of the patients with IMTs, which previously had no other effective alternatives, had tumor shrinkage or a regression. For those with aggressive neuroblastoma, two out of 27 had a complete response and eight experienced stable disease, meaning the cancer had not grown.

Patients on the study were, when possible, tested for having this ALK mutation, although it was not a requirement. But it is still thought that perhaps whether or not these patients have this genetic mutation could indicate whether or not crizotinib will be effective. This is, of course, a Phase 1 study, which examines such things as toxicity (crizotinib was well-tolerated by the patients), and more studies need to be performed. But, as Dr. Link explained, this is the sort of studies we'll be seeing in the coming decade.

"Are we ready for the molecular era?" asked Dr. Link. "Not yet. Clinical trials haven't kept pace with the molecular era." But the belief is that trials like this Phase 1 study will become the new norm.


Breaking news on fertility drugs and childhood cancer?


I cover CURE's childhood cancer beat. It's a topic I've been interested in since volunteering in the local children's hospital playrooms, some of which are located in the cancer wing . I also happen to know and adore numerous children who are a result of fertility treatments. So when news items began popping up recently stating that children born as a result of fertility drugs were twice as likely to develop acute lymphoblastic leukemia (ALL), the most common form of childhood cancer, I tuned in for reasons both personal and professional.

After initially reading various news organizations' interpretations of that study, and not the actual study itself, it was impossible to determine how serious a threat these fertility drugs really were, which fertility drugs were potentially problematic or if any were even harmful at all. Some media outlets went for the attention-grabbing headlines: "Fertility Drugs More than Double Childhood Cancer Risk, Scientists Say"; "Common IVF Fertility Drugs 'Increase Childhood Leukemia Risk'"; "IVF drugs linked to childhood cancer." It makes you wonder how many parents of children conceived with the help of fertility drugs panicked when they saw those headlines.

The actual study, however, is far less conclusive than those headlines suggest. True, French researchers found an association between ovulation-stimulating drugs and childhood cancer, but there was also an association between childhood cancer and couples who took longer than a year to conceive naturally. And, to be clear, association is not synonymous with causation. And the term link cannot be interchanged with cause. The lead researcher admitted further study was needed.

In other words, fertility drugs may or may not increase the risk of childhood cancer. This is not as bold of a statement, but certainly a more accurate one.

Studies that are not quite ready for prime-time come out every day, and sometimes the media picks up them. Indeed, some studies are more interesting than others, and what a thrill as a journalist to report on brand new findings. But if those findings aren't given proper context, the potential for causing unnecessary stress and worry among an audience that probably already has its fair share of both is high. Perhaps we as journalists need to be more generous with our use of the word "may" in our headlines.


Bald Barbie: 2013


Following an intense Facebook campaign encouraging Mattel to produce a Barbie specifically for young female patients suffering from hair loss, the toy company plans to unveil a bald Barbie, complete with scarves, wigs, hats and other accessories. The group of women behind the campaign, which now has more than 150,000 "likes," either had children suffering, or were themselves experiencing, baldness because of cancer treatments or other illnesses. The Barbie is designed to help young girls cope with the side effects of chemotherapy or alopecia areata, an autoimmune disease, both of which can cause hair to fall out. But don't expect to see these bold, bald beauties on store shelves. Mattel, working through the Children's Hospital Association, the Children's Cancer Foundation and the National Alopecia Areata Foundation, will be giving them directly to young patients suffering from hair loss. Kudos to the ladies behind the bald Barbie movement and to Mattel for responding to the needs of young cancer patients.

If you could suggest any doll or toy (iconic or otherwise) to be treated in a similar manner, what would it be?

Bald Barbie


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