BraveHoods for brave kids


Elizabeth Whittington blog image

Several companies have adopted the "one for one" idea after the philanthropic success of TOMS, the shoe company that donates one pair of shoes to a child in need when you buy a pair of their espadrilles.

In honor of Childhood Cancer Awareness Month, we wanted to point out another organization that is doing good. BraveHoods may not be on the same scale as TOMS, but its one-for-one campaign of bringing comfortable clothing to kids with cancer--and their siblings--while also bringing attention to childhood cancer is worth noting.

Allison Yacht started BraveHoods in June 2013 in response to her daughter's cancer diagnosis and treatment. "One of the hardest things for her was going out and about when she was bald. We struggled for some time to try to make her more comfortable and finally found that a hoodie t-shirt worked perfectly," she says. "It is an easy and inconspicuous way for her to feel like she fit in."

Yacht realized that other kids might be having the same issues and created BraveHoods, a clothing line that featured soft clothing with inspirational messages--with hoodies. Yacht said her first goal was to help kids with pediatric cancers be more comfortable. In her experience, she noted children didn't like hat, scarves or wigs, and being bald made them feel "on display." What most kids appreciated were hoodies, which are popular even with kids without hair loss. Her second goal was to create a business model where families dealing with cancer could receive one for free.

When people purchase a BraveHood, Yacht donates one to a kid with cancer. Currently, they have given away almost 700 shirts. "We also donate to siblings because we know that they can get lost in the shuffle sometimes," she says.

Yacht has made a goal to donate 1300 shirts. "We picked this number because there are 13,000 kids diagnosed each year and we want to reach just 10 percent of these kids," she says. Currently, BraveHoods are distributed through families contacting Yacht individually, as well as through Children's Hospital Colorado, Rocky Mountain Children's Health Foundation and Bags of Fun. Soon, BraveHoods will be going to Memorial Sloan-Kettering Cancer Center, St. Jude Children's Research Hospital and the Jimmy Fund. To learn more, you can visit


Going the distance for cures: National Childhood Cancer Awareness Month


Did you know September is National Childhood Cancer Awareness Month? If not, you're not alone. Unlike many other months and the causes that they are attached to, the color gold will likely not take over store shelves in September to mark the awareness month, nor will buildings light up in the color to show their solidarity. Instead, the childhood cancer community will work extremely hard to bring National Childhood Cancer Awareness Month into the limelight, hoping to garner the attention of the general public.

It is not an understatement to say that I am thrilled for all the attention that is given to worthy causes – though pink is not my favorite color, seeing the outpouring of generosity for breast cancer awareness in October is something to marvel at. I would say something very similar for February when red is everywhere you look, not only for Valentine's Day, but also for American Heart Month. I hope that all of these causes garner the attention of the masses, but I have to ask myself, is it so wrong to find frustration in the fact that cancers affecting our children continue to fly under the radar.

When my daughter Alexandra "Alex" Scott was diagnosed with cancer prior to her first birthday, I certainly didn't know that an infant having cancer was in the realm of possibilities. I also didn't know that kids still died from cancer. Alex would battle cancer for the next eight years of her life, and would quickly outgrow the treatment protocols for her form of cancer, neuroblastoma. Imagine that, not only does your child have cancer, but the doctors are at a loss of how to treat her. We were fortunate enough to find clinical trials that would prolong Alex's life and give her a good quality of life; and while she would change the lives of so many through her lemonade stands, she would not see the day when cures would become realities.

My daughter Alex died in 2004 at the age of 8, over 10 years ago, and still, as we are in contact daily with families facing childhood cancer, there are children facing the same fate. While our Foundation, and others are working to find cures, have funded groundbreaking research, some which are leading to cures, there is still so much to be done. To me, without the support of the general public, a mass audience, childhood cancer will never garner the attention it deserves.

In this very respect, Alex's Lemonade Stand Foundation is gearing up for the month of September in which we will invite runners, walkers, cyclists and everyone to contribute their miles as we collectively aim to log one million miles throughout the month.

Why one million? Because what parent wouldn't go that distance, and then some, to find cures for their child? Also, Alex set a goal of raising $1 million in 2004, and while some people, including me, thought that was an unattainable goal, Alex did it with the help of others.

Children with cancer need your help. They need your help in bringing the cause into the spotlight, not only in the month of September, but every day of every year until cures are found.

Will you join us on our #Journey2aMillion this September? Whether you do, or not, I hope you will take the time to tell one, two or three people that September is National Childhood Cancer Awareness Month – you can be a part of finding the cures we are so desperately seeking.

To find out more about childhood cancer, or to join Alex's Million Mile – Run. Walk. Ride., visit

Jay Scott is the co-executive director of Alex's Lemonade Stand Foundation. When his daughter Alexandra "Alex" Scott decided to hold a lemonade stand to help doctors find new treatments and ultimately a cure for all childhood cancers, including her own, Jay and his wife Liz supported Alex's mission every step of the way. After cancer took Alex's life they continued Alex's legacy of hope. What started as the vision of one little girl has been embraced by a team of 100,000 volunteers.


Tears in the second row


Leslie Waltke, guest CURE blogger
I frequently give lectures. As a speaker, it can be a drag to talk right before lunch or a really serious drag to talk last at the end of a several day conference when even interested people fidget, yawn and squirm.

So I was taken aback recently when giving a late afternoon lecture to a room packed with cancer survivors. I noticed a fit, 30-something looking woman in the second row not fighting to stay alert, but fighting to hold back tears. Hmmm. The lecture was on lymphedema, not advanced disease or recurrence.

I continued on with the talk emphasizing positive points like the importance of being active, strengthening and exercise. Tears. I went on to show vibrant, engaging pictures of my breast cancer patients lifting weights, doing planks and cycling while training for a triathlon. More tears, and now her lower lip is quivering. Our eyes met and I gave her a subtle wink, non-verbally saying, "Let's talk later."

We met up after the room cleared. As she gathered herself, I racked my brain trying to come up with what I said that was so distressing. She finally spoke: "They told me I couldn't do any of that anymore."

Wow. It wasn't what I said, it's what they said. "They" being her treatment team.

Many of the lymphedema precautions spouted over the years were based on the conventional wisdom of way too long ago and on the old premise that if we tell people to do nothing, they'll be safe. Don't push, don't pull, don't lift, don't carry and you will be just fine. It turns out though, that the people that sat on the couch got just as much lymphedema as the people out playing in the park. It turns out that while some were told not to fly or lift anything over 10 pounds, other cancer survivors were safely becoming flight attendants and Olympic athletes.

Arguments went on for years over what was best. The right answers, based on research and anatomy, are now clear. The lymph system is mostly passive, which means it relies on other forces to absorb and move fluid. Those "forces" include movement, muscle contractions, increased heart rate and increased breathing rate.

Yikes! I guess telling people not to move wasn't a good call.

Though changes to the body from lymph node removal and radiation are not reversible, weakness, stiffness and decreased mobility are. Whether you have lymphedema or are at risk for it, your arm, chest and shoulder (or whatever area lymph nodes were removed) should be strong, pain-free and function normally, regardless of the type of surgery. If not, you are doing your lymphatic system a huge disservice. Studies show that rehabilitation and exercise, including lifting weights, both reduces the risk of lymphedema and decreases lymphedema symptoms. And all the walking you are doing (you are walking, right?!) is helping improve your body mass index which has also been shown to decrease lymphedema symptoms and risk.

Survivorship is already saddled with enough uncertainty to shed tears on misconceptions. Do not limp through your survivorship. Push, pull, lift, and carry. "Moving is living" holds true for your lymphatic system as well; the more the merrier, the more the healthier. Go take a walk. Your body has been through a lot, you deserve it.

Leslie J. Waltke is a physical therapist with a clinical mastery in oncology. She is a national expert, author, speaker and educator in cancer rehabilitation and is the Cancer Rehabilitation Coordinator for Aurora Health Care in Milwaukee, Wisconsin.


What we're working on


Jon Garinn blog image

The fall issue will be arriving in mailboxes soon, and our team has been hard at work to put the final touches on some compelling articles. Here's a lineup of what readers can expect:

The dilemma of DCIS
Ductal carcinoma in situ (DCIS) is a condition of the breast that bears the genetic signature of cancer but is non-invasive, meaning the cells remain in their tissue ducts and don't invade a layer known as the basement membrane. The dilemma for many patients is that DCIS is almost always survivable, even when left untreated, yet a diagnosis can produce emotional distress and the possibility of overtreatment. Should women with DCIS have a lumpectomy or mastectomy? What about radiation and hormone therapy? Charlotte Huff addresses these questions, as well as still unresolved controversies surrounding the condition, and discusses non-surgical options, such as active surveillance.

The science of biomarkers
How can biomarkers facilitate personalized medicine? While new cancer biomarkers are discovered all the time, the reality is that only a small number have advanced beyond the discovery phase to become useful in a clinical/practical sense. Why are so few biomarkers considered "reliable"? What limitations of current technology are hindering the discovery and development of new biomarkers? What does the revolution in genomics (next generation sequencing) hold for biomarkers? Maureen Salamon describes how research is helping us better use biomarkers, identify and validate new ones, and develop ways of using them in clinical trials so that promising therapies can get to patients faster.

Death with dignity
The care that patients ought to receive at the end of their lives includes physical, mental, emotional and spiritual comfort, as well as social support. Studies show that people who discuss end-of-life care with their loved ones and healthcare providers feel less stress at the end of lives, and so do their families. Yet few people have these discussions. One reason is that some people with advanced disease don't know they're dying. Kathy LaTour explores why there is so much resistance to initiating these discussions, and explains why this remains a great unmet need in ensuring a dignified death.

Window of opportunity
Prehabilitation is a fairly new concept that is quickly gaining momentum in cancer care. It involves baseline assessments of a patient's psychosocial and physical conditions prior to treatment, so that appropriate interventions and therapies can be deployed to shore up any deficiencies and optimize treatment success. Call it a boot camp for cancer treatment. For example, patients who are preparing for surgery for head and neck cancers may benefit from swallowing exercises. Or patients may boost their nutrition to fight fatigue. Jane Hill describes prehabilitation and discusses its usefulness in that window of opportunity between diagnosis and treatment.

Oncologic emergencies
Cancer and its treatment can lead to a range of potentially life-threatening conditions that require urgent action to correct them. The experience can be terrifying, especially when the patient's cancer team is far away and the patient must go to a local emergency room. Jeanne Erdmann defines an oncologic emergency and describes what patients should do if something suddenly goes wrong.

The latest on lymphedema
Although lymphedema is mostly a complication of breast cancer treatment, the condition can result from treating a number of different cancers, including head and neck, ovarian, prostate and uterine, as well as lymphoma and melanoma--anywhere that nodes are removed or damaged by radiation or surgery. The condition include swelling, tightness, pain and reduced range of motion in one arm or leg, although sometimes both arms or legs can be affected. And because lymphedema is generally considered chronic, managing it requires constant care and, often, the help of a trained specialist. Sonya Collins reveals the latest in lymphedema treatment and prevention.

Too much of a good thing
Sometimes, even the most well-intentioned caregivers can become overbearing, making the patient their "project." Don Vaughan suggests ways caregivers can avoid doing more harm than good.

But wait, there's more!
We'll also look at the link between certain food preservatives and cancer, the problems some patients are encountering when try to access cancer care using insurance plans they obtained through the Affordable Care Act's Health Insurance Marketplace, and a condition called arthralgia--a painful side effect of many cancer treatments that affects the joints.


Free yoga this month


Lena Huang blog image

September is National Yoga Month, a month dedicated to bringing awareness to the health benefits of yoga. Lots of yoga activities are scheduled this month to celebrate. One program I heard of that I wanted to share is a free week of yoga! Over 2,200 yoga studios across the country are offering a week of free yoga classes. The free classes are being coordinated by the nonprofit Yoga Health Foundation. To find a participating studio in your area and for more information, check out Yoga Health Foundation's website.

Another resource we have discussed in CURE is Yoga Bear, a nonprofit that houses free yoga videos on its website and connects cancer patients and survivors with the yoga community.

The health benefits of yoga for cancer patients and survivors are being studied more and more. Earlier this year, a couple of yoga studies were published in the Journal of Clinical Oncology. One study showed some impact of yoga on inflammation and fatigue in breast cancer survivors. The other study concluded that yoga improved quality of life for some patients undergoing radiation. While a lot is unknown about the specific connections, it's encouraging to see the practice benefitting people with cancer both physically and mentally.

In CURE, we have covered the health benefits of yoga for cancer patients and survivors in articles such as "Bending the Rules" and as "Yoga Helps Survivors with Fatigue." At ASCO this year, I talked to Dr. Karen Mustian of the University of Rochester Medical Center, who I interviewed in 2012 about yoga and fatigue. Mustian said she had just received funding for another yoga study, which she hopes will shed more light on the connections between yoga and quality of life for cancer survivors. Stay tuned for more coverage of these studies in CURE!


Childhood Cancer Awareness Month


Katherine Lagomarsino blog image

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.


New class of drug debuts with melanoma treatment approval


Elizabeth Whittington blog image

While yesterday's approval of Keytruda (pembrolizumab) is a win for the melanoma community, it also marks the first approval of a new drug class called PD-1 inhibitors, which has shown promise in treating a variety of cancers, including kidney and lung cancers.

After being granted breakthrough status last year and then priority review in May, the Food and Drug Administration gave Keytruda (also known as MK-3457) accelerated approval, which means the agency felt the drug's safety and potential effectiveness filled an unmet need to patients and pushed it through the pipeline much sooner--four months compared with the traditional 10 months of review. The approval marks the sixth new melanoma treatment since 2011.

[Learn more about breakthrough therapy, priority review, fast track status and more here ]

Keytruda, a monoclonal antibody, blocks the PD-1 pathway, which allows cancer cells to evade the immune system. The drug makes it possible for T cells to identify and attack melanoma tumors. Stay tuned to hear more about PD-1 (programmed cell death protein 1) inhibitors, as well as PD-L1 (programmed death-ligand 1) inhibitors, which works against the same cell pathway.

The approval is designated for patients with advanced melanoma or whose cancer cannot be surgically removed and no longer responds to other treatments, including Yervoy (ipilumumab), another type of immunotherapy. The approval was based on two trials that showed tumor shrinkage that lasted from 1 to 8 months and that the drug was safe.

In the phase 1 study, the drug appeared to work in patients with newly diagnosed melanoma as well as in those who had been heavily pretreated. Common side effects included fatigue, cough and nausea; reports of immune-related side effects were rare. When the data was originally presented at the American Society of Clinical Oncology's annual meeting in early June, researchers were very complimentary of the lack of severe side effects seen – only 4 percent of participants in the clinical study discontinued treatment because of side effects, a result many researchers hadn't seen before in a metastatic patient population. (You can read more about melanoma advancements in CURE's ASCO 2014 coverage here.)

Of course, the approval is contingent on further testing. Because it was based on tumor responsiveness in a phase 1 trial, follow-up studies will need to be completed to see if there is an improvement in overall survival or other benefit.

Keytruda is now one of several treatments that boosts the immune system against cancer. Additional studies are testing various combinations of these drugs, hoping that targeting different pathways may boost survival.

"The news of FDA's first approval of an anti-PD-1 drug is extremely exciting and shows just how far the field has come in the last few years," says Debra Black, co-founder of the Melanoma Research Alliance, in a statement released by the organization.

Update: Previous version stated that breakthrough status was granted in February. Pembrolizumab was granted breakthrough status by the FDA in April 2013.


LEAPing into lymphoma advocacy


Robin Levy

When someone is facing a lymphoma diagnosis the last thing they think about is public policy. However, public policy has the potential to impact the health, treatment and long-term survivorship of lymphoma patients just as much as scientific discovery.

Today, the individuals who develop these policies (elected officials, policymakers and regulators) directly impact the medical treatments patients access, the nation's investment in innovative research, and even the way in which health insurers pay for cancer care. Unfortunately, the majority of these decision makers know little about lymphoma. That is why it is critical for those people affected by lymphoma to become advocates and take an active role in the policy making process.

With that in mind, the Lymphoma Research Foundation (LRF) established the Lymphoma Education and Advocacy Partners (LEAP) program. LEAP was created in an effort to coalesce the community around those policy issues which have the greatest potential impact on the lymphoma community. LRF is excited to be joined by our founding member organizations: the Cutaneous Lymphoma Foundation (CLF), the International Waldenstrom's Macroglobulinemia Foundation (IWMF), the T-cell Leukemia Lymphoma Foundation (TCLLF) and The Double Hit Lymphoma Foundation (TDHLF).

LEAP will explore both legislative and regulatory initiatives and focus on those issues of highest priority to people with lymphoma, including access to quality cancer care, treatment cost, investment in innovation and lymphoma clinical trials.

Through quarterly LEAP webinars, LRF will educate participants about these issues and prepare them to communicate with policymakers. These webinars will include presentations from experts in the field and will represent all points of view, including, scientific, legislative, and patient perspectives. At the conclusion of each webinar, participants will be given action items, such as email advocacy alerts that they can easily send to their Congressional Leaders.

LEAP's fundamental goal is to bring together patient advocacy organizations with similar missions to educate and advocate on behalf of the lymphoma community. We believe that through the collective voice of patients, survivors, caregivers and medical professionals, that legislation and policies can be developed so as to positively impact the lives of Americans living with a lymphoma diagnosis.

To learn more about LEAP please visit

Robin Roland Levy is the Director of Public Policy and Advocacy at the Lymphoma Research Foundation. In this capacity, she leads the Foundation's legislative and policy initiatives before the U.S. Congress and federal agencies, and coordinates the activity of the organization's advocate community.


Could cholesterol-lowering drugs work against colorectal cancer?


Elizabeth Whittington blog image

A recent study published in the Journal of Clinical Oncology found that statins, drugs used to lower cholesterol levels by blocking a key enzyme, improved survival in patients with non-metastatic colorectal cancer. The class of drugs is one of the most widely used in the country, with nearly half of Americans aged 65 and older taking them. The medications have a pretty good safety profile and are relatively inexpensive, but doctors aren't yet ready to begin prescribing the drug to patients with colorectal cancer.

The study looked at a group of more than 7,500 participants based in England with newly diagnosed stage 1-3 colorectal cancer. Researchers found that statin use, when taken for at least a year after the initial cancer diagnosis, was associated with longer rates of survival.

Earlier studies may explain why statins have an effect on colorectal cancer, including the drug's effect on cell apoptosis ("cell suicide"), inhibiting cell growth and angiogenesis (the process of supplying blood and nutrients to a tumor) and enhancing the immune response--processes that would impact cancer cells. The same cellular process by which statins block cholesterol production also may impact certain processes used in producing cancer cells and their growth. It could be that statins interfere with the cancer's ability to metastasize or possibly enhance the effect of chemotherapy.

Of course, more follow-up and randomized studies will need to happen before statin's effect on cancer can be confirmed and it makes its way into clinical practice. As with any treatment, risks and benefits will need to be weighed for each individual patient before prescribing, but it does look promising.

Thomas Cartwright, a colorectal cancer specialist with Florida Cancer Affiliates and a member of CURE's advisory board, says that while these latest study results are interesting, he doesn't think any physician would prescribe statins to a patient with colon cancer patient based on this single study.

"There are many potential confounding factors and limitations in a study like this," he says. "Statins can have side effects, as well, and a similar study showed statins may increase the risk of diabetes."


When the patient becomes a caregiver


suzanne lindley blog image

I'm typing this blog from the hospital bed next to Ronnie's in the wee hours of the morning. This time, I'm not the patient.

There are no IVs, oxygen or tubes hooked to me. Instead, they are connected to the person who has been my anchor through good and bad. The room is dark with the exception of a line of light peeking through the door. I capitalize on this and watch the steady drip of antibiotics fall through the tubing and slowly into his arm. Just as I have prayed so many times that chemo will shrink my tumors, I am now lifting similar prayers that this powerful drug will cure his infection. I find comfort in the cadence of his breath and occasional snore, then hear a train whistle in the distance, and think of the journey we have taken to get to this spot.

Two short weeks ago, we were in the middle of a fantabulous break from chemo and for the first part of summer break enjoyed a relaxed pace. These school-free months for Chloe have also been like "cancer-free" months for me. We have grabbed every second and have celebrated the gift of NOW with as much memorable fun as we could feasibly pack into a day.

There have been trips to the water park, fishing at the lake, bike rides, SuperRide drill competition, a Wade Hayes performance, a few Clay Thrash concerts, the zoo, Six Flags and even The Grand Ole Opry. There have been art classes, crafts and bedtime stories; hopscotch and chocolate chip cookies. Walks to the lake let us feed the ducks and watch the sun set, and I find myself believing that this is what normal feels like. We've had a couple of birthdays, another wedding anniversary, time with Katie and Karlie despite their busy adult lives, and are soon going to be walking Chloe into first grade. Life flies by sometimes simply; slowly and deliberately, and at other times with much more velocity and speed.

The last few weeks have made up for the easy glide into the beginning of summer with a tidal wave of Murphy's Law.

Ronnie punctured his finger. Though it seemed straightforward in the beginning, not all is what it seems. My mom had cataract surgery resulting in high pressures that took time to resolve. Then my dad had a stroke, and my mom had a second cataract surgery.

The pace quickened.

Then Ronnie's simple puncture didn't respond to the first round of antibiotics. Steroids didn't touch it and a second round of newer, stronger antibiotics didn't work either. Faster we go. Orthopedic surgeon visit. MRI. Surgery is scheduled and fast is now joined by furious as the infection outsmarts the bones in his finger. The infection becomes sneaky. And like waiting for the slow rumble of the train as it passes by the hospital window, we must patiently wait for the antibiotics to work and the infection to leave his body.

Traveling from patient to caregiver, I suddenly understand the many challenges, angst, frustrations and fears - as well as the total commitment and love - of those who have cheered and cared for me throughout this 15-year journey. My hand finds Ronnie's. His eyes open slightly and I hug him with all my might. Life is fiercely fragile.

Hug often....hug tight!

Suzanne Lindley has been living with metastatic colorectal cancer since 1998. She is the founder of YES! Beat Liver Tumors, an organization for individuals living with metastatic liver tumors, and an advocate for Fight Colorectal Cancer.


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