Advocating for your loved one at the end of life


Kathy LaTour blog image

Five years to the week after I was diagnosed with breast cancer, my mother was diagnosed. She had known about the lump in her breast for a while, but my brother was going through some difficult health issues at the time, so she put off her own.

Either that or she suspected what it was and didn't want to know.

My mom was 72 when they found the mass, and mass it was. Measuring the size of an egg, it hadn't shown up on the mammography she had received because it was against the chest wall. Mammography is supposed to find these masses too, but... I don't know why they missed it. She got her mammograms at a military hospital as my dad was retired Navy.

But no matter whether it was on the mammogram, she could feel it, and she should have told them to stick a biopsy needle in it way before she told me about it. Of course, I scolded her. I was doing cancer 24/7 by then, speaking and educating women about breast cancer, but my mom ignored her own.

She just apologized and said she didn't think it was anything. I made an appointment with my surgeon, and she immediately scheduled her for a biopsy. My sister and I accompanied her to the day surgery and, knowing it was going to take a while, went to lunch.

My sister, not having done the cancer march, was sure it was nothing. I think there is a sense of protection when one person in the family gets cancer. The others think, "Well, my family has done their part, and now I don't have to worry." Wrong.

When we returned to the surgery center, I knew the good signs and the bad. When we walked around the corner, all the recliners were filled with people recovering from other biopsies. Mom was not there. I froze. That meant she was in one of the cubbies, small private rooms where bad news allows some privacy.

My sister thought it was sweet that she got a room and everyone else was out in the big area. When we walked into the space where mom was recovering, my surgeon was with her, and mom was crying. I stood for a second, and it was like her life and death flashed before me.

When she apologized for not taking the lump more seriously, I knew it was malignant. My surgeon said she would have the full pathology back in a week, so we took mom home and began planning. My mother called me the executive director of her cancer.

The first step was to move my dad, suffering from late-stage Parkinson's disease, to my sister's house until we could find a good nursing home. He needed the kind of care that she, with three little ones, could not provide for very long.

Then we met with my surgeon, who gave us the whole story. Mom's cancer was already in her lungs, the reason she had been so winded lately. Mom was hardly listening, knowing that I would translate everything that was being said later.

What the news told me was that my mother was dying. It was 1991, and we didn't have any of the life-prolonging drugs now available. I also knew that caring for my father had taken its toll on her, and I questioned her desire to live.

Three rounds of chemotherapy didn't help, and, if anything, hastened her demise. Her immune system was wiped out and the cancer galloped. She was diagnosed in November and by March,1992, it was clear to me she didn't have long to live. It was also time for us to have a conversation about what she wanted.

My oncologist, now my mother's oncologist, kept offering the next option, and I knew that the likelihood of them working was growing dim.

When Mom and I talked about the next option after number three didn't work, I said, "Mom, you know you have the option to do nothing and enjoy the time you have left with a better quality of life."

She immediately said that was what she wanted, telling me she was afraid to bring it up for fear she would be disappointing all of us by not fighting.

My mom was a Navy wife, hauling four children from base to base for 26 years while my dad served his time. I knew she was a fighter. I also knew she was tired.

What that discussion provided was time for us to talk about what she wanted. We planned her funeral, and we made sure all the paperwork had been taken care of. Now I know there was so much more we could have done that we didn't in terms of discussing what she wanted and how she felt about her life. I didn't want to accept that it was going to happen as quickly as it did.

For the next month she did nothing, and because she tended to be stoic, she lived with a lot of pain. She was staying with my sister, who had moved my dad to my brother's house. Dad was out of it, and I don't remember if they ever even had a conversation about mom's health. His dementia had increased and he often went days without speaking to anyone.

What I knew was that my mom had a strong faith. It had grown since the death of my brother, a Navy pilot killed when his helicopter crashed during flight training in 1972. What I didn't know was how to help with the pain.

When new spots showed up on her spine, I knew the pain was bad and palliative care hardly existed then. Little was done to help those in pain. Not until my sister called me in mid-May to tell me Mom's pain was really bad, did I know just how stoic she had been. I told my sister to meet me at the emergency room of the hospital.

When I got there, Mom was in a wheelchair, and it was clear she was in serious pain. I told her this was not the time to be stoic, and that we had to let them know this was serious. Her moans brought me to my knees, but it sure got her in a room faster. When the first ER doc walked in, I said, "Get her out of pain, NOW." Had I not dealt with the healthcare system for my own cancer, I never would have had the guts to be so demanding. Bu it worked.

I knew she needed morphine, and when the nurse came in and tried to start an IV in her arm, I told her through clenched teeth that mom had a port. The nurse said no one there knew how to access a port, and I replied, "Then go find someone."

A nurse from the pediatric floor was there in a matter of minutes and Mom got the morphine that would immediately take away the pain. The relief showed on her face, and I kicked myself for not doing something sooner about her pain. But why hadn't her oncologist?

Our oncologist was out of the city, but I insisted they admit her for pain control. That was Wednesday. On Thursday they moved her to the hospice floor, and I knew she would probably not be going home. But she was blessedly out of pain, and when she was lucid we could talk and joke. We called her brother in California and told him to come now if he wanted to say goodbye. He didn't make it.

On Friday when our oncologist came by, he said he wanted to start radiation on Monday to help with the pain. I just stared at him, thinking, no way. And at that moment it became clear to me how little the docs knew about pain at that time.

My sister and brother immediately looked to me when he left, but luckily the hospice nurse spoke up and said Mom would not make it to Monday. She explained the signs to us of swelling that indicated her kidneys were shutting down. Both my siblings wanted to believe the doctor, but I told them to believe the nurse, since doctors seldom saw the end of life.

We sang to her and talked to her even when her eyes were closed. I knew hearing was the last to go and we wanted her to know we were with her.

My brother was with her when she died. I had gone home for the first time in two days and was sleeping when I suddenly sat straight up in bed. I know now it was her spirit coming to say goodbye. When the phone rang moments later, I picked it up and heard my brother's voice. "She's gone."

I look back now and know that I should have demanded pain support much earlier than the week she died. How could I let her be in that much pain? Why didn't she tell us sooner?

They are all questions that will haunt me.

Today, you have the chance to make it better for those you love. Demand palliative care and demand it early. Pain is not acceptable and it can be controlled to give people a good quality of life.


Sweet sixteen like no other


suzanne lindley blog image

Do you remember that sweet sixteen feeling? The whole world seemed to be at your grasp. Excitement filled the air with the anticipation of that first date, learning to drive, going to the prom, and even getting a job.

Sixteen years. 192 months. 5,844 days. That is the amount of time that has passed since I heard three of the most terrifying words of my life, "You have cancer."

Thankfully, the landscape of cancer has changed in these years. Treatment has transformed. Advances in personalized medicine, chemo and immunotherapy, radiation, targeted therapies like SIR-Spheres, RFA, SBRT and CyberKnife among others, surgery and clinical trials continue to bring me, and others like me who are living with advanced cancer, one step closer to a cure. Multidisciplinary treatment and a team approach are the norm and not the exception. There is great reason to hope.

Patients have changed, too. We are more informed, inquisitive, pro-active and vocal. Gone are the days when the words colon and rectum had to be uttered in a hushed whisper behind closed doors. Awareness is all around thanks to the elbow grease, creativity, and reach of some great organizations and advocates. We are no longer in the dark. These days, we want to know about our diagnosis. We ask questions, share with each other, and support one another. Less and less are we alone.

Because of cancer, my family met friends that without cancer, we would have never met. Together, we forged our way through the hurdles of cancer, embracing each other through fragile moments, tortuous losses, and inspiring encounters. We experienced more amazing memories than many ever dream to see. We found significance in the often neglected, yet miraculous gift of now. A new normal emerged.

We endured. Good fortune followed us through the nightmare of colon cancer; showing us that strength could appear when situations were bleak. Our moments together and the memories we made were cherished. The counting of years in spite of cancer savored.

We have savored sixteen years in the midst of cancer to be exact. There is nothing like that "sweet sixteen" feeling. It's a once in a lifetime celebration that, thankfully, I am celebrating again today. It is the sixteenth anniversary of my diagnosis with cancer. Once again, I feel that feeling. The world is at my grasp and it will be a year of great anticipation, celebration, and work.

Help me celebrate! Take just 16 seconds of your day today. If you know someone affected by cancer – or perhaps someone who just needs some cheer –a message on Facebook, tweet, or text will do. Share a positive quote. Send a picture. Let that person know that you care. Remind your friends to have a colonoscopy. You can brighten a day. You may even save a life.

There are 16 candles on my cake and I'm celebrating sweet sixteen like never before! Celebrate with me today! Just 16 seconds...

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.


A journey from neuroblastoma to ambassador


Lauren Bendesky, guest CURE blogger
In May of 2012, I was a typical 14-year old kid; competitively dancing, playing the viola, involving myself in numerous educational extracurricular activities, and was ranked in the top ten in my high school class. However, my life was forever changed after a mass, weighing nearly 16 pounds, was discovered in my abdomen.

The doctors diagnosed me with stage 4 neuroblastoma, an aggressive solid tumor arising in immature nerve cells, which had already spread throughout my bone marrow. At that moment, I felt anxious and a sense of doom, like my world was collapsing before my eyes. I was soon informed that the current survival rate for stage 4 neuroblastoma is only 30 to 50 percent, meaning that up to 70 percent of children diagnosed with this cancer do not survive. Even after being given statistics that weren't in my favor, I decided that day to stay strong and never give up. I have become a fighter, continuing to overcome obstacles and inspire others in similar situations.

Since my initial surgery to remove the tumor, I have undergone six rounds of induction chemotherapy, a stem cell harvest, high-dose chemotherapy, a stem cell transplant, radiation and immunotherapy. I have been one of the lucky ones and have been no evidence of disease since my second round of chemotherapy. I am also now partaking in a clinical study to maintain my remission status. While undergoing treatment, I spent nearly my entire sophomore year of high school in the hospital, in complete isolation, and in the pediatric intensive care unit.

While in treatment, I met other cancer warriors and parents who had children that were not as lucky as I was. These people emphasized the significance of being grateful for the life one is afforded and to take advantage of all opportunities placed in one's path. People came and went, some walking out of the hospital after learning that they had beat this beast called cancer. Others were put on hospice and given days to live.

After meeting these inspirational warriors and learning that only 4 percent of the national cancer budget is allocated to pediatric cancer research, I took the initiative and established my own non-profit organization. I created a foundation to increase awareness regarding the commonality of pediatric cancer and to assist adolescents while undergoing treatment.

I started a blog to share my experiences with the desire to foster courage and hope in others. Chronicling my journey allowed me to express my inner-most thoughts and feelings, which otherwise I may not have verbally expressed. The responses of those I did not even know influenced my life in a positive manner and encouraged me to continue fighting and maintain an optimistic view. My blog was originally created with the intention of motivating others, but I was actually the one being uplifted.

In August of 2013, I was contacted by the St. Baldrick's Foundation, the largest funder of pediatric cancer research grants besides the United States government, to serve as one of its five 2014 St. Baldrick's Ambassadors. The organization hosts thousands of head-shaving events around the nation to stand in solidarity with pediatric cancer warriors and to raise money to fund the best childhood cancer research. I accepted the offer and now attend events around south Florida, serving as a guest speaker and a face of childhood cancer. I have learned about my true self through this experience and I am now able to display my inner passion to serve as an advocate for pediatric cancer.

In the future I aspire to become a pediatric oncologist and researcher, giving back to the community that saved my life. This past summer I had the opportunity to work as an intern in a pediatric oncology laboratory at MD Anderson. Working alongside professionals in the field, I learned that an immense amount of knowledge and dedication goes into creating new treatments. I hope one day that I will be able to create innovative treatments and give innocent children a fighting chance. My life mission is to improve the fact that 46 children are diagnosed with cancer and seven will succumb to the disease every day.

Lauren Bendesky, 16, from Coral Springs, Fla., was diagnosed with stage 4 neuroblastoma when she was 14 years old. Lauren has finished treatment and is looking ahead to college with plans to study biology and become a pediatric oncologist.


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 delivering 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 of 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.


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