Childhood Cancer

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Choroid Plexus Tumors

Choroid plexus tumors (CPT) are rare tumors that begin in the ventricles of brain. Often, CPTs can block the flow of cerebrospinal fluid within the ventricles. Choroid plexus tumors can be benign or malignant. Subtypes of CPTs include: choroid plexus papilloma (CPP), atypical choroid plexus papilloma and choroid plexus carcinoma.

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Latest Choroid Plexus Tumors blog posts

December 14, 2018

by Trish Adkins

Children with certain types of hard-to-treat childhood cancers just got another huge dose of hope. Last week, the U.S. Food and Drug Administration (FDA) granted accelerated approval to a drug called Vitrakvi (also known as larotrectinib), making the treatment available to children with cancers that are NTRK fusion-positive. 

NTRK is a gene that is present in certain types of pediatric cancers, as well as some adult cancers.

ALSF funded-researcher Dr. Steven DuBois at Dana-Farber Cancer Institute played a critical role in the research that led to the breakthrough. In a clinical trial led by Dr. DuBois over 75-percent of patients treated with larotrectinib responded positively to the drug and their tumors either shrunk or disappeared. 

“Our goal is to make discoveries and disseminate these discoveries, especially when there is a therapy with such a high response rate and tolerability,” said Dr. DuBois.

The trial was held at multiple sites, including Dana-Farber Cancer Institute, which ALSF funds through its Center of Excellence (COE) program. Dr. DuBois, together with Dr. Wendy London, managed the ALSF grant funds to help sustain the infrastructure of the Developmental Therapeutics Center, collaborate with other institutions, train physician scholars in drug development and build a pediatric oncology developmental therapeutics program. The center actively participates in over 100 oncology studies at any given time.

Each of the patients in the larotrectinib trial had cancers that had the NTRK gene present. NTRK occurs when genes fuse together abnormally, resulting in the growth of abnormal cells, which become cancer. While NTRK is rare, it does occur across a range of cancer types including infantile fibrosarcoma, soft-tissue sarcoma and types of colon, lung and thyroid cancers. 

Prior to the FDA approval of larotrectinib, children with this type of cancer had no effective options for treatment.

This is the second time the FDA has approved a cancer treatment based on a common genetic feature across different types of cancer rather than the specific tumor type. The approval marks a continued effort to develop treatment protocols that could work for several different types of cancer—versus the old paradigm where cancer was treated based on the type rather than the genetic marker.

In Dr. DuBois’ trial, a total of 55 patients, ranging in age from 4 months to 76 years were treated. His findings were published in the February 22, 2018 edition of the New England Journal of Medicine. The article, “Efficacy of Larotrectinib in TRK Fusion-Positive Cancers in Adults and Children,” concluded that larotrectinib, had marked durable anti-tumor activity in patients with TRK fusion-positive cancer, regardless of the age of the patient or of the tumor type. The findings led to the recent FDA approval of the drug. The full article is available here

In addition to the support from ALSF, the trial was supported by Loxo Oncology and by grants from the National Institutes of Health, the Cancer Prevention and Research Institute of Texas and the National Center for Advancing Translational Sciences.


About the ALSF Center of Excellence grants program 
ALSF supports the advancement of clinical trials through its entire research grant program. By funding all stages of research from early career to advanced laboratory studies to our clinical trial programs, ALSF ensures that the breakthrough science happens now, so children can have cures for tomorrow.

Center of Excellence grants are given to institutions over a 5-year period to support research as well as the acceleration of clinical trials through funding for infrastructure needs and training the next generation of research scholars. In addition to Dana-Farber Cancer Institute, ALSF funds Children’s Hospital of Philadelphia, University of California San Francisco and Baylor College of Medicine through the Center of Excellence grant program.

This year, the four-Center of Excellence institutions announced the opening of a multi-site phase 1 clinical trial for a drug that shows promise for reactivating a gene that typically acts as a tumor suppressor. Called p53, the gene is often missing or mutated in several types of resistant childhood cancers including lymphoma, refractory leukemia, Ewing sarcoma, rhaboid tumors, retinoblastoma, hepatoblastoma and other cancers.  Subscribe to the ALSF blog for more details on this Phase 1 study. 

December 3, 2018

by Adam Paris

Eden is a 13 year old who loves to shoot photos and smile for her own snapshots. After being unable to walk or practice her favorite activity, dancing, for nearly a year, she was diagnosed at age 10 with a cancer no doctor had ever seen before. They tried standard chemotherapies for two different types of solid tumors similar to her cancer and after many months doctors deemed her cancer-free in March 2016.

Two years later, the cancer relapsed in her shoulder. Now, she and her tight-knit family continue to fight the cancer they named after her, Eden’s tumor, while waiting for a potential cure. 
As researchers learn more about Eden’s cancer, we wanted to give you a glimpse into Eden, the person. Check out our conversation below to learn more about this inspirational cancer fighter. 

ALSF: If you could have a superpower, what would it be and why?
Eden Green (EG): I would like to fly and be invisible. Flying is cool, but also scary. I like invisibility because I could hear conversations without being noticed in the other room. 

ALSF: What’s your go-to song to sing?
EG: I like to sing Francesca Battistelli. She’s a Christian artist so I sing her songs a lot, and then Lauren Daigle too. 

ALSF: I know you love taking photos! What do you like to photograph? 
EG: I like shooting nature a lot. I do a lot of flowers and nature shots and they turn out pretty good actually. 

ALSF: What is your favorite 2018 memory so far?
EG: My family went on a cruise in January. We went to Cozumel, Jamaica and Puerto Rico. I didn’t get to do as much this year because of my relapse. 

ALSF: What do you want to be when you grow up?
EG: It changes, but I kind of want to be a travel agent like my mom. I changed my mind from nursing because I don’t really want to do that anymore. Maybe a social worker at the hospital, but I don’t even know if I want to work at the hospital.

ALSF: What did you miss most while you were in treatment?
EG: I missed church, and we go to church a lot, so I missed going there. I like to see my friends and everything, so I didn’t get to see them really when I was diagnosed again. That was hard. I got to spend a little bit of my summer with my friends though, especially my one friend Rachel. She’s at my house like every day. I also missed going on trips that I was supposed to go on. 

ALSF: How has your family supported you?
EG: I don’t know, I’m asleep most of the time! My whole family is really funny though, but my dad he’s really funny. He’ll pull up things like the In My Feelings challenge videos to cops lip syncing stuff so he’ll watch those and start dying from laughter!
My sister Mya provides entertainment and my mom does too. Mom has to get her Fitbit steps in. When doctors come to help me I say, “Okay mom, you get your Fitbit steps in.”

ALSF: What does Mya do that helps you out? 
EG: She’s a competitive gymnast, so that helps me because I’m at the gym almost every day with her, watching their whole team. They practice every day for three hours. Most of the time before I relapsed, I was on the floor encouraging them during their routines. I actually got an award for being their team mascot. I’m like their group’s big sister because their siblings usually don’t come and watch them, so I’m always there. 

ALSF: What advice do you have for kids with cancer in the hospital?
EG: Stay strong and you’ll get through it. I’ve done it once and I’m doing it a second time so you can do it, I know you can. Keep having your faith and keep doing what you’re doing to help get through it.  

Our Q&A with Eden is the first in a series about her incredible story. Stay tuned next week for a discussion with her doctor, ALSF-funded researcher Dr. Jennifer Foster. 
 

YOU CAN MAKE A DIFFERENCE for children, like Eden, who want more opportunities to receive potentially lifesaving treatments and hope for a brighter, healthier future.

YOUR GIFT will fund the most promising, innovative scientific projects with the likelihood of making an impact.

YOUR SUPPORT allows Alex’s Lemonade Stand Foundation to continue to fund researchers around the country to develop less-toxic treatments and more cures for kids with cancer.

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October 16, 2018

by Trish Adkins

Alex’s Lemonade Stand Foundation (ALSF) has declared a war on childhood cancer.

Every day of every month of every year, the equivalent of a classroom of children is diagnosed with cancer in the United States—36 sons, daughters, brothers and sisters—all facing the fight of their lives. 

ALSF has worked to find cures—and has already made incredible strides in improving standards of care, increasing the number of childhood cancer clinical trials, helping families access cutting-edge treatments and funding breakthroughs like CAR T cell immunotherapy. Until there are cures for all children, more work must be done.

Here are 10 facts you need to know about the war on childhood cancer:

1. Children are dying.

Childhood cancer is the leading cause of death by disease for children in the United States. One in five children diagnosed with cancer will die within five years. And every year, an estimated 80,000 children die from childhood cancer around the world. 

2. The deadliest of all childhood cancers are brain tumors.

Brain tumors bumped leukemia out of the top spot in 2016. This isn’t because brain tumors are harder to treat, but because research has made enormous progress in treating several types of pediatric leukemia. 

3. Childhood cancer is biologically different than adult cancers.

Even though they share the same name, childhood and adult cancers do not necessarily share the same treatment protocol. 

4. Traveling for treatment can leave families with impossible choices.

The average cost of one hospital stay for a child with cancer is $40,000—five-times more than the cost of hospitalization for other pediatric health issues. Add another cost of traveling for treatment and families can be left choosing between putting gas in their tank and food on their table. In 2017, the ALSF Travel for Care program helped over 500 families access treatment by funding over 300 flights, 1,000 nights of lodging and 820,000 miles in gas cards.

5. Just 4-percent of the federal budget for cancer research is allocated towards children.

Imagine being told you can only eat 4% of your meal. Or you can only have 4% of your paycheck each week. For cures to become a reality, private research funding, from organizations such as ALSF, is required. 

6. The number of cures that researchers are searching for is infinite.

Childhood cancer is not just one disease or even a dozen diseasesthere are hundreds of subtypes. Researchers are searching for genetic targets within tumors and then developing and matching drugs to attack those targets, making cures a reality.

7. Big data could hold one of the keys to cures.

As researchers continue to discover targeted therapies, they can turn to data for assistance. The Childhood Cancer Data Lab, funded by ALSF, provides researchers with faster, easier access to the wealth of childhood cancer data available.

 8. It’s not just cures we need. We also need safer treatments.

Seventy-five percent of childhood cancer survivors are left with serious side effects for the remainder of their lives. Late effects of childhood cancer treatment affect organ and tissue function, growth and development, learning and memory and psychological adjustment. Treatment can also leave survivors at a higher risk of secondary cancers.

9. Accelerating the rate of clinical trials is key to accelerating cures.

Clinical trials provide two important functions: providing scientists with data and offering hope to children battling relapsed cancer. Clinical trials are expensive and time-consuming—but through the ALSF Infrastructure and Center of Excellence grant programs, institutions can access funds that support and speed up the establishment of clinical trials. 

10. Innovative collaboration among researchers will lead to cures.

The childhood cancer research community is working together to find cures. Through the ALSF Crazy 8 Initiative—a groundbreaking effort to build a roadmap to cures—researchers are working in a coordinated effort to ensure childhood cancer is just a memory. 

Learn more about how ALSF is funding breakthroughs and finding cures for childhood cancer and get more childhood cancer facts here.