At The Leukemia & Lymphoma Society (LLS), we celebrate every advancement toward our mission of curing blood cancer and improving the quality of life for patients and their families. Today’s reason to celebrate is the news that the U.S. Food and Drug Administration (FDA) has approved a new treatment for children with a rare type of cancer called ALK-positive anaplastic large cell lymphoma (ALCL).
ALCL constitutes approximately 10-15% of non-Hodgkin lymphoma in the pediatric population. This rare lymphoma is curable with standard chemotherapy for most children, but the newly approved drug from Pfizer, crizotinib (XALKORI®), is now an option for those whose cancer returned or worsened despite earlier treatment. This is a long-awaited treatment option for the pediatric population, as anaplastic lymphoma kinase (ALK) inhibitors have been approved for adults with metastatic non-small cell lung cancer and lymphoma for years. ALK, the molecular target for crizotinib is altered in 85% of pediatric ALCL patients. This alteration in ALK is much less prevalent in adult ALCL; treatments for ALK-negative ALCL is the subject of a current LLS grant provided to Dr. Andrew Feldman (Mayo Clinic, Rochester, MN).
In clinical studies for the pediatric indication, crizotinib was efficacious based on objective response rate (ORR) and duration of response as assessed by an independent review committee. The ORR in the 26 patients was 88% (95% CI: 71, 96), with a complete remission rate of 81%. Of the 23 patients who achieved a response, 39% maintained response for at least 6 months, and 22% maintained response for at least 12 months.
Medical advancements are never more important than when they lead to cures for children. LLS has been at the forefront of advances in pediatric blood cancer since its founding in 1949, and with the launch of the Children’s Initiative in 2019, continues to take on children’s cancer from every direction. Most children with blood cancers are treated with the same toxic combinations of chemotherapies developed decades ago. LLS is committed to revolutionizing the standard of care for children with cancer and providing them with safer, more effective treatments that rely less on chemotherapies that harm healthy cells in the body.
While we celebrate today’s good news and what it means for children with ALK-positive ALCL and their families, we at LLS also remain focused on how much more there is to do.
Through the LLS Children’s Initiative, an unprecedented collaboration, we are setting out to transform pediatric blood cancer treatment and care. The initiative is focused on saving even more children from blood cancers, but our focus goes deeper. We want to shift the standard of care for children, moving them away from toxic chemotherapies and toward effective and safe precision medicine treatments that target their cancer without harming the rest of their bodies.
LLS is striving to raise $100 million for this multi-year collaboration to expand our investment in leading-edge research, provide a comprehensive array of free information, resources and financial support for affected children and families, and support policies that break down barriers to accessing care and developing new treatments.
LLS financial investments are strategically designed to fuel scientific breakthroughs, but breakthroughs, despite how they sound, do not happen quickly. The journey from laboratory discovery to the ability to control or even cure a disease is a long road. LLS, on behalf of blood cancer patients, our volunteers, and our advocates, provides sustained funding in research programs that can make cures happen.
Lee Greenberger, Ph.D., is the Chief Scientific Officer of The Leukemia & Lymphoma Society
The LLS Blog invites Aaron, who was diagnosed with peripheral T-cell lymphoma (PTCL), to share his reflections on becoming a self-advocate throughout his cancer experience. Read his powerful first-hand account below.
Hearing the words “you have cancer” is one of the scariest moments a person can experience. Hearing those words during a global pandemic is even more terrifying. And hearing them as a brand new mother to a one month-old baby, is unimaginable. Thirty-year-old Lisa Lund of Ankeny, IA knows these words all too well.
On March 13, 2020 – the same day COVID-19 was declared a national emergency — Lisa’s world was turned upside-down when she was diagnosed with a rare subtype of lymphoma called nodular lymphocyte predominant Hodgkin lymphoma (NLPHL), which is a type of blood cancer that develops in the lymphatic system. She was immediately admitted to the hospital after her diagnosis to undergo intense treatment, and had to say goodbye to her newborn daughter Quinn, unsure of whether or not she’d ever see her again.
Lisa would continue to stay in the hospital for over two weeks fighting for her life and with little access to visitors, due to the pandemic. She gives all credit to Quinn for being her inspiration to make it home.
“My heart ached not being able to see Quinn, those were by far the toughest two weeks of my entire life,” said Lisa.
Making 2021 the Year to Find Cause, Community & Cures
After a shattering year, which included countless biopsies and blood transfusions, six rounds of chemotherapy and 18 radiation treatments, Lisa is now home with her family again. She’s had two No Evidence of Disease (NED) scans that have both come back negative, and she is proud to be completely done with her treatment program.
Lisa is determined to sharing her experience and motivate others to join her in the fight to end blood cancer. She is currently participating in LLS’s latest virtual fitness challenge, Team In Training’s Re(Solution) Challenge, aimed at helping individuals and communities reimagine their health goals — all while saving lives.
Kicking off in January 2021, Re(solution) Challenge is a 31-day challenge happening in communities across the U.S., in which participants set a mileage goal for themselves through any sport or activity of their choice. Participants can register on their own for free or invite others to join in on the challenge as well – anyone can join from anywhere.
“2020 was so tough but I’m excited to join Re(Solution) with LLS to help make 2021 the year we resolve to find cancer cures,” said Lisa.
Through Team In Training, she is now an LLS volunteer and is especially looking forward to providing a support system for other moms fighting cancer.
“LLS has so many free resources for anyone effected by blood cancer like their Information Resource Center and The LLS Bloodline Podcast, which I listened to while I was in treatment to remind me that there is still hope after a cancer diagnosis,” said Lisa. “Now I’m looking forward to giving back through Re(Solution) with the Team In Training Family who has welcome me with open arms — I really feel like I have found a group that will support me for years to come.”
Reimaging Your Own Potential
While she’s still working every single day on getting her full fitness strength back, Lisa has already hit the ground running, literally and figuratively. She’s even had early fundraising success by selling bracelets with engraved words that read, “You Can Do Hard Things,” which is a motivational phrase that got her through her own uphill battle with cancer. “Instead of allowing yourself to give up when times are hard, tell yourself, you can do hard things!” said Lisa.
She provided the below top three tips for anyone impacted by the devastation of blood cancer:
Throughout this whole experience, I never allowed myself to ask why this was happening. I went straight into survival mode, and for me that included keeping a positive attitude through the whole experience.
Take care of yourself
I also did everything I could to help heal my body. There were days that were harder than others, but I always stretched if walking around the block felt too difficult. I tried to eat as healthy as possible to keep my strength up, and I allowed myself to get extra rest as well.
Keep life normal
I tried to keep life as normal as possible. After maternity leave, I started to work virtually. I got back to cooking dinner for my husband and me. All the little, everyday things that go into my normal day, I started to get back to even during treatment. They made me feel like myself, again.
Join the (solution) in the fight against blood cancers
Cancer will not wait for COVID-19 to go away, and LLS will continue to take on the most complex challenges in blood cancer as we reimagine the way we fundraise this year and beyond. In January 2021, are coming together to achieve our new individual health and wellness goals, while working toward a world without blood cancer.
Participants can customize their own experience by not only choosing their sport (running, walking, hiking, cycling, swimming, etc.) but their mileage goal as well (25, 50, 100, 250 or 500). Registration is free, and there is no fundraising commitment. LLS provides all the tools needed, including a heart-pumping music playlist with motivational messages. Here’s how it works:
How to Participate
Register here & create your Re(Solution) Challenge account. Then, invite others to take on the challenge with you!
Share your fundraising page with your friends, family & social followers to let them know have resolved to cure cancer by fundraising for The Leukemia & Lymphoma Society. Track your challenge progress in your Re(Solution) Challenge account.
Join us for a Virtual Post Challenge Party to celebrate our collective accomplishments!
Re(Solution) Challenge Playlist
Fundraising & Social Media Toolkit
Training Resources with an Exclusive Event Facebook Group
Badges & Achievement Milestones
Digital Finisher Certificate
Virtual Finisher Medal
Virtual Post Challenge Celebration
New & Exclusive Swag
While Re(solution) Challenge is LLS’s newest addition to its national virtual fundraising campaign portfolio, all of LLS’s signature fundraisers have helped LLS invest nearly $1.3 billion in cutting edge research worldwide, fueling nearly every critical advancement in blood cancer treatment that spans the most promising science, including immunotherapy and personalized medicine.