Study Examines Late Effects and Treatment Protocols for Hodgkin Lymphoma in Children
Childhood cancer and its treatment come at a risk of late effects for survivors. In fact, the evidence shows that two of every three childhood cancer survivors are at increased risk of at least one late effect due to their cancer or its treatment, including heart disease, second cancers and cognitive challenges.
A recent study published in JAMA (The Journal of the American Medical Association) looks at the treatment of Hodgkin lymphoma in children and the resulting risk of cardiac disease to survivors.
POGO Medical Director, Dr. David Hodgson, is the lead author of the study titled Late Cardiac Toxic Effects and Treatment Protocols for Hodgkin Lymphoma in Children.
“Cardiac disease as a late effect of treating Hodgkin lymphoma is a serious risk that is well documented,” he says. “One of the challenges of improving treatment is that we don’t want to wait for over 20 years to observe the late effects of treatments we’re currently giving today. The goal of this study was to estimate the risk of late effects of current treatment to better understand how to advise current patients and families, and also explore what changes to treatment would have the greatest benefit to reduce these risks.”
Understanding the extent to which treatment can be modified for improved health outcomes is critical for several reasons.
- Reducing treatment intensity is a trade-off against the risk of relapse.
- Understanding which components of treatment can be adjusted, and to what extent, can lead to better decisions about treatment modifications.
- Care for survivors is based on their treatment exposure making the burden of follow-up care an important consideration.
The study evaluated the treatment of 2,563 patients with Hodgkin lymphoma treated in four consecutive Children’s Oncology Group clinical trials between 2002 and 2022. Patients were treated with different doses of radiation therapy and doxorubicin chemotherapy – both of which are known to increase the risk of cardiac late effects. Based on the doses of these treatments, the 30-year cumulative incidence of severe or life-threatening heart disease was estimated to decrease from 10% in the first trial to 6% in the last trial. The findings were favourable, suggesting that evolutions in treating Hodgkin lymphoma will lead to a net reduction in late cardiac disease. Moreover, findings suggest that for adolescent and young adult patients, increasing the use of “cardioprotective” medications during treatment would be one of the best ways to reduce this risk further, without compromising cure rates.
“While there is still work to be done to monitor the long-term gains in reducing cardiac toxic effects, this is encouraging news that bodes well for the quality of life of childhood cancer survivors,” says Dr. Hodgson. “And, as with every study, we need to ensure that the guidelines for follow-up care of survivors, particularly in POGO AfterCare Clinics, are updated to reflect the latest evidence.”
Read the study here.
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Freedom International: Childhood Cancer Champion Since 2016
Freedom International Brokerage Company (Freedom) is one of Canada’s leading full-service, Inter-Dealer Brokers—providing electronic brokerage services to wholesale capital market participants in Canada and globally.
Since 2016, Freedom has been a committed corporate partner to POGO, demonstrating their shared vision of making a difference in the lives of children battling cancer through substantial financial, in-kind and volunteer contributions.
Freedom’s involvement began when Kevin Kirby, President and CEO, joined POGO’s Development Cabinet, a group tasked with growing POGO’s fundraising revenue. Recognizing their values aligned with POGO’s mission, Freedom quickly became a valued partner and has contributed $302,500 over the last nine years in support of POGO's programs and signature events that raise critical funds for childhood cancer research, financial assistance to families, and school and work supports for survivors.
Tim Anastakis, Vice President at Freedom, underscores the significance of their partnership with POGO, stating, "Knowing that I work for a company that prioritizes children's charities makes me proud," a sentiment that is echoed amongst Freedom employees.
In addition to their financial support, Freedom goes above and beyond by providing coveted tickets to Toronto Blue Jays and Toronto Maple Leafs games—offering families the chance to have happy moments together at a time that is typically filled with hospital visits and days at home sick.
"It's a pleasure knowing Freedom ticket donations help towards brightening a child's life even for a small moment." – Andrew Cooper, FX Forward Broker, Freedom International
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How Slushies and Red Lights Provide Supportive Care for Childhood Cancer Patients
About a decade ago, I sat in a hospital in Leeds, Yorkshire, discussing with the parents of one of my young patients their high-dose chemotherapy treatment, including the risks of severe infection, liver and lung problems. “And,” I added as an aside, “there’s a chance of mucositis, which is a sore mouth, like a mouth ulcer.”
Three weeks later, and the child could hardly open their mouth—with lips cracked and bleeding, spitting out small pieces of the lining of their mouth, unable to eat or even swallow their own saliva. The lack of attention I had paid to mucositis up to that point struck me hard. And back then, there was very little we could do to prevent or treat it.
POGO Guidelines Offer New Approaches to Mucositis Care
Fast forward to mid-2020s when the POGO Clinical Practice Guideline update to Prevention of oral and oralpharyngeal mucositis in pediatric cancer and hematopoietic stem cell transplant patients summarized the most effective—and importantly the ineffective—therapies and approaches to prevent and treat mucositis in children and young people.
The POGO guideline gave us some new approaches to try, and, as it was an extremely well-produced and high-quality international guideline, the leverage to kick some of these approaches into action.
Why is it important that the guideline marks out ineffective treatments?
1) There's the hassle of taking medicines when they don't do anything.
2) There's the side effects, including stinging and bad tastes.
3) There's the unnecessary costs to the health service.
Slushies Bring New Meaning to Cold Comfort
One approach suggested in the guideline was "cryotherapy." You might have heard about cryotherapy for freezing off veruccas (warts) on your feet, or maybe with respect to Walt Disney freezing his body after death, but the phrase just means "treating with cold." In the case of mucositis prevention, this means the patient holding ice chips in their mouth. It's meant to reduce the amount of blood flowing to the delicate layers just inside the mouth, and so reduce the amount of chemo passing there to cause damage. In the UK, we struggled with the technical troubles of how to exactly procure, store and regulate popsicles within our hospital system, but this has been spectacularly and tastily overcome at McMaster Children’s Hospital in Hamilton, Ontario, with an in-unit slushie machine. Choosing which slushy you can have with chemo seems much more appealing than holding an ice cube in your mouth until it melts!
Shining a Red Light on Healing
The other main approach in the guideline was photobiomodulation. This is the use of a special wavelength of red (or infra-red) light to encourage the cells of the mouth lining to heal faster. Working with a hugely enthusiastic pair of dentists, and in collaboration with our local hospital charity, we acquired an LED-based photobiomodulation system. We put together detailed information on how to use it, how to clean it, and (after a beautiful bit of co-design and qualitative research from Dr. Claudia Heggie), a film made with young patients to explain it.
Now, despite my slight incredulity that shining what looks like a fancy red torch on someone would make them feel better, we use it frequently. We’ve massively reduced the severity of mucositis in our transplant unit and reduced the numbers of patients who've needed TPN (all your “food” fed through your central line). We’ve had patients travel from long distances to get some red light magic to feel better. We’ve seen requests from around the country asking how other units in the UK can get it going. Which makes us sound great, but it should be noted that this only got going because the POGO guidelines were there. Not wishy washy “expert” statements from the manufacturers of these devices, but guidelines with solidity and seriously interrogated evidence. This quality of document helps us persuade the administrative teams who need to control the finances of our hospitals that the intervention is truly likely to help our patients, and maybe even save money.
POGO’s Impact Immeasurable
These guidelines, the creation of a team based in Ontario, has spread good things much, much further. POGO, please listen to me, as a “come from away”: your work has power. POGO should be extremely proud of the guidelines they develop, nurture, help to create and support the uptake of. The impact they have around the world is immeasurable.
By Bob Phillips, BMBCh, PhD
Professor of Pediatric Oncology and Director, Candlelighters Supportive Care Centre,
University of York/Hull-York Medical School, UK
Dr. Bob Phillips is a Senior Academic at the Centre for Research and Dissemination and Hull York Medical School and an Honorary Consultant in Pediatric/ Teenage-Young Adult Oncology at Leeds Children's Hospital. Bob is a respected global leader in supportive care management. He spoke at the 2023 POGO Symposium on Childhood Cancer.
A Reservoir of Strength: Navigating My Child’s Cancer Journey
A question I’m often asked is, “How did it all start?”
It starts with our daughter Ellie—our healthy 10-year-old daughter who played on every sports team. To us, she was the picture of vitality.
One day we noticed what we thought was an innocent bump on her left cheek. Our general practitioner (GP) wasn’t concerned, thinking it was just a benign tumour made of fat tissue. We didn’t think too much of it until it started to grow. Ellie didn’t like how it was changing her face, so we made an appointment with a plastic surgeon to have it removed. Like our GP, he also assumed it was a little benign cyst and that it was nothing to worry about.
Two weeks later, we visited our plastic surgeon for Ellie’s routine post-op meeting. I observed the nurse’s energy and knew that something was wrong. It was the way his eyes darted between me and his computer screen that made the air in the room shift. At that exact moment, I felt my world fracture.
The plastic surgeon took me into the hall and told me Ellie’s biopsy was abnormal and needed to be sent away for more tests. Ten days later, we received the devastating news—our little girl had a type of cancer called rhabdomyosarcoma.
Struggling to make sense of our new reality, we met Arvinder, our POGO Interlink Nurse. When she called to book her first home visit with Ellie, I remember confessing to her that I was terrified and didn’t know how to get through this. She quickly replied, “Don’t worry; you’ve got me now, and I’m going to get you through this.”
Arvinder kept her promise. She’s made multiple home visits; connected us to every single resource we can access; met with Ellie’s teachers and explained to them how her treatment has affected her learning, academics and more, and, above all, she held our hands every step of the way.
About two months into Ellie’s treatment, we were at the hospital for a long day of chemo. Our oncologist asked me to step out and meet her in a small room down the hall from where my husband was sitting bedside with Ellie.
She calmly told me that Ellie’s biopsy indicated she may have a genetic mutation that would make her chemo-resistant. If Ellie was positive for this gene, it meant her treatment plan and chances of survival would change drastically. This also meant that our son, Oakley, might carry the same gene, making him vulnerable to a cancer diagnosis as well. Once again, the air in the room changed, and I was thrown even deeper into a place of fear and uncertainty.
Returning to the room where Ellie was receiving chemo, I had to sit across from my husband and text him every word I could remember our oncologist saying. My hands were trembling while I wrote to him, watching his face absorb this news two feet away from me. We were unable to react, hold each other or say anything without Ellie catching on. Instead, we just sat there silently while tears filled our masks.
Something interesting happens when you’re faced with the traumatizing and terrifying possibility that you could lose your child. It turns out we have this hidden reservoir of strength buried deep inside us. All parents have it, I assure you. And when your child’s health or wellbeing is threatened, the doors to this reservoir get ripped off their hinges and you are flooded with a strength and resilience you didn’t know you had.
During the seven agonizing weeks that we waited for Ellie’s genetic test results, we waited to find out if our daughter would survive this or not. We made her comfort our primary focus, trying to find as many moments of joy and peace as we could. We did everything we could to turn our fear and grief into love and beauty for our daughter. And it worked. When Ellie looks back at her treatment, she mostly remembers it as a cozy, warm and family-centered time. She remembers us all cocooned on the couch, sitting by the fire, taking long warm baths (which we did every 45 minutes, day and night, to relieve the pain). We did everything we could to make her feel hugged, when in reality, we were clinging to the edge trying to maintain our grip.
Finally, I got the call confirming Ellie was negative for the genetic mutation, and we were cleared to proceed to our next phase of treatment—precision radiation called proton therapy, which was only available to us in Jacksonville, Florida. This moment will go down as the most glorious release, the greatest exhale a human being can ever make. It changed every breath I’ll ever make again, and it changed my entire life.
When we returned home to Canada after two months in Jacksonville, Ellie continued chemo at the POGO Satellite Clinic at Credit Valley Hospital—a warm and lovely treatment space not too far from our home. Her nurses, Lindsay and José, walked Ellie through every step of the process and gave her control over her treatment. We saw the same faces every week, which helped alleviate Ellie’s fears. And when she would get a fever in the middle of the night, we had our cozy, familial place to go to.
It's been 10 months and Ellie’s scars have healed, her hair has grown back and she is back in school and on all her favourite sports teams. But as I said before, cancer doesn’t have a clear ending. It’s not over when chemo is done or when a child rings the bell. Ellie’s collateral damage is still to be determined. There is the real possibility of complications later in life and we all live with the fear of relapse or secondary cancers when she’s older.
Despite my worries, I find comfort in knowing that POGO is still on this journey with us post-treatment. Ellie will be monitored regularly for the rest of her life at a POGO AfterCare Clinic. If any late effects are detected, they will be caught early and treated, and the information about her childhood diagnosis and its treatment will continue to be available to us and used as a guide.
I want to make note of a beautiful thing that happens during a child’s treatment. You’ll notice when a parent is talking about their child’s cancer, everything is framed as “we.” “We” have chemo today, “we” have a port flush, “we” have bloodwork, “we’re” being admitted. And families speak this way because our child is an extension of us—if they’re going through something, you better believe we’re going through it right beside them, every step of the way.
I cannot speak for other families, but for ours, the “we” extended beyond our family unit. Arvinder, our POGO Interlink Nurse became part of our “we.” Lindsay and José at the POGO Satellite Clinic became part of our "we." Not merely as part of a service or an access point, but as part of our team and our family, who we simply could not have done this without.
To us, POGO is and forever will be part of our “we.”
Adapted from Samantha Taylor's speech at the 2024 POGO PJ Party
