The struggle for survivors

The struggle for survivors

Life-saving treatment can cause its own health issues. Researchers are devising ways to remove the dark cloud from the silver lining. 

When children bravely overcome cancer, their struggles are far from over. Sometimes the life-saving treatment causes its own health issues. Researchers are devising ways to remove the dark cloud from the silver lining.

When his mum rushed him to the emergency room on Good Friday in 2014, five-year-old James was taking Panadol and Nurofen, but still the pain in his head was causing him to scream in agony.

During the eight weeks prior, medical experts including his GP, an ENT specialist, his dentist and more had not been able to figure out what was causing the pain, the swollen glands and a lump on the side of his head. But after scans that night in the hospital, the full extent of his terrible condition suddenly became clear.

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“A tumour was below his brain and filling every other space and cavity in his head,” mum Toni says. “It was all through his nasal cavity, it was backing onto the top of his brain, it was pushing out the side of his head and going down his throat. It had even wrapped around the nerves that ran through his ear.”

There was simply no space left inside his head, scans revealed. James had only a millimetre of airway left in his throat. It was Burkitt’s lymphoma, a fast-growing cancer. Without treatment, he would die. In fact, without treatment in the next few hours, he would die. James began chemotherapy almost immediately.

“The first shot of chemo broke the tumour up,” Toni says. “The doctors were blown away. We knew how effective it was because James had always snored loudly. But since that first night in hospital and after one shot of chemo, James has never snored. The treatment was amazing.”

The chemotherapy continued for six months. By the end of that period, the cancer had been beaten. It was gone. Having aggressively and painfully invaded every available space in James’s head, it was defeated. 

However, a new medical battle was only just beginning.

During his rounds of chemotherapy, a drug called anthracycline had affected a valve in his heart. This drug that helped to save the boy’s life, and that he took only twice, has led to cardiomyopathy, a thickening of the heart muscle.

James, now 11, is taking heart medications to help manage this condition. He has learned to rest when he needs to. He’s happy to ride a bicycle or jump on a trampoline, for instance, but only for ten minutes at a time.

James and his family are now doing all they can to support research into new drugs and new therapies.

Read more: Understanding the genetic basis of chemotherapy-induced cardiomyopathy

“For us, as a family, if something good can come out of what we’ve been through, if we can help other children and families to not have to go through these side-effects, it would be amazing,” Toni says.

“In the trial we’re on at the moment, James has had some blood taken. They’re growing a baby heart to see if the gene for cardiomyopathy is in there, then they’ll remove the gene to see if the heart will heal itself. That will explain if this has anything to do with genetics or not,” Toni explains.

“That’s one of the parts of what we’re doing at the moment. James also goes to the Baker Heart and Diabetes Institute and they do lots of exercise MRIs and different bits and pieces, with a few other children too, so they can get some good information on how the condition is affecting his heart and what they can do to help. So, we don’t just support research, we take part in it.”

This is a four-year study, funded by The Kids’ Cancer Project in partnership with the RACP Foundation, looking at anthracycline-induced cardiotoxicity (ACT). ACT can result in life-threatening impairment of heart function, with 70 per cent of severely affected patients dying from the complication.

Around the world, every year over 300,000 kids receive anthracyclines during their cancer treatments and in around 60,000 survivors, the major long-term side-effect is cardiac damage.

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Researchers Associate Professor Rachel Conyers and Associtate David Elliot have discovered that children who suffer this heart damage have genetic markers, potentially predisposing them to ACT.

Read more: Behind the science | Dr Rachel Conyers

“We want a world in which life-saving medicine isn’t life threatening,” Toni says. “We hope that one day a prevention or cure for heart damage from cancer treatment can be found so that other children can have better outcomes.  We want James to beat this one too.”

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