http://www.raredr.com/news/parents-silent-prayer
A Parent's Silent Prayer: Preventing Hearing Loss for Childhood Cancer Survivors

by Mary Beth Collins

“Your child has to be alive to experience side effects.”  

That statement is heard by every parent reviewing treatment protocol for a child with a high risk pediatric cancer.  At that moment, the focus is on keeping a child alive and achieving No Evidence of Disease, or ”NED” as it’s commonly referenced.  With a survival rate of 83% for pediatric cancers, the childhood cancer community is doing a better job than ever of keeping children alive, even when facing the highest risk cancers like neuroblastoma or brain tumors.

Unfortunately, according to St. Jude’s Hospital, 95% of those survivors experience at least one significant side effect.  Platinum-based therapies are common in these treatments and typically result in high frequency hearing loss.

A promising development is Pedmark (an injectable formulation of sodium thiosulfate ("STS"), which is used during chemotherapy to protect the patient’s hearing and mitigate the threat of loss. At the 49th Congress of the International Society of Pediatric Oncology (SIOP) 2017 Meeting, a symposium was held focusing on the progress of STS as a treatment.  At this meeting, researchers demonstrated that the addition of STS significantly reduces the incidence of cisplatin-induced hearing loss without any evidence of tumor protection. The presentation reviewed the results of the Phase 3 SIOPEL 6 study.  As Penelope Brock, M.D., PhD, International Chair of SIOPEL said, “This means that children who are cured from cancer after receiving platinum treatment can look forward to a normal healthy life, fully integrated into society.”

As the mother of a 20 year old neuroblastoma survivor who experienced moderate-to-severe loss in both ears after one single cisplatin dose, I was overjoyed at the presentation sharing the success of SIOPEL 6.

For 18 yrs, my son and I have accommodated our lives with audiology appointments, IEP/504 meetings, and modification of things at home. It has been difficult over the years, to watch the hearing issues grow from moderate-to-severe to profound loss. But even harder are the days when things like soccer became problematic because teammates were unkind simply because he couldn’t hear them on the field,  or when a celebration of his younger brother finally being able to sit in the front seat of the car quickly spiraled into another “learning opportunity” for me, as my survivor became teary-eyed in the back seat mumbling:  “My life sucks. I can’t hear anything you two are saying up front.” Or countless teacher meetings when I’d have to work directly with educators to help them understand how hearing loss exponentially impacts the learning process, and creatively motivate them to partner with me to support my son. Or how quickly the removal of the hearing aids at home has been the barometer of the difficulty of the day: stress, illness, or exhaustion resulting in the need for a break from the extra work required to use aids to stay connected with the world. Or watching job consideration measured by the ability to read other people’s lips while completing tasks.

While hearing loss is typically only one of multiple chronic side effects that many of these high risk cancer survivors experience, this loss touches just about every aspect of one’s life. To learn that researchers have created something to shield young cancer patients from experiencing this loss is a life changer. It is a pledge that not only may treatments save our children but quality of life as well. It is an answer to a parent’s silent prayer that survivorship doesn’t need to be so hard to survive, for kids who have already endured so much. It is a step closer to living the mission of SIOP to not only cure our children, but provide them a more normal life alongside other healthy children.

Relieving a child of the significant threat of high frequency hearing loss has a greater impact than many realize.  Those diagnosed with these higher risk cancers are on the average under the age of 5 years; the formative years for development.  The vast impact on the life of a child was documented in Pediatrics (2010) within the article Auditory Late Effects of Childhood Cancer Therapy: a report from the Children’s Oncology Group: “[Children with hearing loss] may experience impairments in learning, communication, school performance, social interaction and overall health-related QOL, and survivors exposed to potentially ototoxic agents require careful monitoring and adaptations.” At a time when research continues to detail the extent with which current therapies are impacting the quality of a survivor’s life throughout the lifespan, developments like Pedmark couldn’t be more welcome.

If you would like to learn more about Pedmark and the results of the study, please view the press release on Fennec’s website.

Images courtesy of the author.
 
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