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AYA, Pediatric Cancer Survivors

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These realizations allowed participants to piece together their understanding of cancer survivors and the health risks they now faced in a gradual way, months or even years after HCT…”

Adolescent and Young Adult (AYA) cancer survivors as well as survivors of pediatric cancers can be considered to be cured of their cancer yet experience a myriad of long-tern and late stage side effects in the years and decades following the end of conventional therapies.

I should know. I am an AYA cancer survivor who has lived with long-term and late stage side effects since the completion of my autologous stem cell transplant in late 1995. Though I gave been “cancer free” since 1999.

Full disclosure: I was 34 when I was first diagnosed. This is pretty old for a pediatric or AYA cancer patient. My point in researching and writing this post is two things.

  • First, draw attention to the serious life-changing side effects experienced by AYA and pediatric cancer survivors-
  • Second, draw attention to the evidence-based but non-conventional therapies that can reduce or eliminate these long-term side effects. 

Let me be specific.

I will focus on the studies linked and excerpted below.

  • Epigenetic Aging- consider evidence-based but non-toxic therapies shown to slow aging. Nutrition, supplementation and exercise to name three.
  • Epigenetic changes to the survivor’s DNA- this is a long-term issue that no one fully understands. However, reducing your risk of cancer is a documented aspect of different supplementation but also nutrition and exercise. 

The bottom study below documents the depressive feelings caused by the survivor coming to the realization that he/she will be dogged by long-term and late stage side effects for the rest of their lives.

Again, the issues is conventional FDA approved thinking versus evidence-based but non-conventional thinking and therapies. This approach is highlighted in the posts below.



If you would like to learn more about side effect prevention, scroll down the page, post a question or a comment and I will reply to you ASAP.

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Hang in there.

David Emerson

  • Cancer Survivor
  • Cancer Coach
  • Director PeopleBeatingCancer

Recommended Reading:

Steep Price for Surviving Childhood Lymphoma: Epigenetic Aging

“Children with Hodgkin lymphoma can be cured with intensive chemotherapy, radiation, and other modalities, but a large majority of patients who survive into adulthood may pay a steep price years later in terms of accelerated aging and neurocognitive impairment…

In addition, this accelerated epigenetic aging in HL survivors was accompanied by neurocognitive deficits, including declines in visual-motor processing, short-term memory, verbal learning and recall, and executive function…

Long-term Complications

Williams and colleagues had previously reported that compared with their healthy siblings, long-term survivors of HL­ had significantly higher risk (P < .05 for all comparisons) of neurocognitive impairment, anxiety, depression, unemployment, and impaired physical/mental quality of life…

More than 80% of the survivors had some degree of accelerated aging, compared with only 23% of controls…”

A Toxic Inheritance: Chemotherapy Could Increase Disease Susptibiity in Future Generations

“New research led by Washington State University has found that a common chemotherapy drug called ifosfamide may have toxic effects that can be passed down to the children and grandchildren of adolescent cancer survivors…

The study, published in the journal iScience, discovered that male rats who received ifosfamide during adolescence had an increased incidence of disease in their offspring and grand-offspring. This is the first known study to show that the susceptibility to disease resulting from cancer treatment can be passed down to the third generation of unexposed offspring…

The findings suggest that if a patient receives chemotherapy, and then later has children, that their grandchildren, and even great-grandchildren, may have an increased disease susceptibility due to their ancestors’ chemotherapy exposure,” said Michael Skinner, a WSU biologist and corresponding author on the study…

The researchers also analyzed the rats’ epigenomes, which are molecular processes that are independent of DNA sequence, but influence gene expression, including turning genes on or off. Previous research has shown that exposure to toxicants, particularly during development, can create epigenetic changes that can be passed down through sperm and ova…

The results of the researchers’ analysis showed epigenetic changes in two generations linked to the chemotherapy exposure of the originally exposed rats. The fact that these changes could be seen in the grand-offspring, who had no direct exposure to the chemotherapy drug, indicates that the negative effects were passed down through epigenetic inheritance…”

“Improving to where?”: Treatment-related Health Risks and Perceptions of the Future among Adolescents and Young Adults after Hematopoietic Cell Transplantation

Based on data from the Center for International Blood and Marrow Transplant Research from 1968 to 2009, there are approximately 108,900 HCT survivors, including 67,000 autologous and 41,900 allogeneic, in the U.S., and these numbers are expected to increase 5-fold by 2030 as application for this treatment continues to expand ()…
 In this qualitative study, we investigated the impact of the cancer experience on sense of life potential and perception of the future from the perspectives of adolescents and young adults after hematopoietic cell transplantation…
Methods: In-depth interviews were conducted with adolescents and young adults who underwent allogeneic or autologous hematopoietic cell transplantation between the ages of 15–29 years and were 6–60 months post-treatment
Results: Eighteen adolescents and young adults participated and described how they came to understand the lifelong, chronic nature of cancer survivorship. “Improving to where?” was a question raised in the post-treatment period that reflected participants’ confusion about the goals of treatment and expectations for survivorship. Participants reported bracing themselves for “something bad” to deal with the uncertainty of medical and psychosocial effects of treatment.
They struggled to move forward with their lives given their substantial health risks and found it necessary to “roll with the punches” in order to adjust to this new reality
Conclusions: Adolescents and young adults who undergo hematopoietic cell transplantation are at significant risk for long-term and late effects in survivorship. Age-appropriate interventions are needed to support these survivors as they manage their fears about the future while enhancing health and wellbeing
However, the therapeutic exposures of HCT contribute to significant physical and psychological morbidity among this growing group of survivors, persisting for many years beyond treatment ()
Although participants had no evidence of disease, they continued to have persistent health issues, including pain, anxiety, sexual dysfunction, abnormal liver function, chronic graft-versus-host disease, avascular necrosis, and the inability to work or in many ways, enjoy life, all of which reinforced that they were “still not 100%.” 
One participant explained, “It’s not like, oh, it happened and then I got over it. It’s like it kept interfering with my life.” Another stated, “Getting your life back just wasn’t the same. It wasn’t like, ‘Okay, let’s wrap it in a pretty little bow and go to the next thing.’ It was hard.” Receiving positive feedback from health care providers (“You’re improving”) while simultaneously struggling with health problems triggered confusion and caused many participants to question the ultimate goals of treatment, as one participant vehemently asked, “Improving to where?”

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