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AYA Surviving Stem Cell Transplant- Therapy Plan
“AYA (and Pediatric Survivors) who undergo hematopoietic cell transplantation (allo, auto SCT) are at significant risk for long-term and late effects in survivorship.”
Boy, is that an understatement. AYA and pediatric cancer survivors are at “significant risk” of long-term and late effects as time passes. Please read the second study linked and excerpted below to understand the specifics of this understatement.
I don’t mean to sound sarcastic or angry by writing about long-term and late effects of hematopoietic cell transplantation. The same long-term and late stage side effects have happened to me over since my autologous stem cell transplant in 12/95 so I have specific feelings about this issue.
I fault conventional oncology for not talking about “treatment-related health risks” with their patients before hematopoietic cell transplantation. But that’s the nature of oncology.
It is difficult coming to the realization that your oncologists lied to you by not explaining what surviving a SCT really meant.
Just as difficult is the idea that conventional oncology knows little if anything about evidence-based but non-conventional therapies shown to:
Reduce the risk of chemotherapy-induced Cardiomyopathy
- Reduce the risk of secondary cancers
- Heal chemobrain, heal heart damage
- Reduce joint, muscle, bone pain
- Reduce anxiety
I’m not talking about returning to complete normalcy, I’m only talking about what I have accomplished-
- my ejection-fraction
- chemobrain
- nerve damage
- bone health
- muscle pain
all continue to improve. And I continue to remain in complete remission from my “incurable cancer.” And no treatment-related secondary cancers…
All due to evidence-based but non-toxic, non-conventional therapies such as nutrition, nutritional supplementation and lifestyle therapies such as whole body hyperthermia aka sauna.
No thanks to my conventional, board-certified medical doctors.
To learn more about evidence-based, non-conventional therapies that can help you manage your long-term and late effects of hematopoietic stem cell transplantation, scroll down the page, send me a comment or a question and I will reply to you ASAP.
Thanks and hang in there,
David Emerson
- MM Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
Recommended Reading:
- Cure Multiple Myeloma? Aggressive, Toxic Therapies…
- Stem Cell Transplant- Treatment-related Secondary Cancer
- Multiple Myeloma Chemotherapy- Heart Damage Risk 300% Higher!
“Improving to where?”: Treatment-related Health Risks and Perceptions of the Future among Adolescents and Young Adults after Hematopoietic Cell Transplantation
“Despite the prevalence of hematological malignancies in early adulthood, very little is known about hematopoietic cell transplantation among adolescents and young adults, and even less is known about their transition from the completion of therapy to early survivorship…
Eighteen adolescents and young adults participated and described how they came to understand the lifelong, chronic nature of cancer survivorship. “Improving to where?”
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…
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…
The 18 participants were, on average, 23.3 years of age at HCT (range: 18.5–29.7) and 32.8 months (range: 8–60) post-HCT at the time of interview. They underwent allogeneic HCT using HLA-matched unrelated donors (n=9), sibling donors (n=3), and cord blood (n=3) as well as autologous HCT (n=3) in the inpatient setting…
“Improving to where?”: Realizing the chronic nature of survivorship
Participants only began to understand the chronic nature of cancer survivorship during the post-treatment period. Early in recovery, participants believed that they would eventually achieve a complete restoration of health and resume their pre-diagnosis lives without major long-term consequences. This was based partly on what they described as hopeful but unrealistic expectations set by their medical teams, who shared stories of “extraordinary” rather than typical cases… Another participant explained how she gradually came to realize that her life was forever changed,..
The discordance between participants’ expectations for a “normal life” and their lived reality was reinforced by interactions with their medical teams. At follow-up appointments, participants explained that health care providers often commented on their progress. One said, “They just tell me, ‘You’re getting better. You’re doing a lot better than you were before. Everything looks good.’” 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%…
My luck is gonna run out”: Bracing for something bad
As time since HCT increased, the focus of participants’ fears shifted from recurrence to HCT-related health risks in the future. They perceived these risks to be “a necessary price to pay for still being alive,” but also a source of never-ending worry. Specifically, participants feared potential late effects of treatment, such as secondary malignancies, cardiovascular and pulmonary toxicities, cataracts, premature ovarian failure and infertility, and shortened life spans…
Discussion
Our findings highlight major gaps and opportunities in survivorship care for AYA cancer survivors who have undergone HCT. “Improving to where?” emerged as an important question as participants pieced together their understanding of HCT-related health risks and their expectations for their futures.
Conclusion
Another priority is the development of resources to support AYA survivors in moving forward, especially managing anxiety about the future, through a lifetime of known health risks. Despite limitations of a small sample size from a single institution, this study enhances our understanding of cancer survivorship among a high-risk subgroup of AYAs. As these AYA HCT survivors continue to live longer, a well-coordinated, proactive approach to address physical and psychosocial long-term and late effects as well as the reality of living with such health risks is imperative…”
Long-term health impacts of hematopoietic stem cell transplantation inform recommendations for follow-up
“However, hematopoietic stem cell transplantation (HSCT) survivors are at risk of developing long-term complications, such as
- endocrinopathies,
- musculoskeletal disorders,
- cardiopulmonary compromise and
- subsequent malignancies.
These complications have a direct impact on the morbidity and mortality experienced by HSCT survivors. Two-thirds of HSCT survivors develop at least one chronic health condition; while a fifth develop severe or life-threatening conditions. HSCT patients who have survived for at least 5 years post-transplantation are at a fourfold to ninefold increased risk of late mortality for as long as 30 years from HSCT, producing an estimated 30% lower life expectancy compared with the general population…
Hematopoietic stem cell transplantation
“Hematopoietic stem-cell transplantation (HSCT) is the transplantation of multipotent hematopoietic stem cells, usually derived from bone marrow, peripheral blood, or umbilical cord blood.[1][2][3] It may be autologous (the patient’s own stem cells are used), allogeneic(the stem cells come from a donor) or syngeneic (from an identical twin).[1][2]
It is most often performed for patients with certain cancers of the blood or bone marrow, such as multiple myeloma or leukemia.[2] In these cases, the recipient’s immune system is usually destroyed with radiation or chemotherapy before the transplantation. Infection and graft-versus-host disease are major complications of allogeneic HSCT.[2]”