Today hear from Julia Oppman, a two time acute myeloid leukemia survivor (AML)and patient advocate from Northeast Ohio. Julia shares how her cancer journey began in 2018 when she was 36 years-old and raising two young children. She initially blamed her extreme exhaustion on motherhood and work. After months of illness and repeated infections, she was diagnosed with AML. The diagnosis came unexpectedly by phone and was followed almost immediately by a 30 day hospital stay for induction chemotherapy.
Julia later underwent minimal residual disease (MRD) testing. Eventually, the numbers increased and she relapsed in 2020. She was told that a bone marrow transplant was now necessary to save her life. The transplant took place during the COVID pandemic, creating additional challenges for Julia and her family. Hospital visitor restrictions led them to relocate so she could receive treatment at a hospital that allowed support people. Her husband, mother, and children became an essential part of her care during the transplant and the critical first 100 days afterward.
Following transplant, Julia developed chronic Graft Versus Host Disease. She describes it as one of the most challenging parts of her experience because it can affect multiple areas of the body at different times. Her symptoms have required visits with many specialists, and she has struggled to find treatments that work for her. Insurance denials have created another barrier, especially when doctors want to consider medications that are not specifically labeled for Graft Versus Host Disease.
Julia has become a strong advocate for herself and others. She sought evaluation at the National Institutes of Health (NIH) and plans to pursue additional expertise at Memorial Sloan Kettering Cancer Center in New York. She encourages patients to look for support groups, connect with others who have similar experiences, and continue searching for medical resources when existing options are not enough.
One of Julia's biggest sources of purpose is her 'Share the Love' initiative. What began as Valentine's Day gifts for patients on her hospital floor has grown into an annual effort serving several hospitals, including a children's hospital. Her children now help create handmade Valentines for the packages.
Julia also shares the unexpected birth of her youngest child after being told she would not be able to have more children. Through cancer, transplant, chronic GVHD, advocacy, motherhood, and giving back, she continues looking for what she calls the silver lining. Her message is clear. Life after transplant is not always simple or easy. Support often means showing up, listening, helping with every day tasks, and allowing patients to be honest about what they are experiencing.
If you want to help Julia's Share The Love initiative, you can reach her at: jewelsjean@hotmail.com
Thank you to our Season 21 Sponsors:
Incyte: https://incyte.com/
Sanofi: https://www.sanofi.com/
Additional Resources:
National Institutes of Health (NIH): https://www.nih.gov/
GVHD Alliance: https://www.gvhdalliance.org/
NeedyMeds: https://www.needymeds.org
(00:00) Introduction
(01:03) How Julia's cancer journey began
(06:04) Relapsing during the COVID pandemic
(07:18) Facing a bone marrow transplant in 2020
(08:09) Relocating the family and finding caregiver support
(11:03) Creating the Share the Love Valentine's initiative
(13:31) Living with chronic graft versus host disease
(15:51) Resources for medication assistance
(16:08) Seeking answers at NIH and Memorial Sloan Kettering
(19:58) Support groups and learning from other patients
(21:14) An unexpected pregnancy after transplant
(23:31) Insurance barriers and financial toxicity
(24:37) Putting the broken pieces of life back together
(27:05) How friends can truly support patients
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This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment. It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.
The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK. Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.
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