Literature
Informed Research
There is no substitute for knowledge. If you read the following pieces of literature (below) and begin to understand the science of your disease you will very likely end up knowing as much or more about SEF as most practicing oncologists do. Practically, they do not have enough time in the day to deeply understand the specifics of each cancer they must treat on a day-to-day basis. You are your best advocate. Through your knowledge and understanding of your disease, you can direct your clinical decision-making with your oncologist in a way that you would not have imagined at the beginning. I have linked below many of the papers I have read in order to better understand cancer, sarcoma, SEF, immunotherapy and targeted therapies. If you find a particular paper of interest to your specific case, do not be afraid to reach out to the authors. They are real people — people who care about the subject matter enough to put their life’s work into it in some cases. They can help! I made many connections through this method that proved helpful in our search for the next best treatment for Rucker. Also, if you read a portion of a paper that interests you, look up the sources (documented throughout the footnotes). Then read that source material . . . and so on. This practice will take you down many avenues worth exploring and will further your knowledge of the subject.
As a side note, these pieces of literature are not always free. If you find an article that requires payment in order to access the full document, first try copying and pasting the title into Google Scholar to see if it may be available for free somewhere else. You also may need to ask your doctor or anyone who works for a medical organization to use their subscription to download them for you. And, if you are not afraid of breaking the rules to help yourself or your child (which I was certainly not), then google “Sci-Hub” and go to it to find free copies of medical literature (they claim to “remove all barriers in the way of science”). Knowledge is power. The only way to properly advocate for yourself or your child is to learn as much as you can about their disease.
SEF
Clinical Benefit From Immune Checkpoint Blockade in Sclerosing Epithelioid Fibrosarcoma: A Translocation-Associated Sarcoma
https://ascopubs.org/doi/abs/10.1200/PO.20.00201
In-depth Genetic Analysis of Sclerosing Epithelioid Fibrosarcoma Reveals Recurrent Genomic Alterations and Potential Treatment Targets
https://pubmed.ncbi.nlm.nih.gov/28939748/
Sclerosing Epithelioid Fibrosarcoma A Distinct Sarcoma With Aggressive Features
Sclerosing Epithelioid Fibrosarcoma of the Bone: A Case Report of High Resistance to Chemotherapy and a Survey of the Literature
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2853979/
Clinical Characteristics and efficacy of chemotherapy in sclerosing epithelioid fibrosarcoma
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6132781/
Sclerosing Epithelioid Fibrosarcoma: Case Presentation and a Systematic Review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2384045/
Sclerosing Epithelioid Fibrosarcoma of the Bone With Rare EWSR1-CREB3L3 Translocation Driving Upregulation of the PI3K/mTOR Signaling Pathway
https://pubmed.ncbi.nlm.nih.gov/31335288/
Clinical and molecular characterization of primary sclerosing epithelioid fibrosarcoma of bone and review of the literature
https://pubmed.ncbi.nlm.nih.gov/31675134/
Primary Renal Sclerosing Epithelioid Fibrosarcoma: Report of Two Cases with EWSR1-CREB3L1 Gene Fusion
Sarcoma
Advances in sarcoma diagnostics and treatment
https://pubmed.ncbi.nlm.nih.gov/27732970/
Immunotherapy for Soft Tissue Sarcoma: Tomorrow Is Only a
Day Away
https://pubmed.ncbi.nlm.nih.gov/27249707/
Precision Oncology in Sarcomas: Divide
and Conquer
https://ascopubs.org/doi/10.1200/po.18.00247
Emerging trends in immunotherapy for
pediatric sarcomas
https://jhoonline.biomedcentral.com/articles/10.1186/s13045-019-0756-z
Therapeutic Targets for Bone and
Soft-Tissue Sarcomas
Immunotherapy/Targeted Therapy:
Title: CAR T cells targeting B7-H3, a Pan-Cancer Antigen, Demonstrate
Potent Preclinical Activity Against Pediatric Solid Tumors and Brain Tumors
https://clincancerres.aacrjournals.org/content/25/8/2560
A CAR T-Cell Therapy for Multiple Childhood Cancers?
CAR T Cells in Solid Tumors: Blueprints for Building Effective Therapies
https://www.frontiersin.org/articles/10.3389/fimmu.2018.01740/full
Rationale and Emerging Strategies for Immune Checkpoint Blockade In Soft Tissue Sarcoma
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6215523/
Chimeric antigen receptor T (CAR-T) cell immunotherapy for sarcomas:
From mechanisms to potential clinical applications
https://pubmed.ncbi.nlm.nih.gov/31794912/
IGF1R- and ROR1-Specific CAR T Cells as a
Potential Therapy for High Risk Sarcomas
https://pubmed.ncbi.nlm.nih.gov/26173023/
Antitumor Activity Associated with
Prolonged Persistence of Adoptively
Transferred NY-ESO-1c259T Cells in
Synovial Sarcoma
https://pubmed.ncbi.nlm.nih.gov/29891538/
Safety of Targeting ROR1 in Primates with
Chimeric Antigen Receptor–Modified T Cells
https://pubmed.ncbi.nlm.nih.gov/25355068/
Anti-CD24 nano-targeted delivery of docetaxel for the treatment of
prostate cancer
https://pubmed.ncbi.nlm.nih.gov/27565690/
Characterization of a Novel Third-Generation
Anti-CD24-CAR against Ovarian Cancer
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6387114/
Identification of CD24 as a marker for
tumorigenesis of melanoma
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6003289/
Activation of the p53 pathway by small-molecule-induced MDM2 and MDMX dimerization
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3406834/
Identification of flubendazole as potential anti-neuroblastoma compound in a large cell line screen
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