Coffee & Community: Cutaneous Lymphoma Conversations

SummaryIn this episode of Coffee and Community, Scott shares his personal journey with cutaneous lymphoma, detailing his diagnosis, treatment, and the emotional impact of living with a chronic condition. He discusses the importance of finding specialists, managing family life, and the support he found through the Cutaneous Lymphoma Foundation. Scott emphasizes the need for self-advocacy and the value of community in navigating the challenges of lymphoma.TakeawaysScott's journey with cutaneous lymphoma began with a surprising diagnosis.Understanding cutaneous lymphoma can be challenging for both patients and their families.The emotional impact of living with a chronic condition is significant.Finding a specialist can provide confidence and clarity in treatment options.Managing family life while dealing with a health diagnosis is complex.Support groups and community resources are invaluable for patients.Self-advocacy is crucial in navigating healthcare systems.Misconceptions about skin cancer can lead to misunderstandings about lymphoma.Living with cutaneous lymphoma requires ongoing education and awareness.Chapters00:00 Introduction to Cutaneous Lymphoma Journey00:58 Scott's Unique Diagnosis Experience03:05 Navigating Treatment and Recurrences12:45 Balancing Family Life with Health Challenges16:44 Finding Support and Community18:45 Advice for Newly Diagnosed Patients20:52 Misconceptions About Cutaneous Lymphoma24:08 Importance of Sharing Stories and Advocacy ★ Support this podcast ★

summaryIn this episode of Coffee and Community, host Holly Priebe speaks with Allison Fitzgerald, Director of Operations for GlobalSkin, about the GRIDD and PRIDD projects aimed at improving quality of life for individuals living with skin diseases, including cutaneous lymphoma. They discuss the importance of patient-centric data, the development of an app for tracking the impact of skin diseases, and the future plans for research and advocacy. The conversation also addresses patient privacy concerns and the significant role of mental health in managing skin conditions.To learn more about the CLFoundation's participation in GlobalSkin's GRIDD & PRIDD projects please visit our website at GlobalSkin | Cutaneous Lymphoma FoundationTo review the seven publications produced and published by GlobalSkin visit their website at Resources & PublicationsTo download and begin using the PRIDD app visit the PRIDD website at Download App | PRIDD takeawaysGlobal Skin aims to turn qualitative data into quantitative data.The GRIDD project focuses on understanding the burden of dermatological diseases.PRIDD is a new measure that includes patient input.Patients need to communicate their full experience beyond physical symptoms.The PRIDD app allows patients to track their health and discuss it with providers.Healthcare providers need to be educated about the PRIDD app.Future research will utilize GRIDD and PRIDD data for advocacy.Mental health is a significant concern for patients with skin diseases.Patient participation in research is crucial for meaningful outcomes.Data security and privacy are prioritized in the app's design.Chapters00:00 Introduction to Global Skin and GRID Projects03:00 Understanding PRIDD and Its Importance05:04 Using the PRIDD App for Patient Empowerment07:53 Healthcare Provider Engagement and Education11:31 Future Plans for Global Skin and GRID14:24 Patient Privacy and Data Security Concerns18:52 The Importance of Research Participation22:02 Mental Health and the Burden of Skin Disease ★ Support this podcast ★

summaryIn this episode of Coffee and Community, the Cutaneous Lymphoma Foundation discusses the newly developed guidelines for pediatric cutaneous lymphoma with Professor Chalid Assaf. The conversation covers the importance of these guidelines, the unique presentation of cutaneous lymphoma in children, the development process of the guidelines, treatment strategies including the watch and wait approach, and the significance of ongoing research. The episode emphasizes the need for reassurance for parents and highlights the collaborative efforts in treating this rare disease.To review and learn more about the guidelines please visit our website at Pediatric Guidelines for Mycosis Fungoides | Cutaneous Lymphoma Foundation takeawaysGuidelines are essential for doctors treating cutaneous lymphoma.Children present differently than adults with cutaneous lymphoma.The development of guidelines took about three and a half to four years.Watch and wait is a strategy integrated into treatment guidelines.Phototherapy is the first-line treatment for early-stage mycosis in children.Ongoing research is crucial for understanding pediatric cutaneous lymphoma.Parents should be reassured about treatment possibilities and outcomes.Collaboration among experts is vital in rare disease treatment.The guidelines represent a significant step forward in pediatric care.Chapters00:00 Introduction to Cutaneous Lymphoma Guidelines02:27 Understanding Pediatric Cutaneous Lymphoma04:56 The Process of Developing Guidelines07:24 Watch and Wait: A Careful Approach09:50 Treatment Options for Pediatric Patients12:27 Long-term Management and Prognosis14:55 Future Research and Global Awareness17:35 Final Thoughts and Community Support ★ Support this podcast ★

summaryIn this conversation, Dr. Steven Horwitz discusses the recent Lymphoma Research Foundation's T-Cell Workshop, emphasizing the importance of collaboration among experts in the field. The workshop aimed to address the unique challenges of T-cell Lymphomas including cutaneous lymphomas and explore advancements in research and therapy. Dr. Horwitz highlights the need for ongoing workshops, the significance of understanding the biology of T-cell lymphomas, and the role of the community in supporting research efforts. He expresses hope for future advancements and the importance of patient involvement in clinical trials and advocacy for rare diseases. The Cutaneous Lymphoma Foundation was proud partner bringing the cutaneous lymphoma sessions to the workshop.takeawaysThe T-cell workshop aims to enhance collaboration among experts.Cutaneous lymphoma sessions were added to address specific needs.Future workshops are planned to continue the momentum.Understanding the biology of T-cell lymphomas is crucial for therapy development.International collaboration is essential for advancing research.Pathology and biology discussions are key to understanding T-cell lymphomas.New therapies are being explored based on biological insights.Community involvement is vital for research progress.Patients can contribute to advancing research.Advocacy for rare diseases is important for funding and support.Chapters00:00 Introduction to T-Cell Workshop02:07 Understanding the T-Cell Workshop's Purpose04:40 The Importance of Cutaneous Lymphoma Sessions06:56 Future of T-Cell Workshops09:10 Key Discussions and Learnings11:31 Next Steps and Roadmap for Research13:57 Patient Involvement and Community Support16:34 Closing Thoughts and Future Directions ★ Support this podcast ★

summaryIn this episode, Harjeet K. shares her profound journey with cutaneous lymphoma, detailing her diagnosis, treatment, and the emotional challenges she faced. From navigating the healthcare system as an immigrant to advocating for awareness in the South Asian community, Harjeet's story is one of resilience and hope. She emphasizes the importance of communication, support networks, and breaking stigmas surrounding cancer, particularly in her cultural context. Harjeet also discusses the impact of her treatment on her fertility and mental health, highlighting the need for awareness and education in these areas.takeawaysHarjeet was diagnosed with stage four cutaneous lymphoma at age 32.The diagnosis process was lengthy and filled with uncertainty.Isolation during treatment was a significant emotional challenge.Harjeet's brother was a perfect match for her stem cell transplant.Communication about cancer is often lacking in the South Asian community.Harjeet created a Facebook support group called Chai and Hope for South Asian cancer patients. www.facebook.com/chaiandhopeAdvocacy for health awareness is crucial for patients and their families.Fertility issues and menopause are often overlooked in cancer treatment discussions.Harjeet emphasizes the importance of asking for help and support.Sharing her story has helped others feel less isolated in their cancer journeys.Chapters00:00 Introduction to Harjeet's Journey01:12 The Diagnosis and Initial Struggles03:27 Navigating Treatment and Family Dynamics06:35 Stem Cell Transplant Decision09:27 The Isolation of Treatment13:56 Recovery and Reflection16:35 Milestones and Gratitude28:56 Navigating Silence and Isolation in Cancer Treatment31:38 The Power of Sharing: Blogging and Community Support35:19 Breaking Stigmas: Cancer Myths in the South Asian Community37:38 Advocacy and Self-Advocacy in Healthcare39:59 Understanding Early Menopause and Its Impact40:15 Creating Community: Chai and Hope Initiative www.facebook.com/chaiandhope ★ Support this podcast ★