Coffee & Community: Cutaneous Lymphoma Conversations

Cutaneous Lymphoma Foundation
  • 5.0 (3)
  • NON-PROFIT

A podcast to bring together the many voices of the cutaneous lymphoma community to share both their experiences and knowledge about cutaneous lymphomas. In each episode, we will dive into the unique stories and perspectives of our guests; exploring cutaneous lymphoma through their lens. No matter who you are, a person living with CL, a healthcare or industry professional, or simply someone interested in learning more - this podcast is for you.

Episodes

  1. Rich M. A Patient's Journey - Living with Cutaneous Lymphoma

    10/14/2025

    Rich M. A Patient's Journey - Living with Cutaneous Lymphoma

    summaryIn this episode of Coffee and Community, Rich shares his personal journey with cutaneous lymphoma, detailing his diagnosis, treatment options, and the importance of building a support system. He emphasizes the need for realistic expectations regarding the disease, the impact of treatment on daily life, and the significance of mental health. Rich also offers valuable advice for newly diagnosed patients, encouraging them to seek help and stay engaged in their lives despite the challenges of a chronic illness. takeaways The importance of having a dedicated healthcare team for managing cutaneous lymphoma.Understanding that cutaneous T-cell lymphoma is a chronic disease, not necessarily curable.The significance of managing expectations regarding treatment and remission.Rich emphasizes the need for mental health support during treatment.Planning for life events is crucial for maintaining mental well-being.Building a support system is essential for coping with chronic illness.Rich advocates for being proactive in seeking help and support.Engaging in advocacy can provide a sense of purpose and community.Finding joy in life outside of the diagnosis is vital for overall health.Chapters 00:00 Introduction to Rich's Journey 01:06 Rich's Diagnosis and Initial Treatment 04:06 Understanding Cutaneous T-Cell Lymphoma 07:38 Navigating Treatment Options 09:09 Impact of Diagnosis on Daily Life 16:48 Planning for Life Beyond Treatment 21:18 The Importance of Mental Health 22:47 Building a Support System 28:22 Advice for Newly Diagnosed Patients 35:19 Advocacy and Giving Back ★ Support this podcast ★

    37 min
  2. Scott M. - A Patient's Journey - Living With Cutaneous Lymphoma

    09/12/2025

    Scott M. - A Patient's Journey - Living With Cutaneous Lymphoma

    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. Takeaways Scott'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.Chapters 00:00 Introduction to Cutaneous Lymphoma Journey 00:58 Scott's Unique Diagnosis Experience 03:05 Navigating Treatment and Recurrences 12:45 Balancing Family Life with Health Challenges 16:44 Finding Support and Community 18:45 Advice for Newly Diagnosed Patients 20:52 Misconceptions About Cutaneous Lymphoma 24:08 Importance of Sharing Stories and Advocacy ★ Support this podcast ★

    30 min
  3. From Data to Impact: GlobalSkin’s GRIDD & PRIDD with Allison FitzGerald

    08/15/2025

    From Data to Impact: GlobalSkin’s GRIDD & PRIDD with Allison FitzGerald

    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 takeaways Global 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.Chapters 00:00 Introduction to Global Skin and GRID Projects 03:00 Understanding PRIDD and Its Importance 05:04 Using the PRIDD App for Patient Empowerment 07:53 Healthcare Provider Engagement and Education 11:31 Future Plans for Global Skin and GRID 14:24 Patient Privacy and Data Security Concerns 18:52 The Importance of Research Participation 22:02 Mental Health and the Burden of Skin Disease ★ Support this podcast ★

    26 min
  4. Setting a New Standard: Pediatric Guidelines for Mycosis Fungoides

    07/10/2025

    Setting a New Standard: Pediatric Guidelines for Mycosis Fungoides

    summary In 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 takeaways Guidelines 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.Chapters 00:00 Introduction to Cutaneous Lymphoma Guidelines 02:27 Understanding Pediatric Cutaneous Lymphoma 04:56 The Process of Developing Guidelines 07:24 Watch and Wait: A Careful Approach 09:50 Treatment Options for Pediatric Patients 12:27 Long-term Management and Prognosis 14:55 Future Research and Global Awareness 17:35 Final Thoughts and Community Support ★ Support this podcast ★

    22 min
  5. Collaboration in Action - Highlights from the T-Cell Workshop

    06/17/2025

    Collaboration in Action - Highlights from the T-Cell Workshop

    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. takeaways The 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.Chapters 00:00 Introduction to T-Cell Workshop 02:07 Understanding the T-Cell Workshop's Purpose 04:40 The Importance of Cutaneous Lymphoma Sessions 06:56 Future of T-Cell Workshops 09:10 Key Discussions and Learnings 11:31 Next Steps and Roadmap for Research 13:57 Patient Involvement and Community Support 16:34 Closing Thoughts and Future Directions ★ Support this podcast ★

    28 min
  6. Harjeet K. - A Patient's Journey - Living with Cutaneous Lymphoma

    06/04/2025

    Harjeet K. - A Patient's Journey - Living with Cutaneous Lymphoma

    summary In 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. takeaways Harjeet 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. Chapters 00:00 Introduction to Harjeet's Journey 01:12 The Diagnosis and Initial Struggles 03:27 Navigating Treatment and Family Dynamics 06:35 Stem Cell Transplant Decision 09:27 The Isolation of Treatment 13:56 Recovery and Reflection 16:35 Milestones and Gratitude 28:56 Navigating Silence and Isolation in Cancer Treatment 31:38 The Power of Sharing: Blogging and Community Support 35:19 Breaking Stigmas: Cancer Myths in the South Asian Community 37:38 Advocacy and Self-Advocacy in Healthcare 39:59 Understanding Early Menopause and Its Impact 40:15 Creating Community: Chai and Hope Initiative www.facebook.com/chaiandhope ★ Support this podcast ★

    46 min
  7. Sabrina F. - A Patient's Journey - Living with Cutaneous Lymphoma

    05/02/2025

    Sabrina F. - A Patient's Journey - Living with Cutaneous Lymphoma

    summaryIn this episode of Coffee and Community, host Holly Priebe speaks with Sabrina, a young adult living with cutaneous lymphoma. Sabrina shares her journey from misdiagnosis to advocacy, discussing the challenges she faced in navigating her diagnosis, treatment, and the importance of community support. She emphasizes the need for self-advocacy, the significance of finding a trusted physician, and the power of sharing experiences to inspire others. Sabrina's story is one of resilience, hope, and the drive to give back to the community that has supported her. takeaways Sabrina was misdiagnosed for six to seven years before receiving the correct diagnosis of cutaneous T-cell lymphoma.Living with cutaneous lymphoma has taught Sabrina that it is a part of her but does not define her.Sabrina faced significant challenges in accessing treatment, including long commutes and delays in care.Family support has been crucial for Sabrina throughout her journey with lymphoma.Sabrina emphasizes the importance of self-advocacy in navigating the healthcare system.Finding a trusted physician is essential for managing chronic conditions like cutaneous lymphoma.Sabrina encourages others to allow themselves to feel their emotions and not always be positive.Community support has been vital for Sabrina, providing a space to share experiences and feelings.Sabrina actively gives back to the cutaneous lymphoma community through advocacy and fundraising.Sabrina believes everything happens for a reason and aims to inspire others facing similar challenges.Chapters00:00 Sabrina's Journey with Cutaneous Lymphoma13:07 Navigating Treatment Challenges22:23 Finding Community and Support28:19 Advice for Newly Diagnosed Patients32:47 The Importance of Advocacy and Giving Back ★ Support this podcast ★

    34 min
  8. Shelia J. - A Patient's Journey - Living With Cutaneous Lymphoma

    04/01/2025

    Shelia J. - A Patient's Journey - Living With Cutaneous Lymphoma

    Summary In this conversation, Sheila J shares her journey with cutaneous T-cell lymphoma, emphasizing the importance of patient advocacy, the power of information, and the need for community support. She discusses her experiences navigating the healthcare system, overcoming fear, and living successfully with her diagnosis. Sheila highlights the significance of building trust with healthcare providers and the role of knowledge in empowering patients to take control of their health. The conversation also touches on the importance of diet, mental health, and the impact of community in managing chronic illness. As promised: to follow Sheila and her amazing cooking show please visit www.gangstagoodieskitchen.com takeaways It's important to be your own advocate in healthcare.Building relationships with compassionate healthcare providers is crucial.Information empowers patients to make informed decisions.Fear can hinder seeking necessary medical help.Community support plays a vital role in coping with illness.Living successfully with a chronic condition is possible.Diet and lifestyle choices can impact health outcomes.Trust in healthcare is essential for effective treatment.Sharing experiences can help others navigate their journeys.Empowerment comes from knowledge and community engagement.00:00 Introduction to Sheila's Journey with Cutaneous Lymphoma 01:26 The Diagnosis Journey: From Rash to Realization 05:42 Coping with the Diagnosis: Embracing Life 08:23 Treatment Decisions: Choosing an Aggressive Approach 13:33 Empowerment Through Knowledge: Advocating for Oneself 18:28 Lifestyle Changes: Nutrition and Wellness 18:29 Community Support: The Importance of Connection 20:08 Empowerment Through Advocacy 20:31 Connecting with Survivors 22:57 The Importance of Information 25:17 Giving Back to the Community 27:50 Addressing Misconceptions 30:08 Living Boldly with a Diagnosis ★ Support this podcast ★

    37 min
  • 8 Episodes

Ratings & Reviews

5
out of 5
3 Ratings

About

A podcast to bring together the many voices of the cutaneous lymphoma community to share both their experiences and knowledge about cutaneous lymphomas. In each episode, we will dive into the unique stories and perspectives of our guests; exploring cutaneous lymphoma through their lens. No matter who you are, a person living with CL, a healthcare or industry professional, or simply someone interested in learning more - this podcast is for you.

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