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Marrow Masters

著者: The National Bone Marrow Transplant Link
  • サマリー

  • This podcast series educate patients, caregivers, and health care professionals regarding important topics as they relate to bone marrow/stem cell transplant and Car-T cellular therapy. Our newest installment, Season 12, answers the critical question of "I'm home, now what?" Season 11 covers survivors who are thriving. Season 10 covers Graft Versus Host Disease (GVHD) focusing on hope and inspiration. Season 9 covers incredible tips before during and after transplant--things folks wish they had known. Season 8 covered All Things Related to Clinical Trials while Season 7 and 6 focused on important topics related to Graft Versus Host Disease, (GVHD.) In earlier seasons, we covered all things survivorship (Season 5), the caregiver perspective (Season 4), the patient perspective (Season 3), busting marrow myths (Season 2), and chronic GVHD (Season 1). With more than 24,000 downloads today, we are so thrilled to offer these pods.
    2024 nbmtLINK
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エピソード
  • Licensed clinical oncology social worker Ailey Armstrong
    2023/12/18
    **Disclaimer: The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. Any listed resources are not intended to be endorsements.**Ailey Armstrong, MSW, LICSW is a licensed clinical oncology social worker at Fred Hutchinson Cancer Center in Seattle. Today, she shares her insights on transitioning home post-transplant. She emphasizes the importance of continued caregiving support and suggests patients assess their needs in various aspects like medication management, meals, and transportation. Ailey advises making a list of needs and identifying which can be managed independently and which require external support, like arranging rides to medical appointments.Ailey highlights the role of social workers and patient navigators in providing resources and support, including financial assistance and help in returning to work. She also encourages tapping into a broader network beyond the core caregiver team, involving neighbors, church members, and extended family for support.On the emotional side, it's normal to feel a range of emotions from relief to anxiety and fear. The transition brings concerns about managing without the transplant team, handling post-transplant symptoms, and adapting to home life. She addresses the feelings of frustration, anger, and grief that stem from changes in lifestyle and identity post-transplant.To manage these emotions, Ailey recommends acknowledging and processing them rather than avoiding them. She suggests practical strategies like using lists, calendars, and apps to manage medications and appointments. Emphasizing the importance of staying present, she introduces the "dropping anchor" exercise to ground oneself in the present, focusing on immediate sensations and surroundings.Ailey stresses the importance of open communication with medical teams post-discharge, ensuring patients have all necessary contact information. She discusses the normality of mixed emotions upon returning home and the need for time to readjust to family dynamics and home responsibilities.Delving deeper into psychosocial support, Ailey advises discussing mood and sleep changes with medical providers, as these are treatable. She emphasizes the significance of self-compassion and kindness, urging patients to treat themselves as they would a dear friend. Additionally, she suggests having structured daily routines incorporating essential activities and enjoyable tasks to provide a sense of normalcy and control.In conclusion, Ailey underscores that difficult days are inevitable and recommends focusing on wellness. She advises preparing a list of activities and thoughts that induce calmness. Her final message emphasizes self-compassion, encouraging patients to treat themselves with the same kindness and patience they would offer to a loved one.More:Medisafe App for prescription management: https://www.medisafe.com/National Suicide and Crisis Hotline: 988 (three digit phone number)Book: It's OK That You're Not OK, by Megan Devine on Amazon:https://www.amazon.com/Its-OK-That-Youre-Not-OK-audiobook/dp/B075QP5SGH/Book: When Life Hits Hard, by Russ Harris: https://www.amazon.com/When-Life-Hits-Hard-Acceptance/dp/1684039010Book: The Cancer Companion: How to Navigate Your Way from Diagnosis to Treatment and Beyond, by Dr. Toni Lindsay (Parts 2 and 4 in particular): https://www.amazon.com/Cancer-Companion-Navigate-Diagnosis-Treatment/dp/0369366956Other ResourcesNational Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINKnbmtLINK YouTube Page can be found by clicking here.Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi  https://www.sanofi.com/
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    33 分
  • Survivor, Speaker, and Author Gregory Proctor
    2023/12/18

    **Disclaimer: The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. Any listed resources are not intended to be endorsements.**

    In today's episode of our podcast, we had the privilege of speaking with Gregory Proctor, a 53-year-old multiple myeloma survivor from San Antonio, Texas. Gregory's story is a testament to resilience and hope, as he details his journey through a challenging battle with cancer, starting from his diagnosis in July 2022, to his stem cell transplant, and his ongoing recovery. 

    Gregory shares the shock and fear he experienced when first diagnosed, particularly when advised to "get his affairs in order." He describes the mental and emotional toll of dealing with such a diagnosis, emphasizing the importance of mental strength and determination in facing the disease. His story took a dramatic turn with his return to the hospital just 14 hours after being discharged, due to a dangerously high fever. This event marked the beginning of a challenging path to recovery, filled with physical weakness and stringent precautions to protect his compromised immune system.

    A significant part of Gregory's conversation focuses on the emotional challenges of coping with cancer. He talks about the initial period of depression and the process of accepting his new life and journey. This acceptance was crucial in shifting his mindset from despair to determination and finding a renewed sense of purpose.

    Financial toxicity was another critical topic Gregory touches upon. He sheds light on the staggering costs of cancer treatment and the importance of understanding insurance policies and seeking additional resources. His experience highlights the often-overlooked financial burden of battling cancer, which can be as devastating as the disease itself.

    Gregory also discussed the social isolation he experienced, exacerbated by the pandemic and his condition. He highlighted the changes he had to make in his daily routine, like visiting grocery stores during low-peak hours and carefully vetting his social interactions to avoid infections.

    On a positive note, Gregory spoke about regaining his strength and the incremental progress he made in his physical recovery. He emphasized the mental aspect of this journey, pushing boundaries to rebuild his strength gradually. His story is inspiring, showing that persistence and small, consistent efforts can lead to significant improvements over time.

    Gregory's approach to medication management was unconventional yet effective for him. He advocated for a treatment plan that made sense to him and allowed him to maintain some normalcy in his life. This part of the conversation underscored the importance of patient advocacy and being an active participant in one's treatment plan.

    As for his current life, Gregory is channeling his experiences into positive endeavors. He just published his book, titled Faith, Strength, and Courage, and is actively involved in speaking engagements and consultancy work. His story is a beacon of hope for many, illustrating how one can turn adversity into an opportunity to inspire and help others.

    Gregory concluded the podcast with valuable advice for those facing tough days. He stressed the importance of never giving up, finding strength in faith, and realizing that you're not alone in your journey. His message is clear: cancer may be a part of your life, but it doesn't define your entire existence.

    Greg's Book: Faith, Strength, and Courage on Amazon: https://www.amazon.com/FAITH-STRENGTH-COURAGE-Overcoming-Adversity/dp/760919834X/

    Other Resources

    National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

    nbmtLINK Website: https://www.nbmtlink.org/

    nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

    nbmtLINK YouTube Page can be found by clicking here.

    Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi  https://www.sanofi.com/

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    34 分
  • Multiple Myeloma Survivor Diane Raab
    2023/12/18

    **Disclaimer: The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. Any listed resources are not intended to be endorsements.**

    Today we welcome Diane Raab, a remarkable survivor of multiple myeloma and a licensed clinical social worker from Cheboygan, Michigan. Diane shares her personal journey through the challenging path of cancer treatment, sprinkling her narrative with both professional insights and deeply personal experiences.

    Diane's story begins with the diagnosis of multiple myeloma following persistent back pain. She recounts the rigorous process of diagnosis, which led to seven months of chemotherapy in preparation for a stem cell transplant. She remembers the steroids turned her into an 'Energizer Bunny,' enhancing her productivity during treatment.

    The focus then shifts to her transplant experience at the University of Michigan. Diane praises the comprehensive and detailed guide provided by the hospital, which helped alleviate much of her anxiety. She describes the fascinating process of stem cell harvesting and the convenience of using a port for medical procedures. However, the journey was not without its hardships, as Diane lost her hair due to the intensive chemotherapy, a side effect handled with grace and humor.

    Post-transplant, Diane faced numerous challenges in adjusting to everyday life, from being in a highly protected hospital environment to navigating the risks of infection at home. She had to adopt new hygiene practices, including daily showers with clean towels and washcloths, and careful food preparation to avoid infection risks. Diane also shares the emotional toll of not being able to socialize freely and the adjustments she made to stay connected with friends and family.

    Peggy and Diane delve into the physical changes Diane experienced after her transplant, particularly the fatigue and the need to listen to her body's demands for rest. Diane also touches on the mental aspects of coping with cancer, emphasizing the importance of avoiding negative online forums and focusing on reputable sources for information.

    Diane candidly discusses the challenges of acknowledging her cancer and the psychological impact of the diagnosis. She stresses the importance of therapy and talking about one's experiences, sharing personal anecdotes that highlight the therapeutic value of open communication.

    As the episode concludes, Diane offers invaluable advice for others going through similar experiences. She emphasizes the importance of following medical guidance, staying safe, and finding value in everyday life, relationships, and the simple things. Her story is a testament to resilience, adaptability, and the power of a positive outlook in the face of adversity.

    Other Resources:

    National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

    nbmtLINK Website: https://www.nbmtlink.org/

    nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

    nbmtLINK YouTube Page can be found by clicking here.

    Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi  https://www.sanofi.com/

    続きを読む 一部表示
    32 分

あらすじ・解説

This podcast series educate patients, caregivers, and health care professionals regarding important topics as they relate to bone marrow/stem cell transplant and Car-T cellular therapy. Our newest installment, Season 12, answers the critical question of "I'm home, now what?" Season 11 covers survivors who are thriving. Season 10 covers Graft Versus Host Disease (GVHD) focusing on hope and inspiration. Season 9 covers incredible tips before during and after transplant--things folks wish they had known. Season 8 covered All Things Related to Clinical Trials while Season 7 and 6 focused on important topics related to Graft Versus Host Disease, (GVHD.) In earlier seasons, we covered all things survivorship (Season 5), the caregiver perspective (Season 4), the patient perspective (Season 3), busting marrow myths (Season 2), and chronic GVHD (Season 1). With more than 24,000 downloads today, we are so thrilled to offer these pods.
2024 nbmtLINK

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