Survivorship - The Bloodline with Blood Cancer United Podcast

Join us for our special series where we focus on parent caregivers of young adults with cancer.  In this series we will be listening in on a conversation between a social worker and parent caregiver as they navigate the various stages of the young adult cancer journey – diagnosis, treatment, post-treatment survivorship, and the young adult moving back home. 

In this second episode of the series, Sage Bolte, PhD, LCSW, CST, will talk with parent caregiver, Lisa Dominisse about the experience of caregiving for her young adult son, Will, through the treatment stage of Acute Lymphoblastic Leukemia (ALL).

Mentioned on this episode:

• Acute Lymphoblastic Leukemia (ALL)
• I Will Survive: A Viral Tiktok Star’s Journey Through ALL
• Caregiver support 
• Medical Power of Attorney
• Ulman Foundation

Additional LLS Support Resources:

• Information Specialists 
• Clinical Trial Support Center
• Free telephone/web patient programs 
• Free booklets 
• Financial support 
• Online chats 
• LLS Community 
• Support groups 
• Patti Robinson Kaufmann First Connection Program 
• Free Nutrition Consultations 

Support for this episode provided by the Carolan Research Institute.

The post Cancer & Caregiving: Navigating My Young Adult’s Cancer – Treatment first appeared on The Bloodline with Blood Cancer United Podcast.

Join us for our special series where we focus on parent caregivers of young adults with cancer.  In this series we will be listening in on a conversation between a social worker and parent caregiver as they navigate the various stages of the young adult cancer journey – diagnosis, treatment, post-treatment survivorship, and the young adult moving back home. 

In the first episode of this series, Sage Bolte, PhD, LCSW, CST, will talk with parent caregiver, Lisa Dominisse about the experience of caregiving for her young adult son, Will, through the diagnosis stage of Acute Lymphoblastic Leukemia (ALL).

Mentioned on this episode:

• Acute Lymphoblastic Leukemia (ALL)
• I Will Survive: A Viral Tiktok Star’s Journey Through ALL
• Caregiver support 

Additional LLS Support Resources:

• Information Specialists 
• Clinical Trial Support Center
• Free telephone/web patient programs 
• Free booklets 
• Financial support 
• Online chats 
• LLS Community 
• Support groups 
• Patti Robinson Kaufmann First Connection Program 
• Free Nutrition Consultations 

Support for this episode provided by the Carolan Research Institute.

The post Cancer & Caregiving: Navigating My Young Adult’s Cancer – Diagnosis first appeared on The Bloodline With Blood Cancer United Podcast.

Join us as we speak to Nikki Steltenkamp, a young adult, non-Hodgkin lymphoma survivor.  Nikki, an engineer, was 24 years old when she was diagnosed with primary mediastinal B-cell lymphoma.  In this episode, we hear about her intense treatments that finished up just as the world was entering a global pandemic. She also shares her experiences with mental health, fertility preservation and her podcast, That 6-Letter Word.

Mentioned on this episode:

• Primary Mediastinal B-cell Lymphoma (Non-Hodgkin Lymphoma)
• That 6-Letter Word Podcast
• Alessandra episode – That 6-Letter Word Podcast
• Livestrong Fertility
• Sexuality & Young Adult Cancer with Dr. Anne Katz
• CancerCon
• LLS Young Adult Resources

Additional LLS Support Resources:

• Information Specialists
• Clinical Trial Support Center
• Free telephone/web patient programs
• Free booklets
• Financial support
• Online chats
• Caregiver support
• LLS Community
• Support groups
• Patti Robinson Kaufmann First Connection Program
• Free Nutrition Consultations

Support for this episode provided by Karyopharm Therapeutics and Pharmacyclics.

The post Cancer and a Pandemic – A Non-Hodgkin Lymphoma Story first appeared on The Bloodline With Blood Cancer United Podcast.

Join us as we speak with Chelsea Brickham, a transgender model, actress, and professional cosplayer who was diagnosed with Stage II Hodgkin lymphoma in 2013. In this episode, Chelsea shares with us what it was like to go through cancer as a transgender female, the reaction from her family and friends, and how she maintained her femininity during treatment. Since her treatment, she has been active in spreading awareness of LGBTQ+ issues at comic conventions and on social media.

Mentioned on this episode:

• Hodgkin Lymphoma
• Chelsea on TikTok
• CancerCon by Stupid Cancer
• LLS Community
• Comic-Con

Additional LLS Support Resources:

• Information Specialists 
• Young Adult Resources
• Clinical Trial Support Center
• Free telephone/web patient programs 
• Free booklets 
• Financial support 
• Online chats 
• Caregiver support 
• LLS Community 
• Support groups 
• Patti Robinson Kaufmann First Connection Program 
• Free Nutrition Consultations 

Support for this episode provided by Seagen.

The post Making Your Mark: A Transgender Cancer Patient Story first appeared on The Bloodline.

Join us as we speak with David Wallace, a polycythemia vera (PV) patient and advocate.  In this episode, David shares how he struggled to get his diagnosis, advocated to get the treatment he needed, and finally how he found a specialist that was able to treat his PV. He used his struggles to create the website, PV Reporter and nonprofit, MPN Cancer Connection, to educate patients about their disease, help them find resources, and increase awareness of MPNs. David encourages all patients to become their own advocates and to actively participate in their cancer journey.

Mentioned on this episode:

• Polycythemia Vera (PV)
• Myeloproliferative Neoplasms (MPNs)
• PV Reporter
• MPN Cancer Connection

Additional LLS Support Resources:

• Information Specialists 
• Clinical Trial Support Center
• Free telephone/web patient programs 
• Free booklets 
• Financial support 
• Online chats 
• Caregiver support 
• LLS Community 
• Support groups 
• Patti Robinson Kaufmann First Connection Program 
• Free Nutrition Consultations 

Support for this episode provided by Incyte.

The post Pushing for a Diagnosis: A Polycythemia Vera (PV) Story first appeared on The Bloodline with LLS.

Join us as we speak with Jan White, a survivor and thriver of Stage IV Non-Hodgkin Lymphoma.  In this episode, Jan shares her story of how she went from facing immediate paralysis and death to using her experience to advocate for patients. She became a legislative advocate for LLS, started a website to share her experience, and has participated in numerous national conferences in support of cancer patients and healthcare access.   

Mentioned on this episode:

• Non-Hodgkin Lymphoma
• Diffuse Large B-Cell Lymphoma
• Mental Health Resources
• Jan Says Onward
• One More -Ologist Blog Post
• LLS Advocacy
• Join Mobile Action Network: Click Link or Text SPEAK to 69866

Additional LLS Support Resources:

• Information Specialists 
• Clinical Trial Support Center
• Free telephone/web patient programs 
• Free booklets 
• Financial support 
• Online chats 
• Caregiver support 
• LLS Community 
• Support groups 
• Patti Robinson Kaufmann First Connection Program Free Nutrition Consultations

Support for this episode provided by Epizyme, Karyopharm Therapeutics and Pharmacyclics & Janssen Biotech.

The post Bring It On: From Lymphoma to Advocacy first appeared on The Bloodline with LLS.

Join us as we speak to William Yank, a 23-year-old, three-time Acute Lymphoblastic Leukemia (ALL) survivor. In this episode, we hear about the variety of treatments William went through, his relapses and then subsequent stem cell transplant. Now one year out of transplant, he shares about his post-cancer journey – going viral on TikTok, becoming the face of the LLS Giving Tuesday campaign and then starting a podcast with another Young Adult Cancer survivor.

Mentioned on this episode:

• Acute Lymphoblastic Leukemia
• CancerCon by Stupid Cancer
• ClonoSeq®
• CAR T-cell Therapy
• Stem Cell Transplant
• The Illest. Podcast
• William’s TikTok page
• Family Service Society, Inc.
• LLS Young Adult Resources

Additional LLS Support Resources:

• Information Specialists
• Clinical Trial Support Center
• Free telephone/web patient programs
• Free booklets
• Financial support
• Online chats
• Caregiver support
• LLS Community
• Support groups
• Patti Robinson Kaufmann First Connection Program
• Free Nutrition Consultations

Support for this episode provided by Amgen Inc. and Jazz Pharmaceuticals.

The post I Will Survive: A Viral TikTok Star’s Journey through Acute Lymphoblastic Leukemia (ALL) first appeared on The Bloodline with LLS.

Join us as we start a brand new series, Patient-Doctor Perspectives, where we explore a diagnosis from the view of a patient and doctor. In this episode, we speak to Ashley Cámara, a Myelodysplastic Syndromes (MDS) survivor and advocate and Dr. Lucy Godley from The University of Chicago Medicine. Ashley shares her story of having two MDS diagnoses in her family – first her brother and then herself. Dr. Godley then delves deeper into inherited myeloid malignancies and how genetic links may lead to preventative treatment options. 

Mentioned

• Myelodysplastic Sydromes (MDS)
• Stem Cell Transplantation
• Hereditary Myeloid Malignancies – University of Chicago Medicine
• Dr. Lucy Godly Contact
• Young Adult Resources

Additional LLS Support Resources:

• Information Specialists
• Free telephone/web patient programs
• Free booklets
• Financial support
• Online chats
• Caregiver support
• LLS Community
• Support groups
• Patti Robinson Kaufmann First Connection ProgramFree Nutrition Consultations

Support for this episode provided by Taiho Oncology.

The post Patient-Doctor Perspectives: Hereditary Myelodysplastic Syndromes (MDS) first appeared on The Bloodline with LLS.

Join us as we report from the 2020 Virtual CancerCon and speak to Kyle Benner, a young adult survivor of Acute Lymphoblastic Leukemia (ALL), and Nikki Yuill, a social worker with the LLS Information Resource Center. In this episode, we discuss young adult cancer (15-39 yrs) and what happens from diagnosis through survivorship. Learn about the unique issues that young adults face and how LLS is here to help them through.

Mentioned on this episode:

• Acute Lymphomblastic Leukemia (ALL)
• Communicating with your Healthcare Team
• CancerCon
• Stupid Cancer
• Young Adult Chat
• More Young Adult Specific Resources
• Bone Marrow Transplant

Additional LLS Support Resources:

• Information Specialists
• Free telephone/web patient programs
• Free booklets
• Financial support
• Online chats
• Caregiver support
• LLS Community
• Support groups
• Patti Robinson Kaufmann First Connection ProgramFree Nutrition Consultations

The post I Am a Young Adult With Cancer…Now What? first appeared on The Bloodline with LLS.

Join us as we speak to Ola Ojewumi, a patient and health advocate with Post-Transplant Lymphoproliferative Disorder (PTLD), a type of Non-Hodgkin Lymphoma. In this episode, Ola tells us about the difficulties she has faced as a Black disabled woman with chronic pain. She shares her experiences with racism and inequities in healthcare and how she has learned to advocate for herself and others.

Mentioned on this episode:

• Post-Transplant Lymphoproliferative Disorder (PTLD)
• LLS Health Manager App
• Racial Bias in Chronic Pain Study
• Ola Speaking to Congress
• Project ASCEND
• #PatientsAreNotFaking

Additional LLS Support Resources:

• Information Specialists
• Free telephone/web patient programs
• Free booklets
• Financial support
• Online chats
• Caregiver support
• LLS Community
• Support groups
• Patti Robinson Kaufmann First Connection ProgramFree Nutrition Consultations

The post Facing Racial Disparities as a Black Disabled Patient first appeared on The Bloodline with LLS.