This episode features Anna DeSalvo, MS, CGC , who is a Patient Education Specialist with the Jason Carter Clinical Trials Program (JCCTP ) operated by Be The Match . In addition to keeping the JCCTP clinical trial search tool up-to-date and creating educational content, Anna regularly assists patients in any part of the clinical trial search process. Time to bust another myth, and maybe save some lives. Did you know that by the time a treatment gets to the point where it’s a clinical trial bein...
Nov 25, 2019•17 min•Season 2Ep. 6
Palliative care does not mean hospice: it is illness treatment and it improves function. Join Shirley Otis-Green , an expert in this subject as she shares her wealth of knowledge and a plethora of resources. This is so important for people to understand. Quality of life is affected greatly for the better when patients and their families understand palliative care and its true purpose. A national expert, Dr. Otis-Green is quite frankly an incredible resource. Great organization to check out: The...
Nov 25, 2019•19 min•Season 2Ep. 5
This episode will set the record straight regarding cGVHD. Most cases will subside in 3-5 years. You won't want to miss this one from one of the world's leading experts on cGVHD. Dr. Steve Pavletic is an incredible resource for folks with cGVHD. Dr. Pavletic leads a chronic GVHD clinic and natural history study at the National Institutes of Health . Learn more about cGVHD, treatment updates, and his incredible opportunity for those who qualify. Dr. Pavletic will also speak about steroids, the lo...
Nov 25, 2019•38 min•Season 2Ep. 4
This episode features Dr. Effie Petersdorf , a member of the Clinical Research Division, Fred Hutchinson Cancer Research Center ; Professor, Division of Oncology and Department of Medicine, University of Washington School of Medicine, and Attending Physician, Seattle Cancer Care Alliance . This episode will focus on the many transplant options available to people, whether it is a family member or a non-family member. Listeners will learn more about how this all works. It will give hope to so man...
Nov 25, 2019•20 min•Season 2Ep. 3
Time to bust another myth regarding age and transplant. Listeners will be relieved to hear about older patients receiving life-saving transplants and most often thriving post-transplant. The likelihood of being diagnosed with a hematologic malignancy (blood cancers: most leukemias, lymphoma, multiple myeloma, etc.) increases substantially above the age of 60. In the past (more than 20 years ago), blood stem cell transplantation was mostly available to younger patients. However, that is NOT the ...
Nov 25, 2019•26 min•Season 2Ep. 2
This episode will focus on CAR T-cell Therapy. Dr. H. Kent Holland , is board certified in the subspecialties of oncology and hematology. He is Medical Director of the Blood and Marrow Transplant Program at Northside Hospital and Co-Director of the Northside Hospital Stem Cell Processing Laboratory. Dr. Holland is also a Northside Hospital Leukemia Program physician. An expert on this topic, Dr. Holland will share how it works, who is eligible, and much more. CAR T-cell Therapy is a game changer...
Nov 25, 2019•16 min•Season 2Ep. 1
Whether it's CAR -T questions, a need for a better understanding of clinical trials, cGVHD concerns, relationship/love issues, donor/age options or the truth on palliative care, we got you covered. Our interviews with the nation's leading doctors, social workers, and health care professionals will feature advice and expertise sure to help Bust Marrow Myths! For additional resources from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268. This sea...
Nov 25, 2019•1 min•Season 2Ep. 8
• Thriving to find the best version of you after transplant • Find ways to reconnect with the world around you • It is not easy: it can be a slow process, your personal earthquake • Increased tolerance for the unknown • Exhaustion • Losses along the way • Patience is important: a marathon not a sprint • Look for ways to be even just a little bit stronger each day • Energy issues • Chemotherapy • Your support system • Emotional aspects including depression • Fatigue examined: what time of the day...
Jul 30, 2019•31 min•Season 1Ep. 6
• Diagnosed when 20 years old, Sharde has had many issues with cGVHD • Sharde shares her coping mechanisms, tips and challenges • Fatigue and pacing yourself • How Sharde is living life to the fullest even with cGVHD. • Importance of seeing a specialized doctor when you are not sure if it is cGVHD. • Sharde’s incredible mom, caregiver/support system • Remembering how far she has come and living life in the present day. • How Sharde has accepted that this is where I am and I am alive. • Would Sha...
Jul 30, 2019•21 min•Season 1Ep. 5
• Viki’s presentation will cover the following organ systems re: cGVHD. Skin, Fingernails: • If you do not feel greasy from the lotions you apply, you are not using enough! • Fun facts about the sun—we all need some! • You did not go through a transplant to sit at home in the house—just do not burn. A sunburn is your enemy. • Fingernail care: keep them filed and avoid gels nail polishes • Steroids and bruising—what to look for • Fish oil explained Joints: • Edema GVHD explained • Cramps: this is...
Jul 30, 2019•44 min•Season 1Ep. 4
• I’m Home: What do I do now regarding seeing a doctor. • Be your own advocate • Notice the little things, over report symptoms to your center • Forever fatigue covered: (Learn more about Light Therapy by visiting • Your New Normal: Check out the LINK's award winning DVD. • Finding your way: new crossroads • Embrace living • The painfulness of cGVHD discussed • Photopheresis, ECP: Click here for more on photophersis • Your caregiver: the forgotten one • Meditation and mindfulness • Depression an...
Jul 30, 2019•15 min•Season 1Ep. 3
• Medications/options and steroids • First treatment: steroids and its side effects- muscle weakness, diabetes, etc. • What is on the horizon: treatment options explained • Extracorporeal photopheresis (ECP), a cutting-edge, nonsurgical procedure to treat graft-versus-host disease explained. Click here for more on ECP (Photophersis) • Various drugs discussed and their relationship to steroid use • Clinical Trials discussed: Important and used as upfront therapy: Click here for more re: Jason Car...
Jul 30, 2019•16 min•Season 1Ep. 2
• Definition of acute and chronic Graft Versus Host Disease (GVHD) • Examples of organs affected by both acute and chronic GVHD • Organs covered from head to toe • Fatigue • Your risk of getting cGVHD • Importance of staying in touch with your transplant center Click here to visit the Karmanos Cancer Center • Resources available through the nbmtLINK National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268. nbmtLINK Website: https://www.nbmtlink.org/ nbmtLINK Facebook Page: https:...
Jul 30, 2019•16 min•Season 1Ep. 1
The National Bone Marrow Transplant Link, established in 1992, strives to help patients, caregivers and families cope with the psychosocial challenges of bone marrow/stem cell transplant from diagnosis through survivorship. We provide vital information through valuable resource books, distributed nationally through our partnering cancer (transplant) centers. Many of our resources are also available on-line. We provide specialized and personalized support services as well. The information in this...
Jun 04, 2019•50 sec
