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    gvhd

    Explore " gvhd" with insightful episodes like "GvHD - Die Graft-versus-Host-Disease", "Double Bonus continued: An Interview with Pediatric Hematologist, Dr. Gregory Yanik PART 2", "S2 Bonus-An interview with Pediatric Hematologist, Dr. Andrew Campbell", "S2Ep3- Deciding to move forward with transplant" and "How Cancer Changed Their Lives for the Better: Michael & Ashlee Cramer" from podcasts like ""Gesundheit & Innovation", "Waiting is the Hardest (W.I.T.H Podcast 🎙)", "Waiting is the Hardest (W.I.T.H Podcast 🎙)", "Waiting is the Hardest (W.I.T.H Podcast 🎙)" and "I'm Dying to Tell You"" and more!

    Episodes (20)

    GvHD - Die Graft-versus-Host-Disease

    GvHD - Die Graft-versus-Host-Disease
    In dieser Folge sprechen wir  über Stammzellen. Was das genau ist und wie diese besonderen Körperzellen dank moderner Forschung und verbesserten Therapieverfahren dabei helfen, schwer erkrankten Menschen neue Hoffnung im Kampf gegen den Krebs zu geben. Und wir sprechen dabei auch über die GvHD - die Abkürzung steht für Graft-versus-Host-Disease, eine im Zusammenhang mit Stammzell-Transplantationen typischerweise auftretende Erkrankung.
    MAT-DE-2400466-1.0-02/2024

    Double Bonus continued: An Interview with Pediatric Hematologist, Dr. Gregory Yanik PART 2

    Double Bonus continued: An Interview with Pediatric Hematologist, Dr. Gregory Yanik PART 2

    We wrap up our conversation with Dr. Gregory Yanik, Director of the Pediatric Blood and Marrow Transplant Program at the University of Michigan Medical Center in Ann Arbor, Michigan. 

    Parts 1 and 2 of this double bonus episode is a must-listen for every patient, family, and doctor in the healthcare field.  Dr. Yanik epitomizes a model of compassion and respect for families and patients that every healthcare center should replicate and implement ASAP. 

    This episode covers graft versus host disease, patient advocacy, the latest in half and full-match bone marrow transplant options for patients with sickle cell anemia, gene editing, recently completed studies from the Bone Marrow Transplant Clinical Trial Network, and much more!

    S2 Bonus-An interview with Pediatric Hematologist, Dr. Andrew Campbell

    S2 Bonus-An interview with Pediatric Hematologist, Dr. Andrew Campbell

    Dr. Andrew Campbell, Director of the Comprehensive Sickle Cell Disease program at Children's National Hospital in Washington, D.C graces our presence on the show. Dr. Campbell enlightens us with the latest in cures for sickle cell disease, educates us on first-of-its-kind legislation, the Sickle Cell Disease Treatment Centers Act of 2022, natural remedies, and many more insights about Sickle Cell Disease and Bone Marrow Transplant that you can't miss.

    This episode is a must-share for anyone who is personally or knows someone who is experiencing sickle cell anemia. Press play now!

    S2Ep3- Deciding to move forward with transplant

    S2Ep3- Deciding to move forward with transplant

    Making the decision to go through a transplant is a difficult, if not heart wrenching, decision.  How does one make the decision to go through transplant? Where does the peace come from to move forward with a life changing decision? This episode reveals insights that helped Sofia's family make this difficult choice. Other topics include: Sofia's mental and emotional state leading up to the transplant, donor match types, finding your support system, and preparing financially to go through the transplant process. 

    How Cancer Changed Their Lives for the Better: Michael & Ashlee Cramer

    How Cancer Changed Their Lives for the Better:  Michael & Ashlee Cramer

    In this episode, hear 21 year old Michael Cramer who was given just eight months to live share his journey on beating a rare and aggressive blood cancer.  At age 19, Michael had been an athletic, healthy teenager.  He was a surfer and sailor, rarely sick and had never been hospitalized.  A routine blood test led to a life-changing cancer diagnosis.  After Michael was diagnosed with Hepatosplenic T-cell Lymphoma (HSTCL)  Michael and his mom Ashlee Cramer were terrified.  They knew Michael might not survive and could only have just eight months to live.  That was in July 2020.  Now Michael is inspiring others who are going through health hardships.  Although Michael has some major challenges as a result of his treatments, he and his Mom are reaching out and helping so many others.  This beautiful momma/son team talk cancer, share how this tragedy changed their lives for the better, and gave them the courage to motivate and inspire others.  From the beginning, Michael and his mom have embraced sharing their experience and the lessons they have learned on social media through Instagram and TikTok.   Recently they tell their story in more depth, from both perspectives on their podcast , called Michael and Mom Talk Cancer.  Michael still has a long recovery road ahead, but is now in full remission and is sharing his miraculous journey to let others know they are loved and not alone.  Thank you for listening and sharing with a friend.  Hugs, Lorri

    I am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

    Survivor and Advocate Meredith Cowden, MA, LPCC-S, Shares Insight and Resources Regarding Chronic Graft Versus Host Disease

    Survivor and Advocate Meredith Cowden, MA, LPCC-S, Shares Insight and Resources Regarding Chronic Graft Versus Host Disease

    Today, survivor and advocate Meredith Cowden talks about being your own advocate regarding GVHD.  As patient advocacy director of the Meredith Cowden Foundation, she has a wealth of resources to share, many of which are linked below.  

    (If you'd like to hear a more detailed version of Meredith's story, you can listen to Season 6, Episode 4 of the Marrow Masters podcast here: https://marrowmasters.simplecast.com/episodes/meredithcowden )

    After a diagnosis of AML, Meredith received an allogeneic bone marrow transplant from her sister in September of 2001.  In October, she developed acute Graft vs. Host Disease, which later became chronic Graft vs. Host Disease.  She talks about the frustrating, unpredictable nature of cGHVD, and how she began looking for resources.   Unfortunately, Google was not very helpful.  After some collaborative work, she presented a comprehensive list of resources at the 2020 NIH Patient Advocacy Summit.  The list includes peer support groups, organization that can help with financial assistance, and more.

    We've got her entire list on our website here: https://www.nbmtlink.org/wp-content/uploads/2022/06/cGVHD_Resouces_2020_NIH_Summit.pdf

    Meredith talks about "spoon theory."  You only have so many spoons for your day- she explains. Meredith also talks about the Meredith Cowden foundation, and their GVHD symposium series going on in 2022-2023.

    There's a book that Meredith recommends, written about prednisone, from the perspective of a doctor and a patient.  It's called Coping with Prednisone and you can find it here: https://www.amazon.com/Coping-Prednisone-Revised-Updated-Cortisone-Related/dp/0312375603

    Meredith is now 20-years post transplant and recently turned 40.  We spend some time discussing how she's been able to decipher which physical elements are related to GVHD versus just getting older - something she didn't think about at the time of her transplant.

    We wrap up with more practical advice from Meredith.  She talks about deciding what your priorities are.  What's most important to you?  That can help you set a routine and find balance in your life.   And it's OK to say "no" to people sometimes.  Finally, be your own best advocate.  Don't be afraid to speak up with your doctors and be part of the conversation around medical care.

    More Resources:

    The Meredith A. Cowden Foundation: https://cowdenfoundation.org/

    Spoonie Day App:  https://www.spoonieday.com/

    The National Bone Marrow Transplant Link's updated book on Graft vs. Host Disease: https://www.nbmtlink.org/product/graft-versus-host-disease/

    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 this season's sponsors:

    Pharmacylics: https://www.pharmacyclics.com/

    Janssen: https://www.janssen.com/

    Kadmon: https://kadmon.com/

    Sanofi: https://www.sanofi.com/

    Terri Tomoff - Keeping the Faith. Focus. Fight.

    Terri Tomoff - Keeping the Faith. Focus. Fight.

    SHOW NOTES

    4:35 – 35th wedding anniversary

    5:25 – key qualities to a strong and meaningful relationship

    6:00 – team approach

    6:45 – facing unexpected fears, head on, one day at a time

    7:25 – discovering inner strength

    7:55 – Olivia, the amazing daughter and sister

    9:05 – Special Love, Inc., Tom and Sheila Baker

    9:35 ­– BRASS Camp

    11:10 – Ryan, first cancer diagnosis at two years old

    11:35 – ordinary family with an extraordinary circumstance

    11:50 – leukemia meets it match with Ryan’s grit

    15:00 ­– choosing hope is choosing life

    15:15 – Make-a-Wish trips

    16:15 – leading through advocacy

    17:05 – management is key

    17:45 – gratitude for such remarkable support – it kept us going, it keeps us going

    19:25 – Camp Fantastic (Special Love, Inc.)

    20:15 – no one wants to join the club of parents of children with cancer

    21:00 – adult skills learned as a child through trial and error

    23:30 – rhythm of life, impact on traditions, a roller coaster of life

    24:35 – bringing home a puppy in the midst of the challenges

    25:45 – ready to go to the hospital on a moment’s notice

    27:10 – selecting quotations that capture the essence of one’s thoughts and intended message

    29:05 – meeting Ryan’s bone marrow donor, Scott Harris

    31:05 – consider joining the bone marrow registry

    32:00 – graft versus host disease can be deadly

    32:40 – Sharon and Lee Johnson, the ultimate role models and friends

    35:15 – manufacturing sunshine

    36:00 – Ryan’s loud pants

    37:05 – writing a second book (Joyride Journeys)

    38:30 – naming our cars and upcoming cross-country driving trip

    39:20 – post-traumatic growth and gains

    40:05 – how do we channel our loss?

    41:40 – advocate for yourself

     

    Focused Fight book

    Ryan’s speech

    Camp Fantastic

    Bone Marrow Registry 

    Terri’s website

    Post-Traumatic Growth article

    Music for Lead. Learn. Change. is Sweet Adrenaline by Delicate Beats

    Podcast cover art is a view from Brunnkogel (mountaintop) over the mountains of the Salzkammergut in Austria, courtesy of photographer Simon Berger, published on www.unsplash.com.

    Professional Association of Georgia Educators  

    David’s LinkedIn page

    Season 7 Trailer - cGVHD Long Haulers

    Season 7 Trailer - cGVHD Long Haulers

    Welcome to Marrow Masters Season 7, sponsored by Pharmacyclics and Jansen, and Kadmon, a Sanofi company.  This season we focus on long haulers – those who are dealing with chronic graft vs host disease.  We cover different treatment options.

    We’ll cover some topics that aren’t always easy to bring up.

    And we’ll cover the importance of taking care of not just your physical health, but your mental health as well.

    Season 7 of Marrow Masters is out June 21st.  Follow our show for free on Apple Podcasts, Spotify, YouTube, or wherever you’re listening right now.  For more, visit the National Bone Marrow Transplant Link at NBMTlink.org.

    Dr. Sung Choi Shares Her Best Advice Regarding Chronic Graft Versus Host Disease (cGVHD) as it affects children

    Dr. Sung Choi Shares Her Best Advice Regarding Chronic Graft Versus Host Disease (cGVHD) as it affects children

    Dr. Sung Choi is a pediatric bone marrow transplant physician at Michigan Medicine (University of Michigan).

    Dr. Choi joins us today to discuss the unique challenges for pediatric patients as it relates to Graft Versus Host Disease (cGVHD). Passionate and knowledgeable, Dr. Choi will tackle it all, including target organ damage, the cytokine storm, clinical trials and much more. 

    Classic organs affected by acute GVHD include skin, liver and GI tract. Did you know that typically the skin is the most affected in both pediatric and adult patients struggling with GVHD? (Check out our other episode with Dr. Cowen of the NIH in this series for more on all things skin GVHD.)

    Risk factors (of GVHD) are also discussed--how a mismatch  between the donor and recipient influences the onset of GVHD as well as age, conditioning chemo and much more. High dose steroids are covered and did you know that pediatric patients do not always respond to steroids? Listen in for other options. 

    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. The listed resources are not intended to be endorsements.

    Resources

    Dr. Choi bio: https://www.uofmhealth.org/profile/263/sung-won-choi-md

    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

    Thank you to this season's sponsors:

    Incyte Corporation: https://www.incyte.com/

    Kadmon: https://kadmon.com/

    Dr. Ed Cowen of the NIH Covers Graft Versus Host Disease (GVHD) Skin-Related Issues

    Dr. Ed Cowen of the NIH Covers Graft Versus Host Disease (GVHD) Skin-Related Issues

    Senior Clinician Dr. Edward Cowen is Head of the Dermatology Consultation Service at the National Institute of Arthritis and Musculoskeletal and Skin Diseases at the NIH. Dr. Cowen will share his expertise on skin issues as they relate to Graft Versus Host Disease (GVHD). 

    In this episode Dr. Cowen "covers" it all--dry scaly skin, red rashes, skin fibrosis and fasciitis. His expertise will make patients and caregivers alike feel more confident and knowledgeable about skin GVHD. When should you seek treatment and which doctor should you see? He will address clinical trials, long term prognosis and talks about what is on the horizon for the treatment of skin GVHD. 

    He mentions topical over the counter treatments like Aquaphor and Sarna, as well as oral antihistamines like Benadryl, Allegra, Zyrtec, and Claritin.

    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. The listed resources are not intended to be endorsements.

    Resources: 

    Dr. Cowen's ruxolitinib trial: https://clinicaltrials.gov/ct2/show/NCT03395340

    National Institute of Arthritis and Musculoskeletal and Skin Diseases: https://www.niams.nih.gov/

    NIH Clinical Trials Website: https://clinicaltrials.gov/

    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

    https://www.niams.nih.gov/about/directory/edward-w-cowen-md-mhsc

    Thank you to this season's sponsors:

    Incyte Corporation: https://www.incyte.com/

    Kadmon: https://kadmon.com/

    Meet Dr. Molly Gallogly and Learn about Seidman's Graft Versus Host Disease Clinic

    Meet Dr. Molly Gallogly and Learn about Seidman's Graft Versus Host Disease Clinic

    Molly Gallogly, MD, PhD, Attending Physician, and director of the Graft Versus Host Disease (GVHD) program at the Seidman Cancer Center in Cleveland, OH, is one busy doctor. Dr. Gallogly will share what happens at their incredible GVHD clinic and why it is advantageous to have a designated GVHD clinic. Newly diagnosed patients are evaluated and seen regularly as long as their GVHD is active. A detailed head-to-toe exam and full skin exam are standard and each GVHD patient is accurately staged and graded. 

    We will learn about the importance of a symptom diary, and help you anticipate potential side effects from steroids. ("Buy one get three free"-you'll want to hear what that means.) Dr. Gallogly compares GVHD to a storm at sea. 

    Clinical trials can be a revolving door. You can't help but feel the excitement learning more about them.

    And don't forget slow and steady wins the race. Listen in for many more tips sure to make you feel better educated and equipped to deal with GVHD.

    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. The listed resources are not intended to be endorsements.

    Resources: 

    University Hospital (Cleveland)'s Seidman Cancer Center BMT Program: https://www.uhhospitals.org/services/cancer-services/hematologic-malignancy/stem-cellbone-marrow-transplant-program

    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

    Thank you to this season's sponsors:

    Incyte Corporation: https://www.incyte.com/

    Kadmon: https://kadmon.com/

    Perry Cheathem Fights Graft Versus Host Disease With Faith and Peace

    Perry Cheathem Fights Graft Versus Host Disease With Faith and Peace

    Perry Cheathem noticed swelling in his legs in 2014. After many rounds of chemo that were not working, Perry had his life-saving bone marrow transplant in June of 2015. This determined man of faith and dad of five children says he was actually honored to get cancer, deciding it was a testimony to help others. He was not afraid and is at peace with the process, walking with God through it all. 

    Perry shares his donor story and his desire to help build awareness of the donor process, especially as it relates to minorities. Perry's Graft Versus Host Disease (GVHD) issues included dry eyes, dry mouth, and speech issues. These led to dental and breathing issues. But it just doesn't stop this determined, resilient guy from sticking to it and succeeding. In fact, Perry was recently able to run a three mile race. 

    Perry shares his story of love and support from family and friends--and you won't want to miss a 20-year story of friendship that stood the test of time. Perry hasn't let cancer define him and his story will inspire you to keep moving forward and plan for the future with grace and love in your heart.

    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. The listed resources are not intended to be endorsements.

    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

    Thank you to this season's sponsors:

    Incyte Corporation: https://www.incyte.com/

    Kadmon: https://kadmon.com/

    Lisa Loutzenhiser Shares Her Spunk as She Takes on Graft Versus Host Disease (GVHD)

    Lisa Loutzenhiser Shares Her Spunk as She Takes on Graft Versus Host Disease (GVHD)

    Lisa Loutzenhiser was 56 years-old when she felt off in December. It was the holidays, and she was simply just exhausted. A teacher, she carried on until she needed to finally call in sick one day. Her diagnosis in late January was AML, and the journey began with her transplant in May of 2020. Oh, and let's add COVID to the story too. 

    Lisa will share her Graft Versus Host Disease (GVHD) story including her skin issues, precautions needed for being in the sun, gut issues and much more. "As if the diagnosis wasn't enough, GVHD was an extra job," she says.

    Lisa is supported by her now-husband and two daughters, and she shares the importance of finding your group and what she calls "the benefits of cancer." You won't want to miss that. This incredible lady is honest about what it took to get to this point. She's now back to gardening, enjoying her vineyard, and traveling the country in her Fifth Wheel camper.

    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. The listed resources are not intended to be endorsements.

    Resources: 

    The Cancer Patient on Instagram: https://www.instagram.com/thecancerpatient/

    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

    Thank you to this season's sponsors:

    Incyte Corporation: https://www.incyte.com/

    Kadmon: https://kadmon.com/

    Season 6 Trailer

    Season 6 Trailer

    Welcome to Season 6 of the Marrow Masters podcast series, sponsored by the National Bone Marrow Transplant Link, Incyte Corporation and Kadmon. The National Bone Marrow Transplant link, established in 1992, strives to help patients, caregivers, and their families cope with the psycho-social challenges of transplant, from diagnosis through survivorship.  Season 6 focuses on advice for dealing with Graft Versus Host Disease (GVHD).  We’ll hear from health care professionals on the front lines of this disease.

    We will also hear from patients who have many different perspectives on cancer and GVHD.

    Don’t miss Season 6 of the Marrow Masters podcast.  Follow us on Apple, Spotify, or wherever you get your podcasts.  For more information on the Marrow Masters podcast and the National Bone Marrow Transplant link, visit nbmtlink.org.

    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. The listed resources are not intended to be endorsements.

    Resources: 

    The Cancer Patient on Instagram: https://www.instagram.com/thecancerpatient/

    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

    Thank you to this season's sponsors:

    Incyte Corporation: https://www.incyte.com/

    Kadmon: https://kadmon.com/

    AML Survivor Jennifer Barish Talks About Returning to Work and Dancing in the Rain

    AML Survivor Jennifer Barish Talks About Returning to Work and Dancing in the Rain

    Jennifer Barish is now a 10 year survivor of acute myeloid leukemia (AML), and today she walks us through her journey of returning to work, battling chronic GVHD, and more. 

    We always hear the cliché about this journey being a marathon, not a sprint. But Jen's journey of slowly returning to work after a five year leave of absence illustrates this point.  She needed a plan, but also needed to be flexible with that plan. 

    Sometimes, the simplest quote can provide inspiration. Jen knows that "Life is About Learning to Dance in the Rain."  She talks about deriving inspiration from that advice, how its helped on her journey, and how she now mentors others.

    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. The listed resources are not intended to be endorsements.

    Resources:

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

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

    Thank you to this season's sponsors:

    The Leukemia & Lymphoma Society: https://www.lls.org/

    Seagen: https://www.seagen.com/

    Omeros Corporation: https://www.omeros.com/

    Expert Insights on Key Data From ASH 2020 on Nonmalignant Hematologic Disorders

    Expert Insights on Key Data From ASH 2020 on Nonmalignant Hematologic Disorders

    In this episode, Hanny Al-Samkari, MD; Sujit Sheth, MD; and Mark A. Schroeder, MD, provide their clinical perspectives on new data from ASH 2020 on nonmalignant hematologic disorders, with topics including:

    • Use of mycophenolate mofetil plus corticosteroids vs standard corticosteroid treatment in patients with ITP from the phase III FLIGHT study 
    • Analysis of an ongoing phase I/II trial of rilzabrutinib reporting safety and efficacy in the long-term extension for adult patients with relapsed/refractory ITP
    • New data from the phase III HOPE-B study of etranacogene dezaparvovec gene therapy, using an AAV5-vector to deliver the Padua variant of the factor IX gene in patients with hemophilia B 
    • An update from the phase I/II CLIMB THAL-111/SCD-121 studies reporting safety and efficacy on the first 10 patients receiving CTX001 with at least 3 months of follow-up
    • Primary analysis from the phase III REACH3 trial evaluating ruxolitinib, an oral JAK1/2 inhibitor, in combination with steroids and calcineurin inhibitors, as a treatment for steroid-refractory or steroid-dependent chronic GVHD
    • Top-line results from the phase II ROCKstar study of belumosudil, a ROCK2 kinase inhibitor, in patients with heavily pretreated chronic GVHD
    • Phase I data from the GRAVITAS-119 study of JAK1 inhibitor itacitinib plus calcineurin inhibitors as prophylaxis treatment for acute GVHD

    Presenters:

    Hanny Al-Samkari, MD
    Instructor
    Department of Medicine
    Harvard Medical School
    Attending Hematologist and Clinical Investigator
    Division of Hematology Oncology
    Massachusetts General Hospital
    Boston, Massachusetts

    Sujit Sheth, MD
    Professor
    Department of Pediatrics
    Weill Cornell Medicine
    New York, New York

    Mark A. Schroeder, MD
    Associate Professor of Medicine
    Division of Oncology
    Department of Medicine
    Washington University School of Medicine in St Louis
    St Louis, Missouri

    Content supported by educational grants from Amgen; AstraZeneca; Bristol-Myers Squibb; Epizyme, Inc.; GlaxoSmithKline; Incyte Corporation; Janssen Biotech; Karyopharm Therapeutics Inc.; Novartis; PharmaEssentia Corp.; Seattle Genetics; and Takeda Oncology. 

    Link to full program, including downloadable slidesets, and on-demand Webcasts:
    http://bit.ly/3tyQ9nG

    Pain Management for Patients: Expert Cathleen Graham, RN, Shares Her Vast Knowledge re: Cannabis and More

    Pain Management for Patients: Expert Cathleen Graham, RN, Shares Her Vast Knowledge re: Cannabis and More

    Today we have Cathleen S. Graham RN, CHPN, the regional manager for one of the nation's largest hospice organizations and the CEO of CannabisNurse.com. Cathleen is also a partner with Leaf Medic, Michigan's first online vocational school to offer cannabis industry training. 

    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. The listed resources are not intended to be endorsements.

    Cathleen suggests you look for unbiased scientific locations to learn more. 

    Her suggestions include:

    Cannabis Nurse.com: https://cannabisnurse.com/

    American Cannabis Nurses Association: https://cannabisnurses.org/

    Cannabis Nurses Network: https://www.cannabisnursesnetwork.com/

    The Society of Cannabis Clinicians: https://www.cannabisclinicians.org/

    Dr. Sulak at https://healer.com/

    The debilitating medical conditions that qualify an individual for the medical use of marijuana include one or more of the following: 

    • Cancer
    • Glaucoma
    • HIV Positive
    • AIDS
    • Hepatitis C
    • Amyotrophic Lateral Sclerosis (ALS)
    • Crohn’s Disease
    • Agitation of Alzheimer’s Disease
    • Nail Patella
    • Post - Traumatic Stress Disorder (PTSD)
    • Obsessive Compulsive Disorder (OCD)
    • Arthritis
    • Rheumatoid Arthritis
    • Spinal Cord Injury
    • Colitis
    • Inflammatory Bowel Disease
    • Ulcerative Colitis
    • Parkinson’s Disease
    • Tourette’s Disease
    • Autism
    • Chronic Pain
    • Cerebral Palsy
    • A chronic or debilitating disease or medical condition or its treatment that produces 1 or more of the following:
      • Cachexia or Wasting Syndrome
      • Severe and Chronic Pain
      • Severe Nausea
      • Seizures (Including but not limited to those characteristic of epilepsy)
      • Severe and Persistent Muscle Spasms (Including but not limited to those characteristic of multiple sclerosis)

    For every pro there is a possible con. For example, cannabis is said to help manage anxiety or symptoms of PTSD. However, if one takes too much cannabis it can cause anxiety and panic. Also, if one with PTSD obtains a cannabis chemovar that is high in pinene it can cause the symptoms of PTSD to become worse. Cannabis is also known to increase heart rate up to 50%.

    A recent study published in Forensic Science International this month declared “After exclusion of other causes of death we assume that the young men experienced fatal cardiovascular complications evoked by smoking cannabis.”

    These reports indicate that the need for education is paramount for the safety of the consumer. CBD is a great vasorelaxant and can decrease blood pressure as well as stabilize blood sugar levels. CBD does not activate CB1 receptors in the brain, and is devoid of the psychotropic actions of THC (meaning it will not get you high). Indeed, CBD may antagonize the psychoses associated with THC (meaning CBD decreases the effects of THC). 

    The difference between cannabis oil and hemp CBD oil is the amount of THC that is allowed. Hemp CBD oil is allowed to have 0.3% THC along with all the other cannabinoids found in that particular plant. Cannabis oil has a lot more THC and very little CBD. 

    A research study suggests that 96% of cannabis has no CBD in it at all. CBD is found mostly in the Hemp plant. CBD isolate is just that- only the CBD. This isolate does not have any other cannabinoids. CBD is the cannabinoid that has the most medicinal benefit- CBD alone is great at decreasing pain, inflammation, nausea, insomnia, and muscle spasms as well as many other symptoms too.  Also, CBD does not show on a drug screen test as they usually only test for THC. 

    When you use full spectrum cannabis or hemp products you are getting the most medicinal benefit as they all work well to balance each other and create an entourage effect. It is important to remember that if you use a full spectrum hemp oil that you can fail a drug test as these products do have 0.3% THC. 

    There are both pros and cons to the different methods of administration. Smoking the byproducts can cause serious diseases in a person. Vaping or dabbing can reduce those harmful byproducts by not combusting the product. Inhaling is the fastest way to get cannabis into your body-- it is also the shortest lasting-- meaning you have to use this method a lot more often to feel the medicinal benefits. Note: We caution you that vaping has been determined to be dangerous. 

    Edibles or Medibles take a lot longer to feel the effects although the effects may last up to 8 hours using this method. When you eat cannabis it is important to remember that the Delta 9 THC converts to 11 Hydroxy THC which is 3-4 times more potent and psycho active than Delta 9 THC. 11 Hydroxy THC passes through the blood brain barrier easier and that is good news for Parkinson’s patients. Sublingual is the easiest to micodose and is often used by the pediatric patients the most. Topical products are not psycho active and work at the site where it is applied.

    Medical marijuana may affect the effectiveness of medications taken to control GVHD (tacrolimus, cyclosporine, steroids) as well as anti-depressants and potentially antibiotics and antifungals: What we do know from our knowledge is that it does have some effect on post-transplant medications so there is some effect on mycophenolate, tacrolimus, cyclosporine or steroids so many of the medications a patient might receive post-transplant, these agents may inhibit them and cause increased levels of the drug which may result in toxicity. Also, it can inhibit our antidepressants which would again increase our level of toxicity with those drugs. We can see some potential drug-drug interactions with our antibiotics, as well as our antifungals which many transplant patients will receive. We do worry about these because things like Voriconazole, Posaconazole, any of our azoles. Many of our mycins, erythromycin, clarithromycin, antibiotics may be affected by these.

    There are concerns about infection in transplant patients who use marijuana: From an infection standpoint, we do have concerns. Especially with smoking marijuana in our patient population. We have concerns with fungal infections. There are some case reports looking at patients who are smoking marijuana or who have smoked marijuana or who are immunosuppressed post-transplant who have developed severe fungal infections and have died from those fungal infections. That could be a result of mold spores that may be contained in the buds that are smoked, as well it could be a result of increase in inflammation and causing infection risk in the lungs. Again, when we have patients who are immunosuppressed, who have too few white blood cells, we really do advise them NOT to use smoked products. We really advise them to use edibles or tinctures of some other nature.

    Microbe contamination of marijuana products is a concern: There's no standard manufacturing, so we worry about microbe contamination just like we would worry about smoking those natural products with mold spores.

    Micro contamination, we worry about pesticide contamination from how the crops were raised. With that, in our immunosuppressed patient population this is a real concern because patients can be more susceptible to these types of toxicities. Then there is just an unmonitored chain supply. Again, with FDA approved drugs as they go through quality control - we do monitor where the drugs are and what temperatures they are and when they have been where. In this situation, there really is an unmonitored chain supply so we do not know where there might be potential places for contamination to occur as the product is being prepared for patient use.

    Small studies suggest that marijuana may help in control of Graft Versus Host Disease

    Please remember: this is an overall, general education. Again, we want to stress that with laws differing so much state to state regarding the use of cannabis or CBD, it is very important you learn the laws for YOUR state. We also are working with what is legal at the time of this recording, in June 2020. Please consult your doctor should you have personal questions or concerns, applicable to your care plan.

    For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.

    This season of Marrow Masters is sponsored by the nbmtLINK, Jazz Pharmaceuticals and The Leukemia & Lymphoma Society.

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

    The Leukemia & Lymphoma Society: https://www.lls.org/

    Kelly Barnwell Shares Her Journey and her Haplo Experience

    Kelly Barnwell Shares Her Journey and her Haplo Experience

    Diagnosis: Acute Lymphoblastic Leukemia (ALL). 

    Merely 45 years old at the time, this wonderful lady has much to share in the past three years! Kelly has had two transplants, the second being a haploidentical transplant, a haplo. Get ready to be inspired. 

    Note: At the time Kelly recorded this podcast with us in the spring, she was in remission. Since then, she has had a relapse but we are so happy to say she is getting through this next chapter and hoping to make a full recovery. 

    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. The listed resources are not intended to be endorsements.

    For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.

    This season of Marrow Masters is sponsored by the nbmtLINK, Jazz Pharmaceuticals and The Leukemia & Lymphoma Society.

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

    The Leukemia & Lymphoma Society: https://www.lls.org/

    Meet Roy Proctor: A Survivor of Transplants, GVHD and Wisdom Beyond His Years

    Meet Roy Proctor: A Survivor of Transplants, GVHD and Wisdom Beyond His Years

    Roy has a perspective on all of this that is humbling, real and evolving. "I've lost things and I've gained things," Roy shares.

    Listen in to learn more about this young man's profound strength, determination and authenticity. Roy reminds us that you can control what you can control, and you can let go of what you can't.

    You will find yourself rooting for Roy as you follow his journey as an AYA to a resilient young man willing to share his soul to help others. Roy talks frankly about the benefits of therapy on his journey and compares looking for a therapist to looking for a used car--don't be afraid to look under the hood and shop around for the perfect car for you. 

    Finally, Roy shares his perspective regarding being your own best advocate--learn the language of your disease and educate yourself. There is so much wisdom shared here from a young man who inspires us immensely. 

    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. The listed resources are not intended to be endorsements.

    For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.

    This season of Marrow Masters is sponsored by the nbmtLINK, Jazz Pharmaceuticals and The Leukemia & Lymphoma Society.

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

    The Leukemia & Lymphoma Society: https://www.lls.org/

    Lew Christie: Patient Perspective: Multiple Transplants, GVHD Struggles and Still Going Strong

    Lew Christie: Patient Perspective: Multiple Transplants, GVHD Struggles and Still Going Strong

    Lew Christie is 71 years of age and was diagnosed with Acute Myeloid Leukemia (AML) in December 2012, with a very pessimistic diagnosis. A worker at the scene of 9-11 in NYC in 2001, Lew believes his health issue stemmed from the carcinogens breathed in after that catastrophic tragedy.

    Settle in and get ready to be inspired and humbled by the journey of Lew. Lew received two transplants, one from an unrelated donor in spring of 2014. Later that year, he received a haplo transplant from his daughter.

    GVHD also plays a significant role in Lew's continuous journey.  

    Lew is a husband, dad, grandpa and great friend, and he credits his incredible wife's support. He shares his experiences with others through Facebook groups and finds support groups to be very helpful. Lew is a busy guy and you will hear more about all the activities he participates in during in his robust life as a survivor.  

    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. The listed resources are not intended to be endorsements.

    One of Lew's favorite things is walking, Visit the Charity Miles website for more on a great way to get your steps in and give back- https://charitymiles.org/

    For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.

    This season of Marrow Masters is sponsored by the nbmtLINK, Jazz Pharmaceuticals and The Leukemia & Lymphoma Society.

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

    The Leukemia & Lymphoma Society: https://www.lls.org/

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