Podcasts about gvhd

Cancer Stories: The Art of Oncology

Play Episode Listen Later Mar 20, 2025 19:07

In today's episode, we'll discuss time-limited triplet therapy in relapsed or refractory CLL. Zanubrutinib, venetoclax and obinutuzumab induced deep remissions, and was well tolerated, even in very high-risk patients, and those with prior exposure to targeted therapies. After that: researchers chronicle the development of a patient-reported outcome measure for sclerosis associated with chronic GVHD—graft-versus-host disease. The new symptom scale—currently undergoing validation studies—may provide valuable information regarding severity, functional impact, and response to therapy. Finally, a study of changes in population dynamic rates that underlie inflammation-associated myeloid bias. The work demonstrates the use of mathematical models to deliver critical biological insights and uncover underlying mechanisms.Featured Articles:MRD-guided zanubrutinib, venetoclax, and obinutuzumab in relapsed CLL: primary end point analysis from the CLL2-BZAG trialDevelopment of the Lee Symptom Scale–Skin Sclerosis for chronic GVHD–associated sclerosisPopulation dynamics modeling reveals that myeloid bias involves both HSC differentiation and progenitor proliferation biases

I Hope So Too: Creating Space to Hope with Patients and Families

Play Episode Listen Later Mar 13, 2025 24:28

Listen to ASCO's Journal of Clinical Oncology Art of Oncology article, "I Hope So Too” by Dr. Richard Leiter from Dana-Farber Cancer Institute. The article is followed by an interview with Leiter and host Dr. Mikkael Sekeres. Leiter shares that even in the most difficult moments, clinicians can find space to hope with patients and their families. TRANSCRIPT Narrator: I Hope So Too, by Richard E. Leiter, MD, MA “You're always the negative one,” Carlos' mother said through our hospital's Spanish interpreter. “You want him to die.” Carlos was 21 years old. A few years earlier he had been diagnosed with AML and had undergone an allogeneic bone marrow transplant. He was cured. But now, he lay in our hospital's bone marrow transplant (BMT) unit, his body attacked by the very treatment that had given him a new life. He had disseminated graft-versus-host disease (GVHD) in his liver, his lungs, his gut, and, most markedly, his skin. The BMT team had consulted us to help with Carlos' pain. GVHD skin lesions covered his body. They were raw and weeping. Although the consult was ostensibly for pain, the subtext could not have been clearer. Carlos was dying, and the primary team needed help navigating the situation. As his liver and kidney function declined, the need to address goals of care with Carlos' mother felt like it was growing more urgent by the hour. Difficult cases, like a young person dying, transform an inpatient unit. Rather than the usual hum of nurses, patient care associates, pharmacy technicians, and unit managers going about their daily work, the floor becomes enveloped in tension. Daily rhythms jump a half step ahead of the beat; conversations among close colleagues fall out of tune. “Thank goodness you're here,” nurse after nurse told my attending and me, the weight of Carlos' case hanging from their shoulders and tugging at the already puffy skin below their eyes. I was a newly minted palliative care fellow, just over a month into my training. I was developing quickly, but as can happen with too many of us, my confidence sat a few steps beyond my skills. I thought I had a firm grasp of palliative care communication skills and was eager to use them. I asked for feedback from my attendings and genuinely worked to incorporate it into my practice. At the same time, I silently bristled when they took charge of a conversation in a patient's room. Over the ensuing week, my attending and I leaned in. We spent hours at Carlos' bedside. If I squinted, I could have convinced myself that Carlos' pain was better. Every day, however, felt worse. We were not making any progress with Carlos' mother, who mostly sat silently in a corner of his room. Aside from occasionally moaning, Carlos did not speak. We learned little, if anything, about him as a person, what he enjoyed, what he feared. We treated him, and we barely knew him. Each morning, I would dutifully update my attending about the overnight events. “Creatinine is up. Bili is up.” She would shake her head in sadness. “Doesn't she get that he's dying?” one of the nurses asked us. “I feel like I'm torturing him. He's jaundiced and going into renal failure. I'm worried we're going to need to send him to the ICU. But even that won't help him. Doesn't she understand?” We convened a family meeting. It was a gorgeous August afternoon, but the old BMT unit had no windows. We sat in a cramped, dark gray family meeting room. Huddled beside Carlos' mother was everyone on the care team including the BMT attending, nurse, social worker, chaplain, and Spanish interpreter. We explained that his kidneys and liver were failing and that we worried time was short. Carlos' mother had heard it all before, from his clinicians on rounds every day, from the nursing staff tenderly caring for him at his bedside, and from us. “He's going to get better,” she told us. “I don't understand why this is happening to him. He's going to recover. He was cured of his leukemia. I have hope that his kidneys and liver are going to get better.” “I hope they get better,” I told her. I should have stopped there. Instead, in my eagerness to show my attending, and myself, I could navigate the conversation on my own, I mistakenly kept going. “But none of us think they will.” It was after this comment that she looked me right in the eyes and told me I wanted Carlos to die. I knew, even then, that she was right. In that moment, I did want Carlos to die. I could not sit with all the suffering—his, his mother's, and his care team's. I needed her to adopt our narrative—that we had done all we could to help Carlos live, and now, we would do all we could to help him die comfortably. I needed his mother to tell me she understood, to accept what was going on. I failed to recognize what now seems so clear. Of course, his mother understood what was happening. She saw it. But how could we have asked her to accept what is fundamentally unacceptable? To comprehend the incomprehensible? At its best, serious illness communication not only empathetically shares news, be it good or bad, but also allows patients and families adequate time to adjust to it. For some, this adjustment happens quickly, and in a single conversation, they can digest difficult news and move to planning the next steps in care for themselves or their loved ones. For most, they need more time to process, and we are able to advance the discussion over the course of multiple visits. My attending led the conversations from then on. She worked with the BMT attending, and they compassionately kept Carlos out of the intensive care unit. He died a few days later, late in the evening. I never saw his mother again. I could not have prevented Carlos' death. None of us could have. None of us could have spared his mother from the grief that will stay with her for the rest of her life. Over those days, though, I could have made things just a little bit less difficult for her. I could have protected her from the overcommunication that plagues our inpatient units when patients and families make decisions different from those we would make for ourselves and our loved ones. I could have acted as her guide rather than as her cross-examiner. I could have hoped that Carlos stopped suffering and, genuinely, hoped he got better although I knew it was next to impossible. Because hope is a generous collaborator, it can coexist with rising creatinines, failing livers, and fears about intubation. Even in our most difficult moments as clinicians, we can find space to hope with our patients, if we look for it. Now—years later, when I talk to a terrified, grieving family member, I recall Carlos' mother's eyes piercing mine. When they tell me they hope their loved one gets better, I know how to respond. “I hope so too.” And I do. Dr. Mikkael Sekeres: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the oncology field. I'm your host, Mikkael Sekeres. I'm professor of Medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center at University of Miami. Today I am thrilled to be joined by Dr. Ricky Leiter from the Dana-Farber Cancer Institute. In this episode, we will be discussing his Art of Oncology article, “I Hope So, Too.” Our guest's disclosures will be linked in the transcript. Ricky, welcome to our podcast and thank you so much for joining us. Dr. Ricky Leiter: Thanks so much for having me. I'm really excited to be here. Dr. Mikkael Sekeres: Ricky, I absolutely adored your essay. It really explored, I think, a combination of the vulnerability we have when we're trying to take care of a patient who's dying and the interesting badlands we're placed in when we're also a trainee and aren't quite sure of our own skills and how to approach difficult situations. But before we dive into the meat of this, can you tell us a little bit about yourself? Where are you from and where did you do your training? Dr. Ricky Leiter: Sure, yeah. Thanks so much. So I grew up in Toronto, Canada, and then moved down to the States for college. I was actually a history major, so I never thought I was going to go into medicine. And long story short, here I am. I did a Post-Bac, did a year of research, and ended up at Northwestern Feinberg School of Medicine for med school, where I did a joint degree in medical humanities and bioethics. And that really shaped my path towards palliative care because I found this field where I said, “You know, wow, I can use these skills I'm learning in my Master's at the bedside with patients thinking about life and death and serious illness and what does that all mean in the broader context of society.” So, moved from Chicago to New York for residency, where I did residency and chief residency in internal medicine at New York Presbyterian Cornell, and then came up to the Harvard Interprofessional Palliative Care Program, where I did a clinical fellowship, then a research fellowship with Dana-Farber, and have been on faculty here since. Dr. Mikkael Sekeres: Fantastic. Any thoughts about moving back to Canada? Dr. Ricky Leiter: We talk about it every now and then. I'm really happy here. My family's really happy here. We love life in Boston, so we're certainly here for the time being. Definitely. Dr. Mikkael Sekeres: And the weather's so similar. Dr. Ricky Leiter: Yeah, I'm used to the cold. Dr. Mikkael Sekeres: I apparently did not move to Miami. I'm curious, this may be an unfair question, as you have a really broad background in humanities and ethics. Are there one or two books that you read where you think, “Gee, I'm still applying these principles,” or, “This really still resonates with me in my day to day care of patients who have cancer diagnosis”? Dr. Ricky Leiter: Oh, wow, that is a great question. There are probably too many to list. I think one is When Breath Becomes Air by Paul Kalanithi, which I didn't read in my training, I read afterwards. And I think he's such a beautiful writer. The story is so poignant, and I just think Paul Kalanithi's insights into what it means to be living with a serious illness and then ultimately dying from cancer as a young man, as someone in medicine, has really left an imprint on me. Also, Arthur Kleinman. The Illness Narratives, I think, is such a big one, too. And similarly, Arthur Frank's work. I mean, just thinking about narrative and patient stories and how that impacts our clinical care, and also us as clinicians. Dr. Mikkael Sekeres: And I suspect us as writers also. Dr. Ricky Leiter: Absolutely. Dr. Mikkael Sekeres: We imprint on the books that were influential to us. Dr. Ricky Leiter: Certainly. Dr. Mikkael Sekeres: So how about your story as a writer? How long have you been writing narrative pieces? Is this something you came to later in your career, or did you catch the bug early as an undergrad or even younger? Dr. Ricky Leiter: So I caught it early, and then it went dormant for a little while and came back. As a history major, as someone who is humanities minded, I loved writing my papers in college. Like, I was one of those nerds who got, like, really, really excited about the history term paper I was writing. You know, it was difficult, but I was doing it, particularly at the last minute. But I really loved the writing process. Going through my medical training, I didn't have as much time as I wanted, and so writing was sort of on the back burner. And then actually in my research fellowship, we had a writing seminar, our department, and one of the sessions was on writing Op-eds and perspective pieces. And we had a free write session and I wrote something sort of related to my research at the time I was thinking about, and Joanne Wolfe, who was helping to lead the session, pediatric palliative care physician, she said, “You know, this is really great. Like, where are you going to publish this?” And I said, “Joanne, what do you mean? I just wrote this in this session as an exercise.” She said, “No, you should publish this.” And I did. And then the bug came right back and I thought, “Wow, this is something that I really enjoy and I can actually make a difference with it. You know, getting a message out, allowing people to think a little bit differently or more deeply about clinical cases, both in the lay press and in medical publications.: So I've essentially been doing it since and it's become a larger and larger part of my career. Dr. Mikkael Sekeres: That's absolutely wonderful, Ricky. Where is it that you publish then, outside of Art of Oncology? Dr. Ricky Leiter: So I've had a couple of pieces in the New York Times, which was really exciting. Some in STAT News on their opinion section called First Opinion, and had a few pieces in the New England Journal as well, and in the Palliative Care Literature, the Journal of Palliative Medicine. Dr. Mikkael Sekeres: Outstanding. And about palliative care issues and end of life issues, I assume? Dr. Ricky Leiter: Sort of all of the above. Palliative care, serious illness, being in medical training, I wrote a fair bit about what it was like to be on the front lines of the pandemic. Dr. Mikkael Sekeres: Yeah, that was a traumatic period of time, I think, for a lot of us. Dr. Ricky Leiter: Absolutely. Dr. Mikkael Sekeres: I'm curious about your writing process. What triggers a story and how do you face the dreaded blank page? Dr. Ricky Leiter: So it's hard to pin down exactly what triggers a story for me. I think sometimes I'm in a room and for whatever reason, there's a moment in the room and I say, “You know what? There's a story here. There's something about what's going on right now that I want to write.” And oftentimes I don't know what it is until I start writing. Maybe it's a moment or a scene and I start writing like, “What am I trying to say here? What's the message? And sometimes there isn't a deeper message. The story itself is so poignant or beautiful that I want to tell that story. Other times it's using that story. And the way I think about my writing is using small moments to ask bigger questions in medicine. So, like, what does it mean to have a good death? You know, one piece I wrote was I was thinking about that as I struggled to give someone what I hoped would be a good death, that I was thinking more broadly, what does this mean as we're thinking about the concept of a good death? Another piece I wrote was about a patient I cared for doing kidney palliative care. And she was such a character. We adored her so much and she was challenging and she would admit that. This was someone I wanted to write about. And I talked to her about it and she was honored to have her story told. Unfortunately, it came out shortly after her death. But she was such a vibrant personality. I said, “There's something here that I want to write about.” In terms of the blank page, I think it's overcoming that fear of writing and procrastination and all of that. I think I have a specific writing playlist that I put on that helps me, that I've listened to so many times. You know, no words, but I know the music and it really helps me get in the zone. And then I start writing. And I think it's one of those things where sometimes I'm like, “Oh, I really don't like how this is sounding, but I'm going to push through anyways.” as Anne Lamott's blank first draft, just to get something out there and then I can play with it and work with it. Dr. Mikkael Sekeres: Great. I love the association you have with music and getting those creative juices flowing and picking ‘le mot juste' in getting things down on a page. It's also fascinating how we sometimes forget the true privilege that we have as healthcare providers in the people we meet, the cross section of humanity and the personalities who can trigger these wonderful stories. Dr. Ricky Leiter: Absolutely. Absolutely. It's such a privilege and I think it often will go in unexpected directions and can really impact, for me certainly, my practice of medicine and how I approach the next patients or even patients years down the road. You remember those patients and those stories. Dr. Mikkael Sekeres: Right. You write with such obvious love and respect for your patients. You also write about that tenuous phase of our careers when we're not yet attendings but have finished residency and have demonstrated a modicum of competence. You know, I used to say that fellowship is really the worst of all worlds, right? As an attending, you have responsibility, but you don't have to do as much of the grunt work. As a resident, you do the grunt work, but you don't really have the responsibility. And in fellowship, you've got it all. You've got to do the grunt work, and you have the responsibility. Can you tie those two concepts together, though? How does our relationship to our patients change over the course of our careers? Dr. Ricky Leiter: Early on, if you think about the imprinting of patients as you go down the road, so many of the patients who have imprinted on me were the ones earlier in my career, before I was more formed as a clinician because of experiences like the one I wrote about in “I Hope so Too,” where the skills are forming, and sometimes where it's smooth sailing, and sometimes we're muddling through. And those cases where we feel like we're muddling through or things don't go as we hope, those are the ones that really leave an impact. And I think it's those little moments that sort of nudge your career and your skill set in different ways. I think the patients now, they still leave a mark on me, but I think it's in different ways. And I think oftentimes it's less about my skills. Although my skills are still very much developing, even, you know, almost a decade out, they impact me differently than they once did. I feel more confident in what I'm doing, and it's more about my relationship to this situation rather than the situation's impact on my skills. Dr. Mikkael Sekeres: Got it. Got it. It's interesting. I once wrote a piece with Tim Gilligan, who also spent some time at Dana Farber and is a communications expert, about how there's this kind of dualism in how we're trained. We're trained with communications courses and how to talk to patients, and it almost does the opposite. It kind of raises the flag that, “Wait a second, maybe I've been talking to people the wrong way.” And as you get more mature in your career, I almost feel as if you revert back to the way you were before medical school, when you just talked to people like they were people and didn't have a special voice for patients. Dr. Ricky Leiter: Yeah, I think that's right. And I think in palliative care, we spend so much time thinking about the communication. And this was the most challenging piece about fellowship because then- and our fellowship directors told this to us, and now we teach it to our fellows. You know that you come in, the people who choose to go into palliative care, have a love of communication, have some degree of skill coming in, and then what happens is we break those skills down and teach them a new skill set. So it gets clunkier before it gets better. And the time I was writing about in this piece was August of my fellowship year, exactly when that process was happening, where I'm trying to incorporate the new skills, I had my old way of doing things, and it's just not always aligning. And I think you're right that as the skills become embedded, as you go on throughout your career, where it feels much more natural, and then you do really connect with people as people still using the skills and the techniques that we've learned in our communication courses, but they become part of who you are as a clinician. Dr. Mikkael Sekeres: Nicely put. Your story is particularly poignant because the patient you described was dying from the very treatment that cured his leukemia. It's this, I'm going to use the term badlands again. It's this terrible badlands we sometimes find ourselves where, yes, the treatment has been successful, but at the cost of a human life. Do you think that as healthcare providers, we react differently when a patient is sick, from side effects to our recommendations, as opposed to sick from their disease? Dr. Ricky Leiter: I think we probably do. It's hard because I think every patient in every case pulls at us in different directions. And this case was Carlos, who I called him, it was such a challenging situation for so many reasons. He was young. He really couldn't communicate with us. We were talking to his mom. Like, there were so many layers to this. But I think you're right. that underlying this, there's a sense of “We did everything we could beautifully, to cure him of his disease, and now he's dying of that, and what does that mean for us as clinicians, physicians. That becomes really hard and hard to sit with and hold as we're going back every day. And I say that as the palliative care consultant. So I can only imagine for the oncology team caring for him, who had taken him through this, what that felt like. Dr. Mikkael Sekeres: Well, you describe, again, beautifully in the piece, how the nursing staff would approach you and were so relieved that you were there. And it was, you know, you got the sense- I mean, obviously, it's tragic because it's a young person who died, but you almost got the sense there was this guilt among the providers, right? Not only is it a young person dying, but dying from graft versus host disease, not from leukemia. Dr. Ricky Leiter: Absolutely. There was guilt because of what he was dying of, because of how he was dying that he was so uncomfortable and it took us so long to get his pain under control and we really couldn't get him that balance of pain control and alertness that we always strive for was pretty much impossible from the beginning. And so it was layer upon layer of distress and guilt and sadness and grief that we could just feel every day as we stepped onto the floor. Dr. Mikkael Sekeres: Yeah. I don't know if you've ever read- there's a biography of Henry Kaplan, who was considered the father of radiation therapy, where there was this incredible moment during his career when he presented at the AACR Annual Meeting the first cures for cancers, right? No one believed it. It was amazing, actually curing cancer. And then a couple years later, people started dribbling into his clinic with cancers because of the radiation therapy he gave, and he actually went into a clinical depression as a result of it. So it can affect providers at such a deep level. And I think there's this undiscussed guilt that permeates the staff when that happens. Dr. Ricky Leiter: Absolutely, absolutely. It's right there under the surface. And we rarely give ourselves the space to talk about it, right? To really sit down and say, how are we approaching this situation? How do we feel about it? And to sit with each other and acknowledge that this is horrible. It's a horrible situation. And we feel guilty and we feel sad and we feel grief about this. Dr. Mikkael Sekeres: It's been just terrific getting to know you and to read your piece, Ricky Leiternd, a we really appreciate your writing. Keep doing what you do. Dr. Ricky Leiter: Oh, thank you so much. It's a privilege to get the piece out there and particularly in JCO and to be here with you. So I really appreciate it. Dr. Mikkael Sekeres: Until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of ASCO's shows at asco.org/podcasts. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Ricky Leiter is from the Dana-Farber Cancer Institute.

Imaging of Gastrointestinal Graft-Versus-Host Disease

Radiology Imaging Cancer Podcasts | RSNA

Play Episode Listen Later Mar 7, 2025 15:33

Dr. Brandon K.K. Fields speaks with Dr. Jennifer Holter-Chakrabarty about her groundbreaking research on fluorine-18 fluorothymidine (FLT) PET in the imaging of gastrointestinal graft-versus-host disease (GVHD) after allogeneic stem cell transplantation. Together, they explore a potential future role for FLT-PET in detection of early and/or subclinical GVHD, which may serve to guide future treatment strategies for transplant patients in years to come. 18F-FLT PET and Blood-based Biomarkers for IdentifyingGastrointestinal Graft versus Host Disease after Allogeneic CellTransplantation. Holter-Chakrabarty and McNally et al. Radiology: Imaging Cancer 2025; 7(1):e240096.

blood cancer fields imaging oncology patient care radiology biomarkers mcnally gastrointestinal graft patient advocacy gvhd host disease rsna brandon k

Helene Schoemans, Elke Stienissen, and Kathy Goris on a consulting a patient advisory board to understand unmet needs of patients with GVHD in Europe

In conversation with...

Play Episode Listen Later Mar 3, 2025 27:06

Prof Helene Schoemans, Elke Stienissen, and Kathy Goris join us to discuss the importance of consulting a patient advisory board to understand unmet needs of patients with GVHD in Europe.Continue this conversation on social!Follow us today at...https://twitter.com/thelancethttps://instagram.com/thelancetgrouphttps://facebook.com/thelancetmedicaljournalhttps://linkedIn.com/company/the-lancethttps://youtube.com/thelancettv

europe patients consulting advisory board unmet needs gvhd

A “belt and suspenders” approach to PNH; oral pathogens exacerbate chronic GVHD; microbial metabolome changes may adversely impact CAR-T outcomes

Play Episode Listen Later Feb 21, 2025 19:09

In this week's episode, we'll hear about a “belt and suspenders” approach to paroxysmal nocturnal hemoglobinuria, or PNH. We'll review long-term efficacy data for danicopan—an oral complement factor D inhibitor recently approved as an add-on to C5 inhibitor therapy.After that: researchers show how oral pathogens may exacerbate chronic graft-versus-host disease. And they assess targeted interventions to mitigate these effects. Finally, we move from the oral to the gut microbiome. New findings suggest that intestinal dysbiosis, induced by antibiotics, may adversely affect outcomes among patients who are receiving CAR-T cell therapy.Featured Articles:Long-term efficacy and safety of danicopan as add-on therapy to ravulizumab or eculizumab in PNH with significant EVHOral inflammation and microbiome dysbiosis exacerbate chronic graft-versus-host diseaseAntibiotic-induced loss of gut microbiome metabolic output correlates with clinical responses to CAR T-cell therapy

medical chronic outcomes belt oral cart oncology medical research pathogens c5 hematology microbial suspenders gvhd pnh metabolome

The Role of Lifestyle Medicine in Chronic GVHD with Dr. Steven Pavletic

maryland chronic bethesda nih cutler lifestyle medicine graft gvhd host disease

Play Episode Listen Later Feb 13, 2025 25:48

Welcome to the third episode of ASTCT Talks' exclusive 8-part series, supported by an educational grant from Sanofi US. In this series, ASTCT President Dr. Corey Cutler sits down with authors from the latest Graft-versus-Host Disease and Late Effects Following Allogeneic Transplantation journal collection to discuss their research and its implications for patient care.In this episode, Dr. Cutler is joined by Dr. Steven Z. Pavletic, the GVHD and Late Effects Section and Myeloid Malignancies Program Director at the NIH in Bethesda, Maryland. Widely recognized as a titan in chronic GVHD research, Dr. Pavletic explores an emerging yet often overlooked area in transplantation medicine—lifestyle medicine.Together, they discuss the role of lifestyle interventions, including nutrition, exercise, sleep, and stress management, in improving long-term outcomes for patients with chronic GVHD. Dr. Pavletic highlights the growing body of evidence supporting these approaches and the urgent need for more research and clinical guidelines to help providers counsel patients effectively.Tune in for an eye-opening conversation on how small, practical changes can make a significant impact on quality of life and post-transplant recovery. To dive deeper into this topic, read Dr. Pavletic's full article here.

Beyond the Transplant: Navigating Graft-vs-Host Disease (GVHD)

The Bloodline with LLS

Play Episode Listen Later Jan 31, 2025 50:21

A stem cell transplant for blood cancer is just the beginning – what may come next for the patient can… The post Beyond the Transplant: Navigating Graft-vs-Host Disease (GVHD) first appeared on The Bloodline with LLS.

navigating transplants bloodline graft lls gvhd host disease

Nurse Practitioner Lisa Stewart Shares Her Extensive Experience with GVHD

stories nurses ash clinical caregivers steroids clinical trials nurse practitioners extensive sanofi dexamethasone lls bmt gvhd lisa stewart

Play Episode Listen Later Jan 30, 2025 18:34

In this episode, we sit down with Lisa Stewart, a nurse practitioner with more than 25 years of transplant nursing experience, currently working at the post-transplant BMT clinic at the Dana-Farber Brigham Cancer Center in Boston. Lisa provides invaluable insights into managing chronic and acute graft-versus-host disease (GVHD) and shares her expertise, stories, and advice for patients and caregivers navigating post-transplant life.Lisa describes her role in outpatient care, where the majority of her work focuses on managing chronic GVHD, a condition that is both a sign of a functioning immune system and a complex challenge. While mild GVHD can indicate that the transplant is effectively fighting diseases like leukemia or lymphoma, severe cases can lead to complications involving multiple organs. Lisa outlines the two major categories of GVHD: steroid-reactive and steroid-refractory, with the latter being particularly difficult to treat. Acute GVHD typically occurs within the first 100 days post-transplant and often impacts the skin, liver, or gut, whereas chronic GVHD can develop months or years later and affect a broader range of organs, including the eyes, mouth, lungs, and reproductive systems.Clinical trials have led to significant advancements in treatment, including drugs like Ruxolitinib and Rezurock, offering hope to patients who fail first-line steroid therapy. Lisa also highlights Axatilimab, a newer medication discussed at the 2023 ASH meeting, although its availability remains limited due to manufacturing challenges. Despite these breakthroughs, steroids remain the frontline treatment, though they often cause challenging side effects like hyperglycemia, insomnia, and weight gain.Lisa also emphasizes the critical role caregivers play in a patient's recovery, managing complex medication regimens and providing vital emotional and physical support. She notes that without strong support at home, a transplant may not be feasible, particularly in the crucial first six months post-transplant.The episode also touches on common post-transplant issues like oral GVHD, fatigue, and the importance of staying active. Lisa shares practical tips, such as using Dexamethasone rinses for oral GVHD and encouraging light activity to combat fatigue. She underscores the importance of early symptom reporting, especially for chronic GVHD, as prompt intervention can significantly improve outcomes.Lisa concludes with a heartfelt story of a young patient who faced severe complications, including acute respiratory failure and paralysis, but ultimately made a remarkable recovery, even regaining mobility and starting a family. Stories like his, Lisa says, are what keep healthcare providers inspired despite the challenges.We wrap up with a reminder about the resources available to patients and caregivers, encouraging early reporting of symptoms and proactive management. Lisa's wisdom and dedication shine through, offering hope and practical guidance for those navigating the complex world of post-transplant care.More:GVHD Alliance: https://www.gvhdalliance.orgLink to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutritionThank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/ 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/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

Chronic GVHD Survival Tips from Nurse Krista Wood

Play Episode Listen Later Jan 30, 2025 23:36

In today's episode, we talk with Krista Wood, a registered nurse with the Cell Therapy and Transplant Program at Victoria General Hospital in Halifax, Nova Scotia (Canada). Krista shares her invaluable insights and experiences working with patients dealing with chronic graft-versus-host disease (GVHD), a common complication following stem cell transplants. Our discussion delves into the importance of communication, post-transplant care, and finding joy and purpose during survivorship.Krista emphasizes that early detection and treatment of GVHD are critical. She encourages patients to report any changes, no matter how minor they may seem, and reassures them that healthcare teams are there to help. This open communication is vital, as post-transplant life can be overwhelming with fears of relapse or complications. Ensuring patients have direct access to their care team can ease their anxieties and foster trust.Routine health checks, like blood work and pulmonary function tests, play a crucial role in monitoring potential complications. Krista explains the importance of tracking liver enzymes, bone density, and lung function to catch and address issues early. She underscores that post-transplant care goes beyond the transplant itself, extending to overall health maintenance, including routine screenings like mammograms, dental care, and colorectal exams.Reconnecting with life post-transplant is another important theme. Krista encourages patients to rediscover the activities they loved before their illness, whether it's returning to work, volunteering, or pursuing hobbies. Work and social engagement provide purpose and can aid emotional recovery. For those who can't return to work, finding alternative ways to contribute, such as volunteering with organizations like the Leukemia & Lymphoma Society or HealthTree, can offer fulfillment and connection. (Note: the National Bone Marrow Transplant Link (nbmtLINK) has a peer mentor program as well, email info@nbmtlink.org if you'd like to be a peer or need a peer mentor. )Preparing for transplant and understanding GVHD beforehand is crucial. While some patients prefer to know everything, others may only want the basics. Krista and her team provide consistent education in manageable increments to help patients absorb key information. She explains factors that increase the risk of GVHD, such as donor characteristics and patient preconditioning, and stresses the importance of entering the transplant process in the best possible physical shape.Krista also highlights the importance of addressing sensitive topics like sexual health, which many patients are reluctant to discuss. She brings up these issues proactively, ensuring patients feel supported and have access to necessary resources.Finally, Krista shares stories of hope, including patients who, despite long-term challenges, have regained a sense of normalcy and fulfillment. She reminds us that while every patient's journey is unique, resilience and adaptation are common threads in their recovery.This episode is a testament to the critical role nurses like Krista play in guiding patients through this complex medical journey, offering care, education, and encouragement every step of the way.More:Leukemia & Lymphoma Society: https://www.lls.orgHealthTree Foundation: https://www.healthtree.orgGVHD Alliance: https://www.gvhdalliance.orgLink to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutritionThank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/ 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/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

Occupational Therapy and GVHD: Meet expert Carly Cappozzo

resilience practical occupational therapy sanofi lls recovery strategies holistic therapies caregiver support patient empowerment gvhd

Play Episode Listen Later Jan 30, 2025 25:44

In this episode, we talk to Carly Cappozzo, a senior occupational therapist specializing in graft-versus-host disease (GVHD) rehabilitation at a major cancer hospital. Carly shares her unique approach to patient care, emphasizing the importance of holistic and personalized therapy that empowers patients to regain their independence and identity post-treatment.Carly explains her role as an occupational therapist, detailing how she helps patients achieve independence in everyday tasks and rediscover activities that give their lives meaning. Her methods include activity analysis, breaking down tasks to identify barriers, and creating strategies to overcome them. She highlights the need for patient-centered care, ensuring therapy aligns with each individual's goals and preferences.Carly discusses her work in GVHD rehabilitation, particularly focusing on the relationship between skin, fascia, muscle tightness, and the nervous system. She underscores the value of gentle, prolonged stretching and calming the nervous system to improve mobility and reduce stress. She also addresses cancer-related fatigue, comparing it to a depleted energy "bank account," and stresses the importance of prioritizing activities that bring joy while conserving energy for essential tasks.Practical solutions for ocular GVHD are explored, including leveraging technology's accessibility features like text magnification and screen readers. Carly advises tailoring daily routines to maximize engagement in meaningful activities and adapting tasks to accommodate physical limitations. She highlights the importance of movement over exercise, recommending gentle, natural activity to improve well-being.Carly emphasizes the critical role of caregivers in fostering patient independence. She advises caregivers to balance support with opportunities for patients to contribute to daily life, thus maintaining a sense of purpose. Carly also shares inspiring stories of patients overcoming significant physical and emotional challenges through therapy, demonstrating resilience and achieving a fulfilling quality of life.The conversation concludes with advice for survivors and caregivers to approach GVHD recovery as a marathon rather than a sprint, emphasizing patience, consistency, and a collaborative approach to health and wellness.More:Seeing AI App: https://www.microsoft.com/en-us/ai/seeing-aiGVHD Alliance: https://www.gvhdalliance.orgLink to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutritionThank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/ 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/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

Inpatient BMT Nurse Josh Conklin on GVHD

university resilience nurses emerging chronic illness caregiving quality of life patient care sanofi conklin inpatient lls bmt bone marrow transplant gvhd immunosuppression

Play Episode Listen Later Jan 30, 2025 20:29

In this episode, we meet up with Josh Conklin, a seasoned bone marrow transplant (BMT) nurse at the University of Michigan Hospital, to explore his experiences, insights, and tips for managing chronic graft-versus-host disease (GVHD). With 11 years of inpatient experience, Josh offers a comprehensive view of the challenges and triumphs in caring for patients undergoing BMT.Josh explains that his primary role involves guiding patients through the most critical stages of their transplant journey, from chemotherapy conditioning to the stem cell infusion and the vulnerable recovery period afterward. He emphasizes the delicate balance required in managing GVHD, a condition that plays a dual role: while some GvHD is beneficial in suppressing cancer recurrence (graft-versus-leukemia effect), too much can lead to severe complications.Long-term immunosuppression is a cornerstone of GVHD management. Josh highlights the reliance on drugs like tacrolimus and, when necessary, steroids. However, we note the adverse effects of prolonged steroid use, such as muscle wasting, infections, and physical deconditioning. Emerging monoclonal antibody therapies are offering new hope, aiming to reduce these side effects.The discussion also sheds light on the psychological toll of repeated hospitalizations and the role caregivers play in patient success. Josh describes caregivers as essential for monitoring symptoms, administering medications, and providing emotional support. However, he acknowledges the significant strain caregiving can impose, especially during the critical first 100 days post-transplant when patients are highly vulnerable.Josh shares stories of resilience and purpose among his patients, underscoring the importance of a positive outlook and having something meaningful to strive for. He reflects on the impact of a strong support system, whether it's family, friends, or peer mentorship programs, in helping patients navigate their “new normal.” Despite the challenges, Josh finds inspiration in his patients' ability to find joy and purpose, even in difficult circumstances. He shares his experience with one woman in particular.This heartfelt conversation highlights the physical, emotional, and relational dynamics of BMT care, offering a glimpse into the profound impact of dedicated healthcare professionals like Josh.More:GVHD Alliance: https://www.gvhdalliance.orgLink to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutritionThank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/ 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/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

Oral and Skin GVHD Tips and More from MSKCC RN Sarah Bugen

skin caregivers oral hydration sunscreen sanofi memorial sloan kettering cancer center lls bone marrow transplant caregiver support gvhd orgthank cerave gi tract cetaphil mskcc

Play Episode Listen Later Jan 30, 2025 25:24

In this episode, we sit down with Sarah Bugen, a nurse at Memorial Sloan Kettering Cancer Center, who shares her expertise on managing life after a blood or bone marrow transplant, particularly in relation to chronic graft-versus-host disease (GVHD). The conversation centers on practical advice for patients and caregivers navigating recovery and maintaining quality of life.Regarding Oral GVHD, Sarah emphasizes the importance of oral health post-transplant, recommending soft toothbrushes, alcohol-free mouthwash, and avoiding irritants like spicy or acidic foods. She suggests soft, hydrating foods and stresses the need for regular dental checkups with oncologist approval. Hydration is vital for managing dry mouth, with a goal of 2-3 liters of fluids daily. Also, sugarless candy or gum can help stimulate saliva production.For nutrition, Sarah advises increasing caloric intake with protein powders, full-fat products, and small, frequent meals. She also highlights the value of bland diets and electrolyte packets for hydration. Avoiding triggers like dairy, caffeine, and greasy foods can minimize gastrointestinal discomfort (and even GVHD of the GI Tract), while clean cooking practices ensure safety during recovery.Skin care is another focus. Sarah recommends fragrance-free, gentle products like CeraVe and Cetaphil and suggests applying moisturizer after a shower to lock in hydration. Sunscreen, protective clothing, and sun hats are essential, even in winter, to protect sensitive post-transplant skin.Physical activity is vital for rebuilding strength and improving mental health. Sarah advises patients to start slow with light activities like walking or stretching and gradually increase as tolerated. Physical therapy exercises should be integrated into daily routines, and adequate rest is crucial after any activity. Even though it may be counter-intuitive, continuous movement is key in the battle against fatigue.Caregivers also play a pivotal role. Sarah underscores the importance of open communication with the medical team and notes that caregivers can support medication management, track progress, and join support groups for additional resources. Caregivers are encouraged to celebrate small victories and take care of their own mental health, as they are an essential part of the recovery process.Finally, Sarah shares an incredible survivor story, and reflects on the resilience in her patients and the importance of celebrating milestones like “transplant birthdays.” She encourages patients to set realistic goals, maintain hope, and focus on incremental progress. Sarah leaves us with an inspiring reminder to be patient with ourselves, celebrate every achievement, and never stop fighting.Resources:Link to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutritionGVHD Alliance: https://www.gvhdalliance.orgThank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/ 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/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

Licensed Social Worker Jeannie Wiarda's Guide to GVHD and Survivorship

Play Episode Listen Later Jan 30, 2025 28:34

In this episode, we welcome Jeannie Wiarda, LMSW, a Medical Social Worker at the Adult Blood and Bone Marrow Transplant Center at Corewell Health in Grand Rapids, Michigan. Jeannie has been a Medical Social Worker at Corewell Health for 20 years including 14 years in Hospice and Palliative Care Inpatient; time in the Emergency Room prior to that, and has currently spent three years in bone marrow transplant. Jeannie provides insight into her work with transplant patients, particularly those navigating chronic graft-versus-host disease (GVHD), offering a comprehensive view of her role and strategies for supporting survivors through their journeys.Jeannie explains that her role as a social worker encompasses the entire transplant process—from the pre-transplant evaluation to post-transplant care. She helps patients address barriers like financial challenges, housing, and psychological trauma, tailoring support to each individual's unique needs. Her involvement extends through the hospital stay and into recovery, offering continuity of care during this vulnerable time.A key theme is the interplay between stress, trauma, and the transplant experience. Jeannie highlights the impact of chronic stress on the brain, emphasizing the importance of caregivers who provide practical and emotional support. She underscores the necessity of self-care for caregivers, advocating for planned respite and support systems to sustain their well-being.Jeannie shares actionable strategies for patients and caregivers to find hope and purpose amid the challenges of GVHD. These include maintaining a healthy lifestyle, engaging in fulfilling activities, and staying connected with others. She stresses the value of education, encouraging patients to leverage resources like the nbmtLINK, BMT InfoNet, LLS, and the GVHD Alliance to empower themselves with knowledge and advocacy skills.Jeannie emphasizes finding ways to “live life” despite the limitations GVHD may impose. She recalls stories of patients adapting activities to their current abilities, referencing another podcast by the LINK where we talked to a survivor who switched to an e-bike for outdoor exploration. Jeannie also advocates for fostering connections through support groups and meaningful activities, such as volunteering, to regain a sense of purpose.Jeannie concludes with advice on processing grief and fear, embracing compassion, and accessing professional mental health resources, including cognitive behavioral therapy such as Eye Movement Desensitization and Reprocessing (EMDR), for addressing trauma. Her compassionate, holistic approach demonstrates the profound impact of social work in transforming survivorship into a journey of resilience and empowerment.More:GVHD Alliance: https://www.gvhdalliance.orgLink to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutritionBook: The Body Keeps the Score: https://www.amazon.com/Body-Keeps-Score-Healing-Trauma/dp/0143127748Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/ 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/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

Season 16 Trailer

ערוץ הפודקאסטים של רדיו תל אביב

Play Episode Listen Later Jan 28, 2025 3:36

Season 16 of Marrow Masters, Sponsored by Sanofi, will be released January 30, 2025. The National Bone Marrow Transplant Link, established in 1992, strives to help patients, caregivers, and families cope with the psychosocial challenges of bone marrow transplant, from diagnosis through survivorship. Season 16 of our show will focus on the best tips for dealing with Chronic GVHD. Top notch health care professionals will share their compassion, best advice, insight and caregiving tips regarding chronic GVHD. This season will offer education, tried and true solutions, stories of hope and more. 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/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

sanofi gvhd

מדובר באבן דרך משמעותית בתחום הרפואה המשקמת - יקי ינאי בדוקטורס ברדיו תל אביב, יום רביעי, 15 בינואר, 2025

Play Episode Listen Later Jan 15, 2025 12:14

יקי ינאי, מנכ"ל ונשיא פלורי Pluri על אישור ה-FDA לראשונה בטיפול בתאי MSC של חברת Mesoblast עבור ילדים עם מחלת "השתל נגד המאחסן" (GVHD) שאינם מגיבים לטיפול תרופתי קיים

gvhd

Pharma and Biotech Daily: Navigating Industry Shifts and Strategic Decisions

Pharma and BioTech Daily

Play Episode Listen Later Dec 20, 2024 1:10

Good morning from Pharma and Biotech daily: the podcast that gives you only what's important to hear in Pharma and Biotech world.Vertex Pharmaceuticals experienced a 13% decrease in its share price following the disappointing results of its non-opioid pain therapy, suzetrigine, in a Phase II trial. Meanwhile, major players like Bayer, Bristol Myers Squibb, and Johnson & Johnson announced significant layoffs, impacting hundreds or even thousands of employees. Roche also faced setbacks as their Parkinson's drug failed to meet expectations in a mid-stage trial. Novartis made the decision to cut jobs in both Boston and Munich, while Mesoblast celebrated FDA approval for a mesenchymal stromal cell therapy for GVHD.On a more positive note, the FDA confirmed that there is no shortage of Lilly's GLP-1s and provided compounding pharmacies with a grace period before implementing new regulations to halt their production. Intelligencia AI's accurate pre-ASH predictions for high-potential biotechs demonstrated the efficacy of its predictive AI methodology. Amidst these challenges and changes, the biopharma industry is navigating evolving market dynamics and making strategic decisions to adapt to the shifting landscape.

Episode 124: AML Series, Pt 10 - Allogeneic transplant for AML

The Fellow on Call

Play Episode Listen Later Dec 11, 2024

In today's episode, we welcome back Dr. Amar Kelkar for part 2 of our two-part discussion on allogeneic transplant. In this episode, we build on our prior discussion regarding transplant, this time focusing on transplant for the treatment of AML. Episode contents: - What are the different conditioning regimens available? - How do we decide which regimen is optimal for our patients? - What is the role of MRD testing? - What is the role of maintenance therapy post-transplant? - What are treatment options for GVHD? - A discussion on racial disparities in transplant ****Get paid to participate in market research surveys: https://affiliatepanel.members-only.online/FOC_24?utm_campaign=FOC&utm_source=email&utm_medium=email** Want to review the show notes for this episode and others? Check out our website: https://www.thefellowoncall.com/our-episodesLove what you hear? Tell a friend and leave a review on our podcast streaming platforms!Twitter: @TheFellowOnCallInstagram: @TheFellowOnCallListen in on: Apple Podcast, Spotify, and Google Podcast

spotify apple podcast google podcasts transplants aml mrd foc gvhd allogeneic

Oral Chronic Graft-Versus-Host Disease and Oral Health After Allogeneic Hematopoietic Cell Transplantation — What the Care Team Needs To Know

chronic cutler oral health transplantation graft care team gvhd allogeneic host disease hematopoietic

Play Episode Listen Later Dec 11, 2024 22:53

Welcome to the second installment of an exclusive 8-part ASTCT Talks series, supported by an educational grant from Sanofi US. In this series, ASTCT President Dr. Corey Cutler speaks with authors from each article in the latest Graft versus Host Disease and Late Effects Following Allogeneic Transplantation Journal collection. In this episode, Dr. Cutler is joined by Dr. Nathaniel S. Treister, a recognized expert in oral medicine, to discuss the intricacies of oral chronic GVHD and its impact on oral health following allogeneic hematopoietic cell transplantation. They explore the diagnostic criteria, effective management strategies, and long-term care considerations for patients, highlighting the importance of both supportive care and multidisciplinary collaboration. For further insights, read Dr. Treister's article, “Oral Chronic Graft-versus-Host Disease and Oral Health after Allogeneic Hematopoietic Cell Transplantation — What the Care Team Needs to Know”, and stay tuned as Dr. Cutler and authors continue to provide a comprehensive guide on cGVHD management through this supplement series.

Exploring the ecosystem of extramedullary myeloma; role of ruxolitinib for pediatric acute GvHD; “YAP”-ing about YAP1 and thrombopoiesis in ITP

medical ecosystem pediatric acute oncology medical research hematology myeloma gvhd

Play Episode Listen Later Nov 14, 2024 18:37

In this week's episode we'll learn about new explorations in extramedullary myeloma. Then, we'll hear about the role of ruxolitinib in children with acute GvHD. Finally: yapping about YAP1 as a new treatment target in immune thrombocytopenia. Featured Articles:Spatial transcriptomics reveals profound subclonal heterogeneity and T-cell dysfunction in extramedullary myelomaRuxolitinib for pediatric patients with treatment-naïve and steroid-refractory acute graft-versus-host disease: the REACH4 studyYAP1 regulates thrombopoiesis by binding to MYH9 in immune thrombocytopenia

Understanding Ocular Graft-versus-Host Disease to Facilitate an Integrated Multidisciplinary Approach

integrated cutler facilitate transplantation graft ocular luo gvhd multidisciplinary approach host disease

Play Episode Listen Later Oct 29, 2024 22:48

Welcome to the first installment of an exclusive 8-part ASTCT Talks series, supported by an educational grant from Sanofi US. In this series, ASTCT President Dr. Corey Cutler speaks with authors from each article in the latest ASTCT Journal of Transplantation and Cellular Therapy GVHD supplement. In this opening episode, Dr. Cutler is joined by Dr. Katie Luo, a leading ophthalmologist, to discuss the complexities of ocular GVHD, why it goes beyond “just dry eye,” and how an integrated, multidisciplinary approach can offer better patient outcomes. For further insights, read Dr. Luo's full article, “Understanding Ocular Graft-versus-Host Disease to Facilitate an Integrated Multidisciplinary Approach”, and stay tuned as Dr. Cutler delves into each article with its author, providing a comprehensive guide on GVHD management through this entire supplement series.

JCO Article Insights: HLA-Mismatched Unrelated Donor HCT With PTCy

Journal of Clinical Oncology (JCO) Podcast

Play Episode Listen Later Oct 28, 2024 9:38

In this JCO Article Insights episode, Alexandra Rojek provides a summary on "Post-Transplant Cyclophosphamide–Based Graft-Versus-Host Disease Prophylaxis Attenuates Disparity in Outcomes Between Use of Matched or Mismatched Unrelated Donors" by Schaffer et al published in the Journal of Clinical Oncology July 17th, 2024. TRANSCRIPT Alexandra Rojek: Hello and welcome to JCO Article Insights. I'm your host, Alexandra Rojek, and today we will be discussing an original report published in the October 1st issue of JCO titled, “Post-Transplant Cyclophosphamide–Based Graft-Versus-Host Disease Prophylaxis Attenuates Disparity in Outcomes Between Use of Matched or Mismatched Unrelated Donors,” by Shaffer et al. The CIBMTR registry study set out to compare outcomes of patients undergoing allogeneic stem cell transplantation hematologic malignancies by HLA antigen matching status as well as by the type of GVHD prophylaxis regimen received either calcineurin inhibitor-based prophylaxis or post-transplant cyclophosphamide or PTCy. This study included patients reported to CIBMTR from January 2017 to June 2021 with AML, ALL or MDS, and required that they have undergone allotransplant with either a calcineurin inhibitor based so tacro or cyclosporine, GVHD prophylaxis, or PTCy, which included a calcineurin inhibitor or sirolimus with or without MMF and ATG. Matched unrelated donors were defined as an 8 out of 8 HLA match. And mismatched unrelated donors were defined as HLA mismatched at any single locus or 7 out of 8. The primary objective of the study aimed to compare overall survival or OS and GVHD and relapse-free survival (GRFS) within and between matched unrelated donors versus mismatched unrelated donors separated by calcineurin inhibitor versus PTCy based GVHD prophylaxis. GRFS was defined as survival without grade 3 to 4 acute GVHD, moderate to severe chronic GVHD requiring systemic therapy or relapse. 10,025 patients were included from 153 centers, with a median follow up of over 36 months. Mismatched unrelated donor recipients were made up of 22% minority ancestry patients as compared to just 8% of patients receiving a matched unrelated donor allo transplant, showing an enrichment for patients of minority ancestry in the mismatched unrelated donor group. Just under 10% of patients were of minority ancestry in the study overall, reflective of challenges in transplant care for these patients, which may include inferior access to care, fewer available and suitably matched donors, among other factors. 54% of all patients were transplanted for AML and 29% for MDS. 45% of patients received myeloablative conditioning, 25% received regimens containing ATG, and 23% overall received PTCy with either a calcineurin inhibitor or sirolimus as well as MMF. Among patients receiving PTCy, the authors did not find differences in overall survival by degree of HLA matching, whereas among patients receiving calcineurin inhibitor-based prophylaxis, there remained survival differences by HLA matching status. When comparing matched unrelated donor calcineurin inhibitor patients with PTCy matched unrelated donor patients, the PTCy arm had better OS, and the mismatched unrelated donor group who received PTCy had similar OS as well. For GRFS, matched unrelated donor and mismatched unrelated donor PTCy patients had no difference in GRFS, similar to the trend the authors see with overall survival. But these patients also had better GRFS than matched unrelated donor patients receiving calcineurin inhibitor-based prophylaxis. Within each prophylaxis arm, there was no difference in GRFS by HLA matching status. HLA mismatched patients receiving PTCy were less likely to experience GRFS than HLA mismatched patients receiving calcineurin inhibitor-based prophylaxis. The authors saw similar differences in comparative trends when subgrouping patients based on conditioning intensity and additionally did not find differences in GRFS and OS by ATG exposure. When looking at patients with minority ancestry, those patients who received a match unrelated donor or mismatched unrelated donor with PTCy had comparable outcomes to non-Hispanic white patients. Additionally, among minority ancestry patients, there was a significant benefit in both GRFS and OS in the PTCy groups as compared to calcineurin inhibitor-based prophylaxis. When examining other specific toxicities included in the composite GRFS endpoint, such as GVHD rates among PTCy patients, the authors note that patients receiving a matched unrelated donor had similar rates of grade 3 to 4 acute GVHD but lower rates of moderate to severe chronic GVHD requiring systemic therapy. There appears to be signal that among PTCy patients, HLA matching reduced rates of moderate to severe chronic GVHD compared to mismatched unrelated donor patients receiving PTCy. These same trends also held when the authors looked at non relapse mortality with no significant differences within the PTCy groups by HLA matching status but reduced non relapse mortality compared to both calcineur and inhibitor-based groups. However, notably, there was a greater risk of relapse among matched unrelated donor PTCy patients than matched unrelated donor calcineurin inhibitor patients, although this risk was comparable between mismatched unrelated donor patients by type of prophylaxis. The authors note that this has also been observed in other retrospective cohorts and may be confounded by differences in conditioning intensity between these cohorts of matched unrelated donor patients, affecting the risk of relapse. Finally, the authors also evaluate whether expansion of donor search criteria to mismatch donors from full HLA matching would increase availability of young donors from minority ancestry patients, and the study noted striking increases for all subgroups examined. This study fits nicely with the BMT CTN 1703 trial published in the recent past, which has showed the superiority of PTCy with the calcineurin inhibitor and MMF when compared with conventional calcineurin inhibitor based immune prophylaxis for reduced intensity matched related donor and matched unrelated donor allotransplant. Of note, very few patients with one HLA antigen mismatch were enrolled on that study. However, others have shown the feasibility of PTCy in the mismatched unrelated donor setting, which has led to its adoption in practice. Although less than a quarter of patients included in this current study received PTCy overall, the findings clearly are aligned with the BMT CTN 1703 study, which is likely to change clinical practice in the longer term in this field. As the accompanying editorial in JCO, written by Dr. Chakravarty nicely lays out, the differences between this study and the EBMT registry study, also published in this issue of JCO are subtle but worthy of note. While both studies show that mismatched unrelated donor patients had worse OS and GRFS than those receiving matched unrelated donor transplants, and then among matched unrelated donor patients the addition of PTCy improved GRFS and OS, there is discordance between the studies whether the addition of PTCy abrogates the effect of HLA mismatching on GRFS and OS. As this editorial points out, there are strikingly different rates of T cell depletion with ATG between the US and Europe, which may account for differences in comparator arms that lead to this discordance. There are several very exciting clinical trials ongoing that will aim to answer some of these outstanding questions regarding comparisons of PTCy and T cell depletion, which the field eagerly looks forward to reviewing. In summary, this registry study of patients receiving allo transplant with matched unrelated donor or mismatched unrelated donor and calcineurin inhibitor or PTCy based GVHD prophylaxis, most notably shows that for patients who may not have a matched unrelated donor available, the addition of PTCy to a mismatched unrelated donor allo transplant allows for improved outcomes after transplant in toxicities and survival. This is most significant for patients of minority ancestries who usually have fewer matched unrelated donors available in registry searches. Improving the transplant options available to these groups of patients is of critical importance in improving equitable access to care for all of our patients. And this study, although retrospective in nature, provides an important understanding of our progress to date and suggests directions for future investigation may indeed be very feasible to continue to close these gaps in care for patients in need of an allo transplant for hematologic malignancies. This is Alexandra Rojek. Thank you for listening to JCO Article Insights. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all ASCO shows at asco.org/podcasts. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

europe journal os improving hispanic donor mds shaffer aml asco schaffer unrelated matched mismatched atg hla mmf gvhd jco chakravarty cibmtr ebmt

AGAVE-201 Study - FDA Approval of Axatilimab for Chronic Graft-versus-Host Disease (cGVHD)

Oncology Brothers

Play Episode Listen Later Oct 15, 2024 21:34

In this episode of the Oncology Brothers Podcast, hosts Drs. Rohit and Rahul Gosain welcome Dr. Shernan Holtan from Roswell Park Comprehensive Cancer Center to discuss the recent approval of Axatilimab, a novel monoclonal antibody for the treatment of chronic graft-versus-host disease (GVHD). Join us as we explore the differences between acute and chronic GVHD, the challenges faced by community oncologists in managing this condition, and the exciting results from the AGAVE-201 study that led to Axatilimab's FDA approval. Dr. Holtan shares insights on the drug's mechanism of action, its dosing regimen, and the importance of patient-reported outcomes in assessing treatment efficacy. We also delve into the safety profile of Axatilimab, discussing potential side effects, infusion reactions, and the significance of partnering with tertiary care centers for optimal patient management. Whether you're a healthcare professional or simply interested in the latest advancements in oncology, this episode provides valuable information on managing chronic GVHD and improving patient quality of life. Don't forget to like, subscribe, and check out our other episodes for more discussions on recent approvals and the current standard of care for various malignancies! #OncologyBrothers #GVHD #Axatilimab #ChronicGVHD #CancerCare #Podcast Website: http://www.oncbrothers.com/ X/Twitter: https://twitter.com/oncbrothers Contact us at info@oncbrothers.com

study fda chronic drs rohit graft agave fda approval gvhd host disease

Outpatient CAR T: Navigating Logistics and Patient Care

Play Episode Listen Later Oct 14, 2024 37:22

This episode of ASTCT Talks dives into outpatient CAR T therapy, exploring logistics, challenges, and success strategies. Host Dr. Zahra Mahmoudjafari leads a panel of experts to share insights from their innovative programs. The panel features Robb Richards, Administrative Director of Cell Therapy and Transplant at Penn Medicine; Dr. Katie Gatwood, Clinical Pharmacy Specialist at Vanderbilt University Medical Center; and Dr. Taha Al-Juhaishi, Associate Director at the University of Oklahoma's Transplant and Cell Therapy Program. Topics include outpatient program structures, toxicity management, and the evolving role of cell therapies beyond hematologic malignancies. About the Host:Dr. Zahra Mahmoudjafari is a board-certified oncology pharmacist and Clinical Pharmacy Manager in Hematologic Malignancies at the University of Kansas Cancer Center. She earned her PharmD and MBA from UMKC and focuses on clinical and operational management of cell and gene therapies. Dr. Mahmoudjafari is active in HOPA, ATOPP, and ASTCT and was honored with ASTCT's Pharmacy SIG Lifetime Achievement Award and ASCO's 40 Under 40 in Cancer Award. Meet the Panel: Robb Richards has over 20 years of oncology experience, with roles spanning private practice, IT, and leadership in healthcare systems. At Penn Medicine, he oversees CAR T therapy operations, expanding services into community hospitals. He holds degrees from Drexel University and St. Joseph's University. Dr. Katie Gatwood is a Board-Certified Oncology Pharmacist at Vanderbilt University Medical Center, where she leads the PGY2 Oncology Residency Program and chairs the ASTCT Pharmacy SIG. Her expertise spans CAR T therapy, transplant conditioning, and GVHD therapies. Dr. Gatwood is an award-winning practitioner and has authored several publications on oncology pharmacy practice. Dr. Taha Al-Juhaishi is an attending physician and clinical investigator at OU Stephenson Cancer Center, Oklahoma's only NCI-designated center. He serves as associate director of the Hematopoietic Stem Cell Transplantation and Cell Therapy program and leads several clinical trials. Dr. Al-Juhaishi trained at Weill Cornell Medicine, VCU, and MD Anderson Cancer Center. Listeners will gain valuable insights into the complexities of managing outpatient CAR T therapy and strategies to enhance patient care.

Bridging the Gap: Addressing Disparities in GVHD Care

NEJM This Week — Audio Summaries

Play Episode Listen Later Sep 25, 2024 42:10

In this episode of ASTCT Talks, host Dr. Andrés Gómez De León is joined by Dr. Nandita Khera and Dr. Alexandra Gomez Arteaga to explore the critical issue of disparities and barriers to care in graft-versus-host disease (GVHD). The discussion delves into the factors contributing to unequal access to hematopoietic cell transplantation, such as socioeconomic status, race, and ethnicity, both in the U.S. and globally. The guests highlight initiatives like the ACCESS Initiative by ASTCT and the National Marrow Donor Program, aimed at addressing these disparities through advocacy, awareness, and training for junior faculty. They also discuss the importance of caregiver support, clinical trial accessibility, and the broader impacts of GVHD on patients' lives. Tune in to gain valuable insights into ongoing efforts to promote equitable access to life-saving treatments. About Dr. Nandita Khera Nandita Khera is a Professor of Medicine in the Mayo Clinic College of Medicine and a Consultant in the Division of Hematology/ Oncology at Mayo Clinic Arizona. She treats patients with hematological malignancies and some solid tumors, especially those needing blood and marrow transplant/cell therapy (BMT/CT). Her research focuses on improving the delivery of care to patients with cancer including those undergoing BMT/CT to help them be better prepared for the psychosocial and financial consequences of the treatment. She has published several papers in outcomes, late effects, and quality of care in cancer patients and provides mentorship to trainees interested in projects in these areas. She has been a member and has held leadership positions at Mayo Clinic and in the various committees in organizations/ societies in hematology and BMT/CT.. She was the working committee co-chair for the Health Services and International Issues Working committee of CIBMTR from 2015 to 2020 and a member of BMT-CTN SOSS Late Effects committee in 2020. As the co-chair of Dissemination and Implementation committee at BMT CTN currently, she leads efforts in improving translation of evidence into practice in the field of BMT. She is the Director of Community or Clinical Practice at ASTCT. About Dr. Alexandra Gomez Arteaga Dr. Alexandra Gomez Arteaga is an Assistant Professor at Weill Cornell Medicine/NewYork-Presbyterian Hospital and directs the Allogeneic Bone Marrow Transplant Service and the Advanced Fellowship in Bone Marrow Transplantation. She earned her MD from Los Andes University, completed her residency at the University of Miami, her Hematology/Oncology fellowship at Weill Cornell, and her BMT advanced fellowship at Memorial Sloan Kettering Cancer Center. Dr. Gomez's research focuses on improving outcomes in allogeneic stem cell transplantation for leukemia and myeloid malignancies, with an emphasis on young adults and alternative donors. Her work also addresses the critical need to decrease disparities in access to transplantation for minority populations, a cause she champions across her clinical practice, research, and advocacy. She currently serves as the Co-Chair for the Junior Faculty Initiative within the ASTCT ACCESS Initiative. About Dr. Andrés Gómez De León Dr. Andrés Gómez De León (@GomezDLeonMD) is an Associate Professor at Universidad Autonoma de Nuevo Leon in Monterrey Mexico and an ASTCT Content Committee member with an interest in acute leukemias and transplant and cell therapies in low and middle income countries.

NEJM This Week — September 19, 2024

Play Episode Listen Later Sep 18, 2024 32:37

Featuring articles on long-term oxygen therapy in severe hypoxemia, reducing opioid overdose deaths, blocking CSF1R in chronic GVHD, and pomalidomide in hereditary hemorrhagic telangiectasia; a review article on central nervous system vasculitis; a case report of a man with confusion and kidney failure; a Medicine and Society on house staff unionization revisited; and Perspectives on ethical challenges in pragmatic and cluster RCTs, on the sense and sensibility of sensitivity analyses, and on there being no one in charge.

news doctors society medicine hospitals patients medical perspectives physicians primary care medical research clinical practice nejm hospitalists rcts new england journal of medicine medical journal gvhd

Protective role of neonatal CMV infection in B-ALL; GVHD targets organoid-forming bile duct stem cells; seven-year outcomes for venetoclax-ibrutinib therapy in MCL

therapy medical targets infection conversely stem cells oncology protective medical research bile mrd neonatal duct hematology organoids gvhd tgf ibrutinib year outcomes

Play Episode Listen Later Aug 22, 2024 16:56

In this week's episode we'll learn how cytomegalovirus infection early in life depletes preleukemic cells in a mouse model of B-cell acute lymphoblastic leukemia. After that we'll discuss new research, where GVHD targets organoid-forming bile duct stem cells in a TGF-beta-dependent manner. Conversely, a TGF-beta inhibitor protects these stem cells against GVHD and mitigates biliary dysfunction. Finally, we'll hear about the seven-year outcomes for venetoclax-ibrutinib in relapsed or refractory mantle cell lymphoma. In addition to long-term survival benefits, researchers report durable treatment-free remissions and effective retreatment in patients with MRD-negative complete responses. Featured Articles: Early-life infection depletes preleukemic cells in a mouse model of hyperdiploid B-cell acute lymphoblasticleukemiaGVHD targets organoid-forming bile duct stem cells in a TGF-β–dependent mannerSeven-year outcomes of venetoclax-ibrutinib therapy in mantle cell lymphoma: durable responses andtreatment-free remissions

Men's Sexual Health and GVHD w Dr. Jose Flores Ramirez of MSK

Play Episode Listen Later Aug 8, 2024 28:26

This epsiode includes content related to reproductive organs and sexual health and may not be suitable for all listeners.In this podcast, we welcome Dr. Jose Flores, an expert in sexual and reproductive medicine at New York's Memorial Sloan Kettering Cancer Center. We dive deep into the often challenging but crucial topic of male sexuality, particularly in the context of cancer treatment and graft versus host disease (GVHD).Dr. Flores begins by distinguishing between sexual dysfunction and erectile dysfunction (ED). He emphasizes that sexual dysfunction encompasses various issues beyond just achieving erections, such as ejaculation problems, orgasm issues, decreased sex drive, and changes in penile shape. This broader understanding is essential when discussing sexual health with patients.The prevalence of ED after cancer treatment is notably high, with up to 60-70% of men experiencing it post-chemotherapy, and even higher rates following pelvic surgery, specifically. Low testosterone levels also contribute significantly to sexual dysfunction, particularly after treatments targeting the pelvic area.A critical aspect of addressing ED is breaking the wall of silence around it. Dr. Flores stresses the importance of open communication between patients and healthcare providers. Initiating conversations about sexual health can lead to better assessments and treatments. He outlines the initial steps in diagnosing ED, including patient questionnaires and lab tests, and underscores the need for healthcare providers to proactively ask patients about their sexual health.The discussion then shifts to the impact of GVHD on sexual function. Dr. Flores notes that about 70% of men post-bone marrow or stem cell transplant suffer from low testosterone and ED. Unfortunately, without intervention, these issues do not typically resolve on their own. Patients must seek help to explore treatment options.Dr. Flores explains the ED treatment model, which follows a stepwise approach. The first step includes lifestyle modifications and the use of PDE-5 inhibitors like Viagra and Cialis. If these are ineffective, injection therapy is the next step, followed by mechanical aids like penile pumps and, as a last resort, penile implants.Myths and realities of PDE-5 inhibitors are addressed, clarifying that these medications require proper usage, including an empty stomach for Viagra and sufficient time for absorption for Cialis, along with sexual stimulation to be effective. Proper education on these aspects can significantly enhance their effectiveness.Low testosterone, particularly after cancer treatment, is another major topic. Dr. Flores discusses the complexities of testosterone replacement therapy (TRT), including potential risks like polycythemia, effects on fertility, and the necessity of screening for conditions like sleep apnea and prostate cancer before starting treatment. He advises patients to preserve fertility before undergoing cancer treatments and outlines options for those with compromised fertility post-treatment.The conversation concludes with Dr. Flores urging patients to be proactive about their sexual and reproductive health. He highlights the importance of seeking specialized care and the positive impact it can have on overall quality of life. Throughout the discussion, Dr. Flores's compassionate approach underscores the importance of addressing these sensitive issues openly and effectively.Memorial Sloan Kettering Cancer Center: https://www.mskcc.orgInternational Index of Erectile Dysfunction: https://www.uptodate.comTestosterone Replacement Therapy Information: https://www.urologyhealth.orgThis season is made possible thanks to donations from Syndax and Incyte.https://syndax.com/https://incyte.com/ Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

Caregiver Perspective: Chronic Graft Versus Host Disease: Meet Angie Giallourakis of Elephants and Tea

meditation cancer drawing elephants tea chronic motivated caregivers stress management caregiving yoga nidra aml graft complementary medicine bone marrow transplant osteosarcoma gvhd host disease incyte

Play Episode Listen Later Aug 8, 2024 37:24

In today's podcast, we have the pleasure of speaking with Angie Giallourakis, a dedicated advocate and founder of the Steven G. Cancer Foundation and Elephants and Tea. Angie shares her powerful story of being a caregiver to her son Steven, who battled cancer twice. Steven was first diagnosed with stage four osteosarcoma in 2006, and later with secondary acute myelogenous leukemia (AML) in 2008, necessitating a bone marrow transplant.Angie recounts the emotional and physical toll of Steven's journey, describing the intense periods of treatment and the unexpected challenges they faced. After his bone marrow transplant, Steven experienced graft-versus-host disease (GVHD). Angie shares vivid anecdotes, including a harrowing moment when Steven's salivary glands swelled, causing his face to balloon. This incident, among others, highlights the unpredictable nature of GVHD and the constant vigilance required from caregivers.Angie emphasizes the importance of stress management for caregivers. She advocates for finding personal ways to cope, whether through exercise, yoga, meditation, or prayer. Her own methods include Yoga Nidra, a type of meditation, and seeking solace in prayer. She also stresses the importance of good nutrition and staying hydrated, which can be challenging during long hospital stays.Drawing from her experiences, Angie advises caregivers to seek help when needed and to communicate openly with their loved ones and medical teams. She underscores the necessity of validating the patient's pain and symptoms, as Steven's experience with inflammation throughout his body was initially dismissed by some as psychological.The conversation shifts to Angie's founding of the Steven G. Cancer Foundation. Motivated by the outdated treatments Steven received, she aimed to raise awareness and fund research for adolescent and young adult (AYA) cancer. She also talks about Elephants and Tea, a magazine by and for cancer patients, founded with her son Nick. The magazine provides a platform for unfiltered stories from cancer patients and has expanded to include workshops, community support, and therapeutic resources.Angie's message to new caregivers is clear: understand the potential challenges, communicate effectively, and don't hesitate to ask for and accept help. She highlights the importance of social support, both for patients and caregivers, to navigate the emotional and physical demands of cancer treatment.As we wrap up, Angie encourages listeners to reach out to organizations, consume available resources, and connect with others in similar situations. Her final words resonate with a message of hope and validation: you are not alone in this journey.More:Steven G. Cancer Foundation: https://www.stevengcancerfoundation.orgElephants and Tea: https://www.elephantsandtea.comNational 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.This season is made possible thanks to donations from Syndax and Incyte.https://syndax.com/https://incyte.com/ Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

Navigating Psychological Distress of Graft Versus Host Disease: Insights from Dr. Hermi Amonoo

Play Episode Listen Later Aug 8, 2024 27:13

In this episode, we speak with Brigham and Women's Hospital and Dana Farber Cancer Institute's Dr. Hermioni "Hermi" Amonoo, an esteemed psychiatrist, psychosocial oncologist, and associate professor at Harvard Medical School. Our discussion centers on the psychological distress associated with graft versus host disease (GVHD) following a bone marrow stem cell transplant. Dr. Amonoo sheds light on the significant psychological challenges patients with GVHD face, noting that approximately 50% experience clinically significant depression, and about a third suffer from anxiety. This psychological distress permeates various aspects of daily life, affecting routines, relationships, and social roles.Dr. Amonoo uses a powerful analogy to describe psychological well-being, likening it to a toolbox filled with various tools and equipment essential for managing distress. Key components of this toolbox include psychotherapeutic interventions, health behaviors such as good nutrition and physical activity, medication when necessary, and professional help from specialty mental health clinicians. Social support and meaningful relationships also play a crucial role in enhancing wellbeing. Peer support, for instance, can offer valuable lived experiences and tips for thriving despite the challenges posed by GVHD.We also delve into the importance of the clinical team in managing cGVHD. The clinical team helps patients understand the disease, manage symptoms, and connect with resources. Dr. Amonoo emphasizes the importance of patients communicating openly with their clinical team, urging them not to hesitate in asking questions or expressing concerns about new symptoms.Pacing oneself is another critical aspect discussed. GVHD is not a static condition, and symptoms can evolve over time. Patients should give themselves grace, avoid overexertion, and maintain a sustainable pace to manage their energy levels effectively. Dr. Amonoo compares this to running a marathon, where pacing is essential to avoid burnout.Caregivers, who play a vital role in the patient's journey, must also prioritize their own well being. Dr. Amonoo stresses that caregiver well being directly impacts patient well being, encouraging caregivers to practice self-care and seek help when needed. Communication between caregivers and patients is crucial, especially as relationships and priorities may evolve during the recovery journey.As we conclude, Dr. Amonoo offers final advice to listeners: don't worry alone. Leverage your clinical team and support networks to navigate the challenges of recovery. This collaborative approach can significantly enhance the quality of life for both patients and caregivers.More:GVHD Upside Down Facebook Group: https://www.facebook.com/groups/gvhdupsidedownElephants and Tea: https://elephantsandtea.comNational 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.This season is made possible thanks to donations from Syndax and Incyte.https://syndax.com/https://incyte.com/ Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

Surviving & Thriving: JR Brandt's Journey with Chronic Graft Versus Host Disease

Play Episode Listen Later Aug 8, 2024 28:29

In this episode, we chat with JR Brandt of Montana, an acute lymphocytic leukemia (ALL) survivor, about his journey through diagnosis, treatment, and living with chronic graft-versus-host disease (cGVHD). JR shares his initial diagnosis story, describing how what he thought was a minor infection led to a leukemia diagnosis complicated by the Philadelphia Positive chromosome. He underwent 26 days of chemotherapy and was eventually cleared for a bone marrow stem cell transplant at Stanford University in March 2017.JR discusses the onset of chronic GVHD symptoms about a year after his transplant, beginning with skin changes. He was treated with Rituxan infusions, which provided temporary relief. Over the years, as symptoms re-emerged, JR continued Rituxan treatments and adjusted his care plan, even after moving from California to Montana. He highlights the importance of finding and continuing care with familiar healthcare professionals, like his physician who (fortunately) moved to Billings Clinic.Beyond skin issues, JR describes experiencing joint tightness, dry eyes, dysphagia, and dry mouth. He mentions practical solutions like using Biotene toothpaste for dry mouth and preservative-free Refresh Plus eyedrops for dry eyes. JR also shares the importance of physical and occupational therapy, which helped him develop a personalized exercise routine. Over time, he transitioned to aquatic aerobics and massage therapy, finding these methods more effective for managing his symptoms.JR emphasizes the significance of staying active, despite physical limitations, by adapting activities like biking with an e-bike and engaging in water aerobics. He also discusses the importance of sun protection and practical tips for managing GVHD symptoms, like using a sun hat and sunblock.JR addresses the mental health challenges of living with chronic illness, equating his experiences to PTSD and stressing the importance of setting goals and making plans to stay motivated. He shares how maintaining an active lifestyle and staying connected with his family helps him manage anxiety and stress.When discussing his career, JR explains how his background in healthcare was both a benefit and a challenge. He advises others with disabilities to utilize vocational rehabilitation services to explore new career paths. JR also encourages being your own patient advocate, ensuring all medical information is shared among healthcare providers to provide comprehensive care.JR concludes with the importance of using available resources, like the Americans with Disabilities Act, for mobility aids and other accommodations (link below). He highlights the need for continuous learning and resourcefulness in managing chronic GVHD and living life to the fullest. Products mentioned by JR in this episode:Refresh Eye Drops: https://www.refresheyedrops.com/Biotene for Dry Mouth: https://www.biotene.com/DaBrim Helmet/SunShade: https://dabrim.com/Oofos shoes: https://www.oofos.com/Mechanix Gloves: https://www.mechanix.com/Dycem Non-Slip tape: https://www.dycem-ns.com/Tryvaya (Prescription) Nasal Spray for Dry Eye: https://www.tyrvaya.com/Full list of Vocational Rehabilitation Agencies for all 50 states: https://rsa.ed.gov/about/statesAmericans With Disabilities Act (ADA) Requirements for Power-Driven Mobility Devices: https://www.ada.gov/resources/opdmds/This season is made possible thanks to donations from Syndax and Incyte.https://syndax.com/https://incyte.com/ Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

Atypical Graft Versus Host Disease Presentations Examined with Dr. Doris Ponce of MSKCC

Play Episode Listen Later Aug 8, 2024 27:31

Dr. Doris Ponce from Memorial Sloan Kettering Cancer Center delves into atypical presentations of chronic graft-versus-host disease (cGVHD). As an associate member, co-chair of the Center for Hematologic Malignancies, and director of the Graft-Versus-Host Disease Program, Dr. Ponce provides an in-depth understanding of this complex condition.Dr. Ponce emphasizes the diverse symptoms of GVHD that often overlap with other conditions, making diagnosis challenging. She outlines the eight organs typically affected by GVHD: skin, mouth, eyes, musculoskeletal, genitourinary, lungs, liver, and gastrointestinal tract. However, she highlights that GVHD can also present atypically in organs such as the kidneys, nervous system, muscles, heart, and pancreas, causing symptoms such as serositis, effusions, nephrotic syndrome, and autoimmune disorders like vitiligo.Atypical presentations of GVHD are rare and require exclusion of other conditions such as drug side effects or infections before diagnosis. Dr. Ponce stresses the importance of patients communicating any new or unusual symptoms with their clinicians, as these might not initially seem connected to GVHD.Focusing on skin-related GVHD, Dr. Ponce describes common and atypical manifestations, including tight skin (sclerodermatous changes), pigmentation loss, dryness, and psoriasis-like appearances. Treatment varies but often involves topical steroids or immune suppression tailored to individual symptoms. For daily skincare, she advises avoiding frequent hot showers, using lukewarm water, and selecting gentle, fragrance-free products to prevent skin irritation.Regarding sun exposure, Dr. Ponce recommends using broad-spectrum sunscreen with SPF 30 or higher, and wearing protective clothing to prevent rashes exacerbated by sunlight. She also discusses the use of chemical and mineral sunscreens, noting that mineral sunscreens, despite being thicker, are better suited for sensitive skin.Peggy and Dr. Ponce discuss the Long Good Feel Better program that the American Cancer Society provides. For patients wanting to wear makeup, Dr. Ponce suggests choosing products designed for sensitive skin, avoiding those with harsh ingredients or multiple components, and replacing makeup regularly to prevent contamination. She also warns against using organic or preservative-free makeup due to infection risks.Haircare after GVHD often involves managing hair loss and changes in texture. Dr. Ponce advises infrequent washing, using gentle products, and considering supplements like biotin. For wigs, she cautions against those requiring glue and suggests alternatives like clip-on wigs or scarves. Hair dyeing is permissible with ammonia-free products.Nail care post-transplant includes using nail hardeners and avoiding acrylic nails. Dr. Ponce also emphasizes checking for underlying issues like vitamin deficiencies that may affect nail health.In closing, Dr. Ponce highlights the holistic approach to patient care at Memorial Sloan Kettering Cancer Center, addressing both medical and psychological aspects to support patients' overall well-being. She encourages patients to communicate any concerns, as seemingly minor symptoms might significantly impact their health and recovery. Dr. Ponce's dedication to improving patients' lives extends beyond treating their conditions, fostering confidence and quality of life throughout their recovery journey.More:Memorial Sloan Kettering Cancer Center's Tips for Managing GVHD (created by Dr. Ponce and dermatologist) Dr. Alina Markova:https://www.mskcc.org/cancer-care/patient-education/tips-managing-graft-versus-host-disease-gvhdAmerican Cancer Society's Look Good Feel Better Program: https://lookgoodfeelbetter.org/Memorial Sloan Kettering Cancer Center Website: https://www.mskcc.org/Sally Hansen Nail Hardener: https://www.sallyhansen.com/en-us/nail-care/nail-care/mega-strength-hardenerSurvivor recommended clothing brands that have SPF/UPF clothing:Coolibar: https://www.coolibar.com/Columbia: https://www.columbia.com/c/sun-protection/Baleaf: https://www.baleaf.com/collections/upf50This season is made possible thanks to donations from Syndax and Incyte.https://syndax.com/https://incyte.com/ Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

Women's Sexual Health and Graft Versus Host Disease Discussed with Dr. Tosin Goje of Cleveland Clinic

Play Episode Listen Later Aug 8, 2024 30:03

This epsiode includes content related to reproductive organs and sexual health and may not be suitable for all listeners.In this episode, we speak with Dr. Oluwatosin "Tosin" Goje, an Associate Professor of OBGYN and reproductive biology at the Cleveland Clinic. We delve into the critical and often under-discussed topic of female sexual health issues related to chronic genital graft-versus-host disease (GVHD), a condition affecting many women post bone marrow transplant.Dr. Goje begins by highlighting the prevalence of sexual dysfunction among female survivors of malignancies, particularly those who have undergone bone marrow transplants. Astonishingly, 80% of female survivors report no significant improvement in their sexual function even five years post-transplant. This issue, often underdiagnosed and unspoken about, affects their quality of life despite their physical recovery.She explains that the persistent sexual dysfunction is multifactorial. Factors include the systemic effects of chronic GVHD, which can cause fatigue and changes in body appearance, making patients feel less attractive. Chronic genital GVHD specifically affects the vulva and vagina, causing changes like thickening, rawness, and atrophy, leading to pain with intimacy, burning, and even bleeding. Additionally, medications can alter libido, and the overall psychosocial burden of their diagnosis and treatment exacerbates these issues.Dr. Goje emphasizes the importance of a multidisciplinary approach to manage these problems. She details the symptoms of genital GVHD and the necessity of individualized treatment plans. Hormone replacement therapy is essential for those with premature ovarian insufficiency or menopause, which can be accelerated by the transplant. Vaginal estrogen or other moisturizers and lubricants are often required, along with immunosuppressants like topical clobetasol to manage inflammation.Communication emerges as a vital theme throughout our conversation. Dr. Goje stresses that healthcare providers need to proactively ask about sexual health issues. Patients, often so grateful for their survival, do not prioritize these concerns. Utilizing validated questionnaires can help initiate these crucial discussions and overcome hesitation to begin the conversation. For patients, Dr. Goji advises regular consultations with a gynecologist and open discussions about their medications and any sexual health issues they experience, even before diagnosis.Addressing the specific needs of younger women, Dr. Goje discusses options like egg freezing before treatment to preserve fertility. She also notes that many foundations and insurance plans provide financial support for these procedures.Dr. Goje highlights the various treatments available for managing sexual dysfunction, including the use of silicone dilators, surgical interventions, and laser therapy. She encourages couples to communicate openly about their sexual health and consider sex therapy or couples therapy to address issues together. For patients experiencing chronic vaginal pain or infections, she recommends appropriate medical treatments, including potential surgery or laser treatment. She emphasizes the need for accurate diagnosis and management.Finally, Dr. Goje shares poignant stories from her practice, illustrating her deep commitment to her patients' holistic health. She reminds us that the goal is not just survival but also ensuring a quality life post-treatment.In another episode this season, we discuss male sexual health as it relates to GVHD.More Information:Cleveland Clinic - https://my.clevelandclinic.orgReplens - https://www.replens.comLuvena -https://luvena.comRevaree Moisturizer: https://hellobonafide.com/products/revareeMonaLisa Touch Laser - https://www.smilemonalisa.comNational 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/ Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

Season 14 Trailer: The Parts of cGVHD We Don't Often Talk About

new york spotify apple montana elephants tea cleveland clinic memorial sloan kettering cancer center dana farber cancer institute gvhd incyte

Play Episode Listen Later Aug 2, 2024 3:19

Season 14 of the Marrow Masters podcast produced by the National Bone Marrow Transplant Link will be out soon, focusing on the parts of chronic graft versus host disease we don't often talk about. We'll cover male and female sexuality, and atypical presentations of chronic GVHD. We'll share a patient and caregiver perspective related to chronic GVHD and take a deep dive into the psychosocial and emotional struggles of those with this rare and sometimes debilitating disease.Guests include Dr. Doris Ponce and Dr. Jose Flores Ramirez of Memorial Sloan Kettering Cancer Center in New York, Dr. Hermioni "Hermi" Amonoo of Dana Farber Cancer Institute in Boston, and Dr. Oluwatosin Goje of Cleveland Clinic. We also speak with JR Brandt of Montana, an inspiring ALL Survivor, and Angie Giallourakis, caregiver and founder of Elephants and Tea.Season 14 of the Marrow Masters podcast will offer survivors insight, compassion, and answers to infrequently discussed subjects. The Marrow Masters podcast is produced by the National Bone Marrow Transplant Link and sponsored this season by Incyte and Syndax. Look for all six episodes coming soon on Apple, Spotify, YouTube, or wherever you're listening right now.And for more, visit the National Bone Marrow Transplant Link at nbmtlink.org or follow the link below. Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

A New Era in GVHD Prophylaxis: A Conversation With Dr. Samer Al-Homsi