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PRRT

PRRT (Peptide Receptor Radionuclide Therapy) Educational Videos

Episode 10: PRRT (Part III)
50:49

Episode 10: PRRT (Part III)

ABOUT THIS EPISODE How can patients make decisions about where, when, and what kind of PRRT to receive? How does PRRT in the USA differ from other parts of the world? Why does each institution have different post-PRRT radiation safety precautions? What is the patient experience with traveling after PRRT? Internationally recognized patient advocate and President of NorCal CarciNET Community, Josh Mailman, answers ten common questions about the past, present, and future of PRRT. Josh, whose journey has taken him from PRRT recipient to a seat on the Nuclear Regulatory Commission Advisory Committee, shares from his years of patient advocacy work in nuclear medicine and clarifies some misunderstandings about PRRT. MEET JOSH MAILMAN, MBA Josh Mailman was diagnosed with PNET in 2007. Josh is an internationally recognized advocate for NET patients as well as an advocate for integrative oncology and nuclear medicine and molecular imaging. He is the inaugural chair of the Society of Nuclear Medicine and Molecular Imaging’s (SNMMI) Patient Advocacy Advisory Board, a member of The Education and Research Foundation for Nuclear Medicine and Molecular Imaging (ERF) Board, acting COO the World Association of Radiopharmaceutical and Molecular Therapy (WARMTH), and president of NorCal CarciNET Community, one of the largest NET patient communities in the United States. In addition, he is a member of National Cancer Institute’s GI Steering Committee after being a member of the NCI Task Force on Neuroendocrine Tumors for seven years. Josh is also a member of the Board of Directors and Executive Committee of the Neuroendocrine Tumor Research Foundation(NETRF). He sits as the single patient member of NETRF's Scientific Advisory Committee which reviews research applications for private funding by this 501c3 foundation. In 2015, Josh was honored with the Warner Advocacy Award, given annually by Novartis Oncology Patient Advocacy and The NET Alliance. The award recognizes an individual for leadership and advocacy for neuroendocrine patients. In the same year, Josh was given the SNMMI’s President’s Award for his work on behalf of patients in the nuclear medicine field. Josh is a former executive board member of the Society for Integrative Oncology (SIO)and was named SIO Patient Advocate of Year in 2010. Josh is a frequent and sought-after speaker for his passionate and highly informed perspective on how patients can effectively participate in the process of working with key stakeholders to improve treatments and advance progress for better quality of life and eventual cures. TOP 10 PRRT QUESTIONS 1. PRRT was available for years outside the USA before it was available here. Why did it take so long before PRRT was available in the US? 2. How does PRRT differ in the USA versus in Europe and other parts of the world? 3. Why is PRRT so much more expensive in the US vs other places in the world? Is it covered by insurance / for lung NETS? 4. Now that Lutathera is more widely available, how does one go about deciding where to get treatment? (Does it matter if I get it locally vs a “NET center?”) / Does it matter where you go to receive your PRRT treatment? (Do I need to be going to a NET center to receive PRRT treatment?) 5. Some people are told they can only receive 4 doses of PRRT in their lifetime. What are your thoughts about this? Do we always need 4 treatments? / How might patients decide when to have repeat PRRT versus having another type of PRRT or another treatment? What might you need to consider as a patient and advocate? 6. What is the patient experience regarding traveling after PRRT? (Do I need to worry about setting off security alarms at airports? What about other security alarms such as at event venues or courthouses?) 7. How might patients go about deciding between various PRRT options (i.e. alpha versus beta)? What might you consider as a patient and as an advocate? 8. Some people are told that PRRT should be saved as a “last resort.” How would you respond? 9. What is your role as a member of the Nuclear Regulatory Commission’s Advisory Committee on the Medical Use of Isotope? 10. Talk a little bit about the release criteria and radiation safety precautions following Lutathera. Why is there a range of what patients are told? How does the process & procedure of radiation safety in the USA differ in the USA vs Europe and other parts of the world? For more resources and a transcript of this episode, visit https://www.lacnets.org/podcast10.
Episode 9: PRRT (Part II)
26:22

Episode 9: PRRT (Part II)

ABOUT THIS EPISODE Who is eligible for PRRT? What are the side effects? Should somatostatin analogues be continued? Can PRRT be repeated when there is disease progression? NET expert and Nuclear Medicine Physician Dr. Martin Auerbach of UCLA Health answers 10 common questions about the decision-making process of PRRT. Dr. Auerbach addresses how to manage side effects, carcinoid crisis, labs, and post-PRRT imaging. MEET DR. MARTIN AUERBACH Dr. Auerbach is the Director of Nuclear Medicine at the Westwood and Santa Monica UCLA Hospitals, and Associate Professor in Nuclear Medicine, Division of Pharmacology, at the David Geffen School of Medicine at UCLA. Apart from serving as attending physician in Nuclear Medicine at the UCLA Santa Monica and Westwood Hospital, active research includes clinical studies investigating the role of molecular imaging with PET/CT to gain insights into malignant disease processes, and monitoring of cancer treatment. TOP 10 PRRT QUESTIONS 1. Who is eligible for PRRT? When considering PRRT, is there a minimum or maximum tumor size? What is the effect if a patient receives half the planned dose or a delay in receiving a dose due to low counts? 2. How do you decide on doses of radioactive agents in PRRT? Do they consider the individual’s weight or does everyone get the same dose? 3. What are the side effects of PRRT and how are they managed? 4. Do you continue SSA with PRRT and if so when should one receive it? 5. Can people have carcinoid crisis with PRRT? If so, how is this treated? 6. When or how often are labs done? Which labs and what are you looking for? 7. When do you do imaging? Which imaging to you do? 8. When would you expect to see a response with PRRT and what is the statistics about the shrinkage or response that is expected? 9. For those who have received 4 doses of Luthatera, what happens if/when there is progression, can PRRT be repeated? Can people have more than 4 doses of Lutathera? 10. What is the difference between alpha and beta PRRT? How would you decide between the alpha or beta PRRT? For more resources and a transcript of this episode, visit https://www.lacnets.org/podcast9.
Episode 8: PRRT (Part 1)
49:18

Episode 8: PRRT (Part 1)

ABOUT THIS EPISODE Curious about PRRT? Wondering what a PRRT day looks like, what side effects you might experience, and what precautions you should take? NET expert and Administrative Nurse Lindy Gardner of UCLA Health answers 10 common questions about the before, during and after of PRRT. Lindy explains how to prepare for your treatment day, what to expect on the day of the treatment, and radiation precautions following PRRT including travel, vaccinations, and fertility and breastfeeding recommendations. MEET LINDY GARDNER, MSN ​Lindy Gardner, MSN is the lead nurse for the UCLA Peptide Receptor Radionuclide Therapy (PRRT) program. She is one of the authors of the NANETS/SNMMI Procedure Standard for Somatostatin Receptor–Based Peptide Receptor Radionuclide Therapy with 177Lu-DOTATATE. Lindy earned a Bachelors of Science in Nursing from Dundee University Scotland. TOP 10 PRRT QUESTIONS 1. What can I expect on the day of PRRT infusion? What is the day like and what side effects might I experience? 2. What do I need to do to prepare for PRRT? Can I eat and drink normally the day of the treatment? 3. What are the side effects after PRRT and how are they managed? 4. How concerned should I be about the radiation I’m receiving and the long-term effects? 5. What precautions should be taken, especially with small children or pets or others in the house that might be immunocompromised? 6. Does PRRT affect fertility and are there issues with pregnancy or breastfeeding after getting PRRT? 7. How should I travel home? Do I need to sit in the back seat of the car? 8. How soon can one travel after PRRT? In particular, when can one get on a plane? 9. Do I need to sleep in a separate bed and if so, how long? 10. Am I immunocompromised after my PRRT treatment? Do I need to avoid getting vaccines and am I more susceptible to bacteria and viruses? For more resources and a transcript of this episode, visit https://www.lacnets.org/podcast8.

PRRT Patient and Caregiver Stories

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