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    • Life With Multiple Myeloma
    • Past Myeloma Crowd Round Tables
    • Jan 28, 2019

    Myeloma Crowd Round Table Expert Videos: Scottsdale — October 14, 2018

On October 14, 2018, a Myeloma Crowd Round Table meeting was held in Scottsdale, AZ at the Mayo Clinic featuring three myeloma experts, including:

  • Rafael Fonseca, MD, Mayo Clinic Scottsdale
  • Gareth Morgan, MD, FRCP, FRCPath, PhD, University of Arkansas Myeloma Institute
  • Leif Bergsagel, MD, PhD, Mayo Clinic Scottsdale

Multiple Myeloma: A Historical Perspective

Dr. Leif Bergsagel of the Mayo Clinic Scottsdale talks about the accelerating effectiveness of myeloma therapies. Beginning with his father’s work in myeloma in the 1960s and the discovery of Melphalan to the changing trajectory of survival. We have better drugs and a better understanding of the disease and the future looks bright.

 

Multiple Myeloma Genetics and MRD

Dr. Rafael Fonseca, of the Mayo Clinic Scottsdale talks about how small changes in DNA lead to multiple myeloma and how it continues to change. New tests including MRD testing are being used to better predict disease progression in the fight against myeloma.

 

Upfront Treatment for Multiple Myeloma

Dr. Gareth Morgan of the University of Arkansas Myeloma Institute talks about how drastically treatment has transformed in multiple myeloma over the years, and how a paradigm shift in up-front treatment after diagnosis can be the key to a cure.

 

Myeloma Expert Panel and Q&A – Morning

Myeloma experts Drs. Fonseca, Morgan and Bergsagel answer patient questions from the audience during the live Q&A discussion panel. Topics covered include:

  • 0:13 How will CRISPR Technology affect the treatment of multiple myeloma?
  • 1:17 Does Melphalan or any other protocol increase risk of early-onset Alzheimer’s?
  • 2:49 After 10 years of living with myeloma am I through the worst of it?
  • 4:36 When do you recommend MRD testing? Is it only for when you have almost no disease? And at what intervals should you get tested?
  • 6:55 My wife’s parents had multiple myeloma, and now she does too. Is there a genetic component and should family members be screened?
  • 9:58 My husband has severe neuropathy from Velcade that is immobilizing. Is this common?
  • 12:09 Have the guidelines for transplant been recently re-evaluated? Are they too conservative?
  • 15:11 What makes a patient high-risk? Also, what is SPORE?
  • 22:29 About High-risk – if you get a bone marrow biopsy how does the % of high-risk cells (E>G> 10% vs 80% affect your risk?
  • 24:01 If I have a chromosome 17p deletion what effect does that have going forward?
  • 26:43 What can we look forward to at ASH in December 2018?
  • 29:45 Can you talk about patients with extramedullary disease and if any new drugs are working for these patients?
  • 30:52 What is the best advice you can give regarding chemo brain? Also if myeloma cells change over time should we try different treatments?
  • 33:28 How do you test for the immune system status? And how do you combine that with the myeloma genetics to get a 360 degree picture of a patient and their potential response? And if the immune system is exhausted, what can a patient do to boost it back up again?

 

Standards of Myeloma Care Tomorrow

Dr. Leif Bergsagel of the Mayo Clinic Scottsdale speaks on the future of maintenance therapy, new approved drugs (Darzalex and Empliciti) and CAR-T cells and how these drugs will change treatment as they become the multiple myeloma standards of care of tomorrow.

 

Personalized Medicine for Multiple Myeloma

Dr. Gareth Morgan of the University of Arkansas Myeloma Institute speaks on the concept of personalized medicine being the only way to go forward with myeloma treatments. Myeloma has different responses to treatment, different prognoses, and different distributions. So why do we use the same treatment for everyone, if we know it’s not a single disease?

 

Smoldering Myeloma, MGUS and Strategies for Myeloma Treatment

Dr. Rafael Fonseca, of the Mayo Clinic Scottsdale speaks on the differences between MGUS, smoldering myeloma, and active myeloma. This state determines the patient’s line of treatment and how the myeloma is progressing.

 

Myeloma Expert Panel and Q&A – Afternoon

Myeloma experts Drs. Fonseca, Morgan and Bergsagel answer patient questions from the audience during the live Q&A discussion panel. Topics covered include:

  • 14:25 I’ve had MGUS for 17 years. Will the length of time MGUS takes to progress affect the type of myeloma I get?
  • 1:03 Do all cancers change like myeloma does?
  • 1:37 On CAR-T cell therapy: What is the longevity of the T-cells after they have been infused?
  • 2:10 What’s the difference between progression-free survival and overall survival?
  • 2:54 How can patients plan for a new era of CAR-T cell therapies for myeloma?
  • 4:31 If CAR-T is going to be approved in a few years for relapsed/refractory patients, are there treatments I should plan on or avoid in the meantime?
  • 5:40 How is MGUS diagnosed if there are no symptoms?
  • 6:34 What is the root cause of myeloma based on our knowledge today?
  • 10:47 Do chemotherapy drugs or transplants alter your genetics?
  • 11:17 Do things like deletion 17p or p53 get altered?
  • 11:52 So then how often would you recommend getting a bone marrow biopsy to track changes?
  • 12:45 Daratumumab has only been out for two years but you talk about patients failing on daratumumab. Are patients not seeing a long response?
  • 13:11 If you lived at camp Lejeune, and got myeloma is there a certain subset of myeloma that you’re seeing from those patients?
  • 13:58 You mentioned exposure to Benzyne is related to having an 11:14 translocation – could that be a potential cause of myeloma?
  • 14:52 Are autologous transplants and CAR-T therapy similar treatments?
  • 18:06 Can you show us what a CAR-T cell looks like?
  • 18:53 Does the T cell die after killing the myeloma cell?
  • 19:09 Do you know whether ex-military personnel are more likely to get myeloma than the general population?
  • 27:52 My myeloma causes bone pain and my doctor says his patients have tried CBD oil. Thoughts?
  • 28:48 Can you comment on the role of diet and point to any conclusive studies on the role of diet in treatment?
  • 29:25 Do you know anything about and can you comment on the SKY92 trial?
  • 30:45 Can you talk about the relationship between the microbiome and cancer?
  • 31:11 If you do another stem cell transplant after relapse would you use cells you had previously banked or harvest again?
  • 31:33 What’s the difference between tandem and salvage transplants?
  • 32:04 Can you explain more about the AMG 420 trial?
  • 33:03 Is there any relationship between autoimmune disease and myeloma?
  • 33:46 How long are stored stem cells good for?
  • 34:39 What happens to unused stem cells? Are they used for research?
  • 35:42 Is there a way to find out if my collected stem cells are available for research?
  • 36:02 Is there a link between cancer and sugar?
  • 37:55 Have you researched anything about the impact of hormone manipulation on myeloma?

 

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