On November 10, 2018, a Myeloma Crowd Round Table meeting was held in Buffalo, NY featuring four myeloma experts, including:
Morie Gertz, Mayo Clinic
Jens Hillengass, Roswell Comprehensive Cancer Center
Philip McCarthy, Roswell Comprehensive Cancer Center
Donna Reece, Princess Margaret Hospital/University of Toronto
Myeloma Round Table Introduction
Dr. Hillengass introduces the speakers for the Round Table and welcomes the patients present.
The Basics of Multiple Myeloma
Dr. Morie Gertz of the Mayo Clinic teaches about the basics of myeloma. He relates your bone marrow to a garden and describes how myeloma affects the body, what important blood numbers you need to know as a patient, what to bring to a second opinion consultation, and why transplant isn’t a cure.
Myeloma Genetics: Not Just for Scientists
Dr. Donna Reece of Princess Margaret Hospital and University of Toronto explains myeloma genetics, how myeloma staging has evolved over time, types of genetic testing, high-risk genetic features and how high-risk disease can be treated.
Myeloma Transplant and Maintenance
Dr. Philip McCarthy of Roswell Comprehensive Cancer Center explains the essentials of understanding transplant and maintenance therapy, gives an overview of the history of myeloma therapies, and dives into recent studies showing the benefit of transplant and new maintenance therapies to individuals with myeloma.
Myeloma Expert Panel and Q&A – Morning Session
Myeloma experts Drs. Hillengass, Reece, McCarthy and Gertz answer patient questions from the audience during the live Q&A discussion panel. Topics covered include:
0:15 Is the experience of a second transplant similar to the first one or is it tougher the second time?
1:20 Is there evidence that physically fit people have a better prognosis?
7:07 After 3 years of treatment I have no idea what my myeloma genetics are. Where do I find that information?
8:34 Is myeloma hereditary and is there a way to know ahead of time if someone in a family may get myeloma?
10:33 Do we sometimes do a 3rdtransplant on second or subsequent relapse?
14:19 Do other countries administer new drugs before patients in the United States receive them?
15:38 Should all patients receive transplants and is there an age limit for transplant?
21:09 What progress is being made in treatments that minimize ugly side effects?
24:25 If MRD negativity is important for a good prognosis, how does coming out of MRD negativity change your treatment?
27:30 How does Mayo use MRD testing in the clinic?
30:13 Are there any foods that help with myeloma and if so, what foods specifically?
32:49 Can you explain the interaction between green tea and bortezomib?
33:28 If I relapse 2 years after a stem cell transplant, why not recollect stem cells instead of using the first collection?
34:11 If treatment began based on protein levels without considering side effects, can that affect subsequent decisions?
Imaging in Myeloma
Dr. Jens Hillengass of Roswell Comprehensive Cancer Center walks patients through the different types of imaging used in myeloma, compares and contrasts the advantages and disadvantages of each kind, and talks about future advances in myeloma imaging.
Myeloma Maintenance and Future Therapies
Dr. Philip McCarthy of Roswell Comprehensive Cancer Center talks maintenance and consolidation treatment, treating relapsed disease and upcoming new therapies for multiple myeloma.
Frequently Asked Questions in Myeloma
Dr. Morie Gertz of the Mayo Clinic Talks about when to treat myeloma, the limitations of staging, median survival, transplant vs. chemotherapy, the importance of participating in clinical trials and how close are we to targeted therapy in myeloma.
Myeloma Expert Panel and Q&A – Afternoon Session
Myeloma experts Drs. Hillengass, McCarthy and Gertz answer patient questions from the audience during the live Q&A discussion panel. Topics covered include:
0:15 I wasn’t able to do a stem cell transplant at diagnosis. Could I still get one?
1:52 Do bones heal after treatment and how long after transplant do they heal?
4:05 Dr Gertz how do you avoid side effects like neuropathy if they can from both transplant and chemotherapies?
7:54 What’s the drug you said everyone in the room should get again?
9:30 I’m 2 years in remission on lenalidomide maintenance. Is there a benefit to suspending maintenance?
13:36 If RVD is the standard first treatment, what’s the standard for first relapse?
16:43 I was sick but then got healthy enough to do a transplant.
19:01 If 75% of patients have some bone healing, over what time period does that healing occur?
19:43 Do people die from the toxicity of stem cell transplant?
21:14 I’m being vaccinated for the second time. My husband is worried that if he gets the shingles vaccine, I could catch it.
22:20 I was told that I still can’t get the Shingrix vaccine.
23:20 Are there myeloma specialists in Rochester?
23:34 Is it ok for a myeloma patient to be around someone who just received vaccine shots?
23:43 My husband is post-transplant and has been revaccinated twice. Why would the doctors want him to try again?
24:37 When should you be concerned about your lab results after being revaccinated?
25:11 There’s so much new stuff in myeloma. What has the most promise for the long-term benefit of the disease in your opinion?
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about the author Erika Johnson
Myeloma Crowd Editorial Contributor, Nursing student, and cancer advocate.