Workshop Video & Replay Slides
As a follow up to today's workshop, we will have the speaker slides and a video replay available. They will be provided to you shortly after the workshop concludes.
International Myeloma Foundation
in collaboration with Memorial Sloan Kettering Cancer Center
Welcome and Speaker Introductions
Joseph Mikhael MD, MEd, FRCPC, FACP Chief Medical Officer, IMF
Today’s Presenters
Joseph Mikhael, MD, MEd, FRCPC, FACP
Chief Medical Officer
Yelak Biru, MSc Patient, President, and CEO
International Myeloma Foundation
International Myeloma Foundation
Amy E. Pierre, RN, MSN, ANP-BC Memorial Sloan Kettering Cancer Center & Flatiron Health
Saad Z. Usmani, MD MBA FACP Chief of Myeloma Service Memorial Sloan Kettering Cancer Center
Terrence and Toni Green Patient & Care Partner Team
Robin Tuohy Vice President Support Groups International Myeloma Foundation
Michael Tuohy 22 year Myeloma Survivor
NEW YORK
Race Matters in Myeloma Care & Survival
Dr. Joseph Mikhael, International Myeloma Foundation
A Conversation with IMF President and CEO
Yelak Biru, International Myeloma Foundation
Myeloma for Patients Who Are Just Getting Started
Dr. Joseph Mikhael, International Myeloma Foundation
Saturday October 1, 2022 ~ Agenda Break 15 minutes
Connecting with the New York Tri-State Region via Support Groups
Robin Tuohy, International Myeloma Foundation and husband, Michael Tuohy
When Myeloma Comes Back
Dr. Saad Usmani
Memorial Sloan Kettering Cancer Center
Questions - Panel
Changing the Course of Myeloma in New York
Dr. Joseph Mikhael, International Myeloma Foundation
Communicating with your Healthcare Team: A 2-Way Street
Amy E. Pierre, Memorial Sloan Kettering Cancer Center & Flatiron Health
A Conversation with Patient & Care Partner Team, Terrence and Toni Green
Audience Questions - Panel Closing and Survey
Dr. Joseph Mikhael, International Myeloma Foundation
Audience
M-POWER
COMMUNITY WORKSHOP
International Myeloma Foundation
in collaboration with Memorial Sloan Kettering Cancer Center
Race Matters in Myeloma Care and Survival
Joseph Mikhael, MD, MEd, FRCPC, FACP Chief Medical Officer, IMF
1. Myeloma is the most common blood cancer in African Americans
And the incidence is growing…. By 2034 it is estimated that African Americans will make up roughly 24% of the newly diagnosed MM population1
African Americans have >2x the incidence rate of MM compared to white Americans
2. Myeloma is TWICE as common in African Americans
1 1. American Cancer Society. Cancer Facts and Figures for African Americans 2019-2021.
Hispanic African American Asian White The median age at diagnosis for all patients is 69 years 6665 7169 YEARS YEARS YEARS YEARS 3. African Americans are younger at diagnosis by about 5 years
4. African Americans comprise about 20% of all patients with MM
Currently, African Americans comprise 14% of the total population of the USA
5. African Americans have only HALF the survival of White Americans
We have made huge progress in survival in MM but this has not been realized to the same extent in African Americans
The
patient sees
primary care doctor THREE times with
and signs consistent with MM.
delay is even longer in African Americans, for many reasons:
diagnoses (like
6. There is a LONGER time from symptom onset to diagnosis in African Americans
average myeloma
their
symptoms
The
Confounding
diabetes) Access to diagnostics and care Awareness in primary care providers Timely referral to specialists…
7. African Americans are less likely to receive the critical treatments for MM – The 3 Ts: Triplets, Transplants, and CAR T cell therapy 1. NecampJ, et al. Blood. 2016;128:4502. 2. Chehab S, et al. Cancer. 2018;124(8):4358-43651
8. African Americans are much less likely to participate in Clinical Trials
4th T)
(the
9. There are biologic differences in African Americans with MM that may lead to lower risk disease African ancestry associated with less aggressive disease Higher prevalence of [a]: t(11;14) t(14;16) t(14;20) Lower prevalence[c]: 13q deletion 17p deletion • Absence of 17p deletion associated with better survival among younger African Americans vs White counterparts[d] a. Baughn LB, et al. Blood Cancer J. 2018;8:96; b. Badar T, et al. Cancer. 2020;127:82-92; c. Kazandjian D, et al. Blood Cancer J. 2019;9:15; d. Munjuluri A, et al. Blood. 2019;134:4388.
10. When African Americans receive equal access to care, their survival outcomes are equal, and at times, better than Whites Fillmore NR, et al. Blood. 2019;133:2615-2618
So what can we do about this? • It is a complex problem and requires a complex solution • Key themes of Success: • Awareness, Education, Advocacy and Empowerment in the lay community • Education, Cultural Competence, Access in the medical community • Policy, Expectations, Commitment in the regulatory and corporate community • This is impossible without genuine collaboration between ALL stakeholders • We believe the IMF is uniquely poised to address this issue and bring many of these key stakeholders together…
The
vision
and
core
of this initiative is to improve the short-
long-term outcomes of African American patients with myeloma. We want to empower patients and communities to CHANGE the current course of myeloma… Increase Awareness Engage the community Shorten the time to diagnosis Educate providers about culturally sensitive care Make a difference! 21 M-Power = Myeloma Power
A Conversation with Patient, IMF President, and CEO Yelak Biru
Joseph Mikhael MD, MEd, FRCPC, FACP Chief Medical Officer, IMF
Myeloma for Patients Who Are Just Getting Started
Joseph Mikhael, MD, MEd, FRCPC, FACP
Chief Medical Officer, International Myeloma Foundation
Professor, Translational Genomics Research Institute (TGen)
of Hope Cancer Center
City
THE BASICS OF BLOOD
• The blood is an “organ” made up of both cells and liquid “plasma” 1. Red Cells – carry Oxygen…trucks 2. White Cells – immune system…army 3. Platelets – help with clotting…ambulance All produced in the blood factory = Bone Marrow
WHAT IS CANCER?
• Simple definition:
• Identical, uncontrolled growth
• The body usually has a balance to allow cells to grow in the right place for the right period of time
• When that system is unbalanced, cancers grow
• Ie, solid tissue (breast, colon…) or blood cells
• The “double whammy” of blood cancers is that they are the cells meant to protect you
Multiple Myeloma* is a blood cancer of the plasma cells of that live in the bone marrow – Plasma Cells normally make antibodies to help us fight infections – Myeloma cells are abnormal plasma cells that make an abnormal antibody called “M protein” – The M stands for “monoclonal” = “identical” * Myeloma is NOT a bone cancer or skin cancer (melanoma), it is a type of blood cancer. WHAT IS MULTIPLE MYELOMA?
MULTIPLE MYELOMA SNAPSHOT
National MM Statistics
Cases
2021
in 2021
Trends in MM Natural History by Race
The Average Survival of patients with myeloma is
MM Incidence
Higher incidence in AA vs White patients:
• 15.9 vs 7.5 cases per 100,000 per year MM Mortality
Higher mortality in AA vs White patients: • 5.6 vs 2.4 MM deaths per 100,000
The expected survival is nearly
patients,
disease
IMPROVING!
10 years for all
but still less than 5 years in patients with high risk
34,920 Estimated New
in
12,410 Estimated Deaths
Image courtesy of American Society of Hematology Kyle et al. Mayo Clin Proc. 2003;78:21-33; MYELOMA IS A CANCER OF PLASMA CELLS • Cancer of plasma cells • Healthy plasma cells produce antibodies or “immunoglobulins” G, A, M, D, and E • Myeloma cells produce abnormal or monoclonal protein Bone marrow of patient with multiple myeloma 1.8% of all cancers; 17% of hematologic malignancies in the United States Most frequently diagnosed in ages 65 to 74 years (median, 70 years) The average age of diagnosis of 4-5 years younger in African American and Hispanic patients FAST STATS
MULTIPLE
DIAGNOSIS CAN BE CHALLENGING
Kyle RA. Mayo Clin Proc. 2003;78:21-33.
MYELOMA
Fatigue BoneAnemia Pain
R A B alcium elevation enal complications nemia one disease 2014 IMWG ACTIVE MYELOMA CRITERIA: MYELOMA-DEFINING EVENTS C Clonal bone marrow ≥10% or bony/extramedullary plasmacytoma AND any one or more Myeloma-Defining Events Clonal bone marrow ≥60%BM FLC MRI sFLC ratio >100 >1 focal lesion by MRI BM, bone marrow; FLC, free light chain; MRI, magnetic resonance imaging; sFLC, serum free light chain. Rajkumar et al. Lancet Oncol. 2014;15:e538-e548. Kyle et al. Leukemia 2010;24:1121-1127.
MORE ABOUT THE COMMON
SYMPTOMS
Low Blood Counts
• May lead to anemia and infection
• Anemia is present in 60% at diagnosis
Decreased Kidney Function
• Occurs in over half of myeloma patients
Bone Damage
• Affects 85% of patients
• Leads to fractures
Bone Turnover
• Leads to high levels of calcium in blood (hypercalcemia)
Weakness Fatigue Infection
About 10% to 20% of patients with newly diagnosed myeloma will not have any symptoms.
“CRAB”
Weakness Bone pain Loss of Appetite & Weight loss
2003;121:749-57.
Premalignant
M-V, et
Malig Rep. 2010;5(2):62-69.
2009;114:Abstract 614.
SE. Cancer. 1975;36:842-854.
Malignant
2006;20(9):1467-1473.
2014; 15:e538e548.
Condition MGUS1-4 (Monoclonal Gammopathy of Undetermined Significance) SMM1-5,8 (Smoldering Multiple Myeloma) Active Multiple Myeloma6-8 Clonal plasma cells in bone marrow <10% 10%-60% >10% Presence of Myeloma Defining Events None None Yes Likelihood of progression ~1% per year ~10% per year Not Applicable Treatment No; observation Yes for high risk*; No for others Yes 1. Kyle RA, et al. N Engl J Med. 2007;356:2582-90. 2. International Myeloma Working Group. Br J Haematol.
3. Jagannath S, et al. Clin Lymphoma Myeloma Leuk. 2010;10(1):28-43. 7. Durie BG, et al. Leukemia.
8. Rajkumar SV, et al. Lancet Oncology
MULTIPLE MYELOMA TYPICALLY PRECEDED BY PREMALIGNANT CONDITIONS
4. Kyle RA, et al. Curr Hematol
5. Mateos
al. Blood.
6. Durie BG, Salmon
HOW TO CHOOSE A TREATMENT PLAN
Lifestyle Goals of Therapy
Age Patient Preference Myeloma Symptoms
SECOND/EXPERT OPINION • You have the right to get a second opinion. Insurance providers may require second opinions. • A second opinion can help you: – Confirm your diagnosis – Give you more information about options – Talk to other experts – Introduce you to clinical trials – Help you learn which health care team you’d like to work with, and which facility
TOOLS OF THE TRADE FOR FRONTLINE THERAPY STANDARD DRUG OVERVIEW Class Drug Name Abbreviation Administration IMiD immunomodulatory drug Revlimid (lenalidomide) R or Rev Oral Thalomid (thalidomide) T or Thal Proteasome inhibitor Velcade (bortezomib) V or Vel or B Intravenous (IV) or subcutaneous injection (under the skin)Kyprolis (carfilzomib) C or K or Car Ninlaro (ixazomib) N or I Oral Chemotherapy Cytoxan (cyclophosphamide) C Oral or intravenousAlkeran or Evomela (melphalan) M or Mel Steroids Decadron (dexamethasone) Dex or D or d Oral or intravenous Prednisone P Monoclonal Antibodies Daratumumab (Darzalex) Istuximab (Sarclisa) Dara Isa Intravenous (IV) or subcutaneous (SQ)
GENERAL PRINCIPLES OF INITIAL THERAPY
1. Most patients will be given a combination of drugs to control the disease quickly
2. We don’t “save the best for last” because early therapies have a long term effect on
survival
3. We seek a DEEP and DURABLE response
4. We mix and match from the 3 major classes of drugs and add steroids: Proteasome Inhibitors – most often botezomib (Velcade)
Immunomodulatory Drugs – lenalidomide (Revlimid)
Monoclonal Antibodies – daratumumab (Darzalex)
5. We decide early on whether or not someone will have a stem cell transplant
PERSONALIZED APPROACH TO FRONTLINE THERAPY
Newly Diagnosed MM and Risk Stratified
Factors to be considered for ASCT
Age, performance status (PS), comorbidities (R-MCI score, HCT-Cl) and organ function
ASCT Eligible ASCT Ineligible
Algorithm in
Treatment
Frontline RAJKUMAR SV. 2020 Not Transplant Candidate Transplant Candidate VRd x 8-12 cycles followed by Len VRd x 4 cycles Early Auto SCT followed by Maintenance Newly Diagnosed MM Collect & store Continue VRd x4 Maintenance Delayed Transplant DRd *Based on CALGB 100104, S0777, IFM-2009, MAIA ¶ VTd/VCd if VRd not available
Key Questions:
TRANSPLANT ELIGIBLE
1. Is Transplant still necessary?
2. What is the triplet combination? (VRD or KRD)
3. Should we switch to quadruplet combinations? (D-VRD, D-KRD or I-VRD, I-KRD)
Key Questions:
TRANSPLANT ELIGIBLE
1. Is Transplant still necessary?
YES, it seems that it still helps with DEPTH and DURATION of response
2. What is the triplet combination? (VRD or KRD)
Both are legitimate, we tend to use VRD more but KRD in certain patients
3. Should we switch to quadruplet combinations? (D-VRD, D-KRD or I-VRD, I-KRD)
We are indeed switching to triplets!
TRANSPLANT INELIGIBLE
Key Questions:
1. Are triplets better than Doublets? (VRD vs RD and DRD vs RD)
2. How long should patients be treated?
3. How can we make these combinations more tolerable?
TRANSPLANT INELIGIBLE
Key Questions:
1. Are triplets better than Doublets? (VRD vs RD and DRD vs RD)
YES, this has been a consistent trend, and DRD or VRD are the standard of care in most
2. How long should patients be treated? In general, the longer the better – but hopefully we will develop stopping rules in the future
3. How can we make these combinations more tolerable?
Using drugs that impair quality life LESS is critical… especially stopping dexamethasone!
THE EVOLUTION OF MYELOMA THERAPY Induction Consolidation Front line treatment Post consolidation Maintenance Rescue Relapsed New D-VRD Isa-VRD D-KRD Isa-VRD “more” induction? Daratumumab? Carfilzomib? Lenalidomide + PI CAR T Cell Therapy Bispecific/Trispecific Antibodies Cell Modifying Agents Venetoclax? PD/PDL-1 Inhibition? Multiple small molecules ++++++++ Now VD Rev/Dex CyBorD VTD VRD KRD D-VMP DRD SCT Tandem ASCT (?) Nothing Thalidomide? Bortezomib Ixazomib Lenalidomide Combinations Bortezomib Lenalidomide Carfilzomib Pomalidomide Selinexor Belantamab mafodotin Melphalan flufenamide Panobinostat Daratumumab Ixazomib Elotuzumab Isatuximab Idecabtagene autoleucel Ciltacabtagene autoleucel ASCT, autologous stem cell transplant; CAR, chimeric antigen receptor; Cy, cyclophosphamide; d- daratumumab; D/dex, dexamethasone; isa, isatuximab; K, carfilzomib; M, melphalan; PD-L1, programmed death ligand-1; PI, proteasome inhibitor; Rev, lenalidomide; V, bortezomib. Speaker’s own opinions.
Connecting with the New York Tri-State Region via Support Groups
A conversation with Robin Tuohy, Vice President Support Groups & Michael Tuohy, Myeloma
Survivor
www.support.myeloma.org
When Myeloma Comes Back
Saad Z. Usmani, MD MBA FACP Chief of Myeloma Service
Disclosures
• Research funding: Amgen, Array Biopharma, BMS, Celgene, GSK, Janssen, Merck, Pharmacyclics, Sanofi, Seattle Genetics, SkylineDX, Takeda.
• Consulting: Abbvie, Amgen, BMS, Celgene, EdoPharma, Genentech, Gilead, GSK, Janssen, Oncopeptides, Sanofi, Seattle Genetics, SecuraBio, SkylineDX, Takeda, TeneoBio.
• Speaker: Amgen, BMS, Janssen, Sanofi.
Presented by: Saad Z. Usmani, MD MBA FACP, @szusmaniMultiple
by: Saad Z. Usmani, MD MBA FACP,
Myeloma: A Systemic Plasma Cell Malignancy • Estimated new cases and deaths in 2021 in the United States1 – New cases: 34,920 – Deaths: 12, 410 • Percentage of patients surviving 5 years: 55.6%2 • Median age at diagnosis: 69 years2 • MM is most common in men and Black adults2 1 Plasma cell neoplasms (including multiple myeloma) treatment (PDQ®)-Health Professional Version. National Cancer Institute website. http://www.cancer.gov/cancertopics/pdq/treatment/myeloma/healthprofessional#Section_4. Updated February 11, 2021. Accessed May 6, 2021. 2. SEER Cancer Stat Facts: Myeloma. National Cancer Institute website. http://seer.cancer.gov/statfacts/html/mulmy.html. Accessed May 6, 2021. 3. Myeloma at a glance. American Cancer Society Cancer Statistics Center. American Cancer Society website. https://cancerstatisticscenter.cancer.org/?_ga=2.47184933.325832967.1600196335-611855784.1581698489#!/cancer-site/Myeloma. Accessed May 6, 2021. © 2020 American Cancer Society 4.6-5.5 5.6-6.3 6.4-7.2 7.3-8 8.1-8.9 State-Level Incidence of MM per 100,000 Between 2012 and 20163 Presented
@szusmani
Realities of Health Care Access
by: Saad Z. Usmani, MD MBA FACP, @szusmani• Blacks have a twofold higher incidence of mortality from multiple myeloma compared with whites.
• Black and Hispanic patients with multiple myeloma are less likely to utilize stem cell transplantation and bortezomib treatment compared with whites; they also receive novel treatments later after their diagnosis compared with whites.
• Notably, a new study shows that Blacks may have a higher survival rate than whites when all patients have equal access to novel treatments.
AACR Cancer Disparities Progress Report 2020
Presented
MM Is Not One Disease
• MGUS to Active MM transition period is different among patients. Diagnosis is made at variable time-points during the transition, so degree of end organ damage is different.
• Management strategies have improved MM survival from 2-3 years in the 2000s to > 10 years in the 2020s.
• Advances in understanding myeloma biology has led to new therapeutic targets.
MM Pathways
BM microenvironment
Immune regulation and modulation
• Picking the right strategy that gives the highest likelihood of the best depth of response in the first year of diagnosis is extremely important for survival outcomes.
Martinez-Lopez J et al Blood 2011 Usmani et al Leukemia 2012
Presented by: Saad Z. Usmani, MD MBA FACP, @szusmani
–
–
–
Treatment Paradigm For Newly Diagnosed Multiple Myeloma
Presented by: Saad Z. Usmani, MD MBA FACP, @szusmani
Management Plan – Ongoing Process During Care
Revising treatment plan
Data gathering
Monitoring response to treatment plan
Team discussion
Implementation of treatment plan
Development of treatment plan
Presented by: Saad Z. Usmani, MD MBA FACP, @szusmanihave
now and more
are coming!
Cyclophosphamide Melphalan Etoposide Doxorubicin Bendamustine
Thalidomide Lenalidomide Pomalidomide Iberdomide* Mezigdomide*
Bortezomib Carfilzomib Ixazomib
Elotuzumab Daratumumab Isatuximab
Predisone Dexamethasone Methylprednisolone
We
options
options
Conventional Chemotherapy Immunomodulatory Drugs Proteasome Inhibitors Monoclonal Antibodies Steroids
Antibody Drug Conjugates CART Cell Therapy Bispecific antibodies Exportin-1 Inhibitors Bcl2 Inhibitors Belantamab mafodotin Ide-cel Cilta-cel MCARH017* Dual CART* Teclistamab* Elranatamab* Alnuctamab* AABV-383* RGN* Selinexor Eltanexor* Venetoclax* BGB-11417* *In clinical trials
The Landscape of MM in First Relapse
Dara-Rd
Dara-Rd
Dara-RVd Dara-KRd
INDUCTION
CyBord
CyBord
RVd KRd Presented by: Saad Z. Usmani, MD MBA FACP, @szusmaniRVd KRd ASCT ASCT
Dara-Rd= daratumumab + lenalidomide + dexamethasone; RVd (or VRd)=bortezomib + lenalidomide + dexamethasone; Dara-RVd= daratumumab + lenalidomide + bortezomib + dexamethasone; KRd= carfilzomib + lenalidomide + dexamethasone ; Dara-KRd= daratumumab + carfilzomib+ lenalidomide + dexamethasone ;CyBorD= cyclophosphamide + bortezomib + dexamethasone; Rd (or Rd)=lenalidomide + dexamethasone; Vd = bortezomib + dexamethasone; V= bortezomib; K=carfilzomib; R = lenalidomide; D or d = dexamethasone
or
CyBord
Dara-RVd Dara-KRd
or
KRd
RVd
KRd
RVd CyBord Rd Vd Rd Vd 1st Relapse1st Relapse
R+/-d RV +/-d KR +/- d V or K alone R+/-d RV +/-d KR +/- d V or K alone R+/-d RV +/-d KR +/- d, V or K or Dara alone R+/-d RV +/-d KR +/- d, V or K or Dara alone R alone or V alone R alone or V alone
MAINTENANCE
IMWG Guidelines ： Treatment at Relapse
Treatment at first relapse
Not refractory to LEN Refractory to LEN
Treatment after multiple relapses
Preferred options†: DRd or KRd
Alternatives‡: DVd, Kd, DKd, Isa–Kd, IRd, Elo–Rd, PVd, or SVd (subject to approval)
If daratumumab, isatuximab, or carfilzomib are not available: Rd, Vd, VTd, VCd, or VMP
Preferred options†: D–Kd, or Isa–Kd, or PVd
Alternatives‡: DVd or Kd
Other options: KPd, DPd, or Ipd
If daratumumab, isatuximab, carfilzomib, or pomalidomide are not available: VCd, Vd, or VMP
Any first relapse options not yet used (2 new drugs; triplet preferred)
Investigational options and clinical trial
Autologous Stem Cell Transplant Candidate?
• SCT not performed as part of frontline therapySCT
• Durable remission after 1st SCT (≥24 months on no maintenance therapy, ≥36 months with maintenance therapy)
by: Saad Z. Usmani, MD MBA FACP, @szusmaniMoreau P et al.Lancet Oncol 2021; 22: e105–18
Presented
MSKCC Myeloma Service
Saad Z. Usmani (Chief)
High-Risk Disease Biology/Trials
Bispecific Antibodies
CAR T Cells
Checkpoint Inhibitors
Developmental Therapeutics
Sham Mailankody
MM Immunotherapy
CAR T Cells
Malin Hultcrantz
MM Precursor Disease Antibody drug conjugates Genetics/MRD
Urvi Shah
Early Relapse
MM Precursor Disease
Nutrition & Modifiable Risk Factors
Alex Lesokhin
MM Immunotherapy
Bispecific Antibodies
Checkpoints Inhibitors
Neoantigens
Microbiota
Hani Hassoun
MM Supportive Care
Alliance Liaison NDMM/RRMM Trials
Elderly and Frail
Neha Korde
NDMM Clinical Trials
MRD Directed therapy
Supportive Care
Carlyn Tan
MM Precursor diseases
Supportive Care Bone Health
Presented by: Saad Z. Usmani, MD MBA FACP, @szusmaniMSKCC Myeloma TCT Program
Allo/Auto HCT for
Regimens
David Chung
Cell exhaustion
Gunjan Shah HCT Toxicities
Precision Drug Dosing
Saad Z. Usmani
High-Risk Disease Biology/Trials
CAR T Cells
Auto HCT
Toxicities
Dosing
HCT
Post HCT Therapies
Presented by: Saad Z. Usmani, Sergio Giralt Michael Scordo Auto and Allo HCT Heather Landau Amyloidosis Oscar Lahoud Auto HCT and CAR T Cells MBA FACP,MM New
CAR T Cells
T
Auto HCT + Vaccines MM Immunotherapies
HCT
Precision Drug
CAR T Cells
CAR T Cells Salvage
Toxicities Homebound HCT Precision Drug Dosing Novel Regimens for Salvage Auto
for MM
MD
@szusmani
Webinar Q&A • Open the Q&A window, allowing you to ask questions to the host and panelists. It will be sent to our moderator and panelists for discussion. • If you have a question that does not get answered today, you can contact our Infoline at 800-452-CURE (2873) US & Canada, 1-818-4877455, or email infoline@myeloma.org.
~ 15 MINUTE BREAK ~ with IMF InfoLine video
M-Power New York: Changing the Course of Myeloma
Dr. Joseph Mikhael MD, MEd, FRCPC, FACP IMF Chief Medical Officer
Translational Genomics Research Institute (TGen),
of Hope Cancer Center
Professor,
City
The core vision of
=
the short- and long-term
Power
CHANGE the current
this initiative is to improve
outcomes of African American patients with myeloma. M-Power
Myeloma
We want to empower patients and communities to
course of myeloma: Increase awareness and reduce stigma Provide quality education through deep community engagement Shorten the time to diagnosis through self advocacy and health care education Educate providers about culturally sensitive care Support the myeloma community… 69 The International Myeloma Foundation African American Initiative
- Powered
the symptoms
Ask if you should be screened
YOU Can Change the Course of Myeloma in Your Community Speak to your doctor about your risk
Talk to friends & family about what you’ve learned about Multiple Myeloma
Be M
Know
@#$ % #!? %^
Education at the
Community Level Pilot City: Launched March 2021 September 2021 November 2021 October 2022
Community Outreach • Social Media Campaigns including Black History Month • M-Power Announcement & Press Release • M-Power Website with Toolkit • Patient Stories • Community Workshops • Myeloma Made Simple video • Teaming up with local organizations to provide community ed particularly in churches • Post ASH Facebook Live • Kappa Alpha Psi Black Health Matters Summit booth
Ways
Which
in
We Have Collaborated in many communities 470 Physical Posters + eversion Customizable Education Options presented to community leaders (e.g. faith nurses, divine 9) who then bring the education to their communities Cancer Resource Bags delivered to neighborhoods and YMCA Health Fair Myeloma Added toFamily EducationCancerProgram Myeloma as the 5th Cancer in communityeducationcancer Slides w 5 min suggested M-Power.myeloma.org
75
M-POWER WEBSITE
76
EDUCATION FOR PRIMARY CARE PROVIDERS
Remember that there is typically a DELAY in diagnosis of myeloma in all patients
Our goal is to reduce this time delay by educating the primary care communities in these cities with a focus on:
* Recognizing the signs and symptoms of myeloma
* Discriminating myeloma from other diagnoses such as diabetes
* Proper use of testing to capture the accurate diagnosis of myeloma
* Guidance as to referral to Hematology and Oncology
EDUCATION
FOR PRIMARY CARE PROVIDERS The IMF Nurse Leadership Board has published a paper for nurses in the care of myeloma patients who are African American Similarly, a group of physicians are working on a similar paper for the physician community Key themes include: * Knowing the facts about myeloma in the African American community * Practical tools to facilitate care including the use of resources * Culturally competent/sensitive care * Clinical trial participation
Best Practices for Nurses
The IMF Nurse Leadership Board published a paper on Best Nursing Practices
Please reach out to us! 81 Website myeloma.org IMF InfoLine 800 452 CURE (2873) Website m-power.myeloma.org We have had over 280,000 hits on the M-Power website!!
Communicating
Amy E. Pierre, RN, MSN, ANP-BC
with your Healthcare Team: A 2-Way Street
Memorial Sloan Kettering Cancer Center, Flatiron Health & IMF Nurse Leadership Board
EMERGENCY ROOM • Severe pain—often spinal fractures • Kidney failure 84 HOW PATIENTS WITH MYELOMA COMMONLY PRESENT Brigle K, et al. J Adv Pract Oncol [in press]. Brigle K, et al. Clin J Oncol Nurs. 2017;21(5 suppl):60-76. Faiman B, et al. J Adv Pract Oncol. 2016;2016:7(suppl 1):17-29. Kurtin S, et al. J Adv Pract Oncol. 2016;7(suppl 1):59-70. MEDICAL EMERGENCY; need immediate treatment! MEDICAL EMERGENCY; need immediate treatment! VISIT FOR SPECIFIC COMPLAINT • Persistent symptom or injury • Abnormal test result (eg, x-ray) ROUTINE PHYSICAL • Patient with few/no symptoms • Abnormal blood work NON-EMERGENCY; More time for shared decision-making NON-EMERGENCY; More time for shared decision-making
SHARED DECISION MAKING: TAKE CHARGE OF YOUR CARE 85 Keep a contact list of your providers Understand the different roles Orchestrate your care Consult a specialist Be M-Powered ► Ask questions ► Participate in decisions ► Communicate effectively with your entire team Subspecialists Allied Health Staff Primary Care Provider (PCP) Family/Support Network Myeloma Specialist General Hem/Onc You andYour Caregiver(s)
WHAT TO COMMUNICATE ► Family History ► Risk factors also include Black race, male, age, obesity ► Symptoms ► Don’t ignore or self-medicate for pain ► Avoid the emergency room ► Side Effects ► Questions About Test Results and Treatments ► YOUR Priorities, Preferences and Goals for Treatment
HOW AND WHEN TO DISCUSS PRIORITIES Have these conversations… • Whenever your treatment stops working • Whenever you start a new treatment • Whenever there is a change in your life priorities • Whenever you have a question or concern Ask Important Questions at Your Appointments • What Can I Expect Now? • What Can I Expect In the Future? Available for download at myeloma.org
HOW AND WHEN TO DISCUSS PRIORITIES
Myeloma cells in excess can cause symptoms Treatments for myeloma kill myeloma cells but can cause symptoms Myeloma and Treatments Both Contribute to How You Feel • Calcium elevation • Renal dysfunction • Anemia • Bone pain • Myelosuppression • Peripheral neuropathy • Diarrhea • Fatigue • Fatigue • Infection • Other symptoms • Deep vein thrombosis • Infection (eg, shingles) • Other symptoms 89 DISCUSS: SYMPTOMS AND SIDE EFFECTS
EXAMPLE: STEROID SIDE EFFECTS AND MANAGEMENT • Consistent schedule (AM vs. PM) • Take with food • Stomach discomfort: Over-the-counter or prescription medications • Medications to prevent shingles, thrush, or other infections Managing Steroid Side EffectsSteroid Side Effects • Increase in blood sugar levels, diabetes • Weight gain, hair thinning/loss, skin rashes • Irritability, mood swings, depression • Muscle weakness, cramping • Blurred vision, cataracts • Difficulty sleeping (insomnia), fatigue • Flushing/sweating • Stomach bloating, hiccups, heartburn, ulcers, or gas • Increased risk of infections, heart disease • Increase in blood pressure, water retention Steroids help kill myeloma cells. Do not stop or adjust steroid doses without discussing it with your health care provider. King T, Faiman B. CJON. 2017; 21(5)suppl:240-249. Faiman B, et al. CJON. 2008;12(3)suppl:53-63. 90
EXAMPLE: GI SYMPTOM PREVENTION &
• Diarrhea may be caused by
MANAGEMENT
– Laxatives, antacids with magnesium
– Antibiotics, antidepressants, others
– Milk thistle, aloe, cayenne, saw palmetto, ginseng
– Sugar substitutes in sugar free gum
• Increase fluid intake
– Avoid caffeinated, carbonated, or heavily sugared beverages
• Take anti-diarrheal medication
– Imodium®, Lomotil®, or Colestid if recommended
– Fiber binding agents – Metamucil® , Citrucel®, Benefiber®
– Welchol® if recommended
• Constipation may be caused by
– Opioid pain relievers, antidepressants, heart or blood pressure medications, others
– Supplements: Calcium, Iron, vitamin D (rarely), vitamin B-12 deficiency
• Increase fiber
– Fruits, vegetables, high fiber whole grain foods
– Fiber binding agents –Metamucil®, Citrucel® , Benefiber®
• Increase fluid intake
– to work with fiber, also good for kidneys
Discuss GI issues with health care providers to identify causes of and make adjustments to medications and supplements.
Smith LC, et al. CJON.2008;12(3)suppl:37-52. Faiman B. CJON. 2016;20(4):E100-E105. 91 91
EXAMPLE: DEEP VEIN THROMBOSIS (DVT ) AND PULMONARY EMBOLISM (PE)• Risk Factors • Personal or family history • Lifestyle (obesity, smoking, inactivity) • Medical (medications, surgery • Symptoms • Swelling, tightness, ache/pain, change in color or temperature • Chest or shoulder pain • Shortness of breath, difficult/labored breathing • Anxiety • Rapid heart rate • Provider Management • Adjusting medications and schedules (weekly steroids, types of chemo) • Prescribing blood-thinning medications according to assessed risk (aspirin, warfarin, heparin or Direct Oral Anticoagulant[DOAC]) • Anti-embolism stockings (elastic stockings) • Self Management • Lifestyle changes (stop smoking, weight mgmt) • Activity; Moving frequently when sitting long periods; Travel precautions Report DVT and PE symptoms immediately! These are considered a medical emergency & require immediate care. Noonan K, et al. CJON. 2017;21(5)suppl:37-46. Rome S, et al. CJON. 2008;12(3)suppl:21-8. 92
EXAMPLE: PERIPHERAL NEUROPATHY (PN) MANAGEMENT
neuropathy:
(hands,
Tingling
Prickling sensations
Sensitivity to
Muscle weakness
Burning pain
Prevention / management:
Bortezomib once-weekly
Massage area with
regularly
B-complex vitamins (B1,
Folic acid, and/or amino acids but do not take on day of Velcade® (bortezomib) infusion
environment: rugs,
93 • Peripheral
damage to nerves in extremities
feet, or limbs) – Numbness –
–
–
touch –
–
or cold sensation •
–
or subcutaneous administration –
cocoa butter
– Supplements: •
B6, B12) •
– Safe
furnishings, shoes • If PN worsens, your HCP may: – Change your treatment – Prescribe oral or topical pain medication – Suggest physical therapy Report symptoms of peripheral neuropathy early to your health care provider; nerve damage from PN can be permanent if unaddressed Faiman B, et al. CJON. 2017;21(5)suppl:19-36. Tariman, et al. CJON.2008;12(3)suppl:29-36. 93
•
•
DISCUSS:
ANXIETY & DEPRESSION
All can affect quality of life and relationships
•
•
•
(social
•
•
•
•
FATIGUE,
94 Ramsenthaler, et al. 2016. https://doi.org/10.1111/ejh.12790. Catamero D et al. CJON. 2017; 21(5)suppl:7-18. Often, people do not share these symptoms with their provider. Talk to your provider about symptoms that are not well controlled or thoughts of self harm. Help is available. At least 70% of patients experience fatigue, but only 20% tell their provider. Let your provider know about symptoms that are not well controlled or thoughts of self harm.
Physical sources include anemia, pain, reduced activity, insomnia, treatment toxicity, bone marrow suppression
Additional sources include financial concerns, end-of-life concerns, and changes in social and sexual function Management
Exercise (walking, yoga, etc)
Proper rest • Support
network, support group, professional counseling, etc) • Prayer, meditation, spiritual support • Mindfulness-based stress reduction
Medications
Massage, aroma therapy
Supplements: ginseng
Transfusion, if indicated
Effective management of other symptoms
comes
both
and from
DISCUSS: INFECTION PREVENTION & TREATMENT Compromised immune function
from
multiple myeloma
treatment • Personal hygiene (skin, oral) • Environmental (wash hands, avoid crowds and sick people, etc) • Growth factor (Neupogen [filgrastim]) • Immunizations (NO live vaccines) • Medications (antibacterial, antiviral) CDC website. How to ProtectYourself & Others. Accessed October 22, 2020. Report fever of more than 100.4°F, shaking chills even without fever, dizziness, shortness of breath, low blood pressure to HCP as directed. Infection is serious for myeloma patients! 95ASH 2017 Abstract #903
Financial burden comes from: • Medical costs o Premiums o Co-payments o Travel expenses o Medical supplies • Prescription costs • Loss of income o Time off work or loss of employment o Caregiver time off work 96 • Ask about a social worker, financial or nurse navigators at your hospital or clinic for assistance DISCUSS: FINANCIAL BURDEN See M-PowerCharlotte.myeloma.org
TIPS FOR COMMUNICATING WITH YOUR TEAM • Reflect on what’s important to you before each visit •Ask questions • Take notes • Bring along a listener • Ask for time to consider your options • Continue to learn about Myeloma so you are more comfortable with the conversation
IMF HAS MANY FREE RESOURCES TO HELP YOU IMF InfoLine: 1-800-452-CURE | 9am to 4pm PST IMF Videos such as Ask Dr Durie www.myeloma.org www.M-PowerNewYork.Myeloma.org/
A Conversation with Patient & Care Partner Team, Terrence and Toni Green
Joseph Mikhael MD, MEd, FRCPC, FACP Chief Medical Officer, IMF
Closing and Survey
International Myeloma Foundation
in collaboration with Memorial Sloan Kettering Cancer Center
Thank you to today's presenters!
Joseph Mikhael, MD, MEd, FRCPC, FACP
Chief Medical Officer
Yelak Biru, MSc
International Myeloma Foundation
Patient, President, and CEO International Myeloma Foundation
Amy E. Pierre, RN, MSN, ANP-BC
Memorial Sloan Kettering Cancer Center & Flatiron Health
Saad Z. Usmani, MD MBA FACP Chief of Myeloma Service
Memorial Sloan Kettering Cancer Center
Terrence and Toni Green Patient & Care Partner Team
Robin Tuohy Vice President Support Groups International Myeloma Foundation
Michael Tuohy 22 year Myeloma Survivor
Workshop Video & Replay Slides
As a follow up to today's workshop, we will have the speaker slides and a video replay available. They will be provided to you shortly after the workshop concludes.
Thank you for joining today’s webinar!