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June 22, 2010 - Partners in Progress: An Expert Panel Discussion on Advancing Therapies for Blood Cancers

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Date: June 22, 2010
Read: Transcript | Transcript (Spanish)
Download: Program Slides
Listen:
Part 1 | Part 2 | Part 1 (Spanish) | Part 2 (Spanish)
Watch: Virtual Lecture

Topics Covered

  • The treatment decision making process
  • How to be an active participant in your care
  • Informed consent for treatment in a clinical trial
  • Financial health matters

Speakers

Stuart L. Goldberg, M.D.
Chief, Division of Leukemia
John Theurer Cancer Center
Hackensack University Medical Center
Hackensack, NJ
Associate Clinical Professor of Medicine
University of Medicine & Dentistry of New Jersey
Newark, NJ

Gail J. Roboz, M.D.
Director, Leukemia Program
Associate Professor of Medicine
Weill Medical College of Cornell University
New York-Presbyterian Hospital
New York, NY

Maria Baldo, M.S., PA-C
Senior Physician Assistant, Leukemia Service
Weill Medical College of Cornell University
New York-Presbyterian Hospital
New York, NY

John J. Hughes
MDS Survivor
Clinical Trial Participant
Bayonne, NJ

Louis J. DeGennaro, Ph.D.
Executive Vice President and Chief Mission Officer
The Leukemia & Lymphoma Society
White Plains, NY

Summary

Survival among people with blood cancers has doubled, tripled and even quadrupled during the last 40 years, with dramatic advances in the last decade. Substantial progress has been made because of research in the laboratory and through the partnership of the healthcare team and patients in clinical trials.

Drs. Goldberg, Roboz and DeGennaro; Ms. Baldo and Mr. Hughes discuss a number of important aspects of blood-cancer treatment. Among them are the treatment decision-making process, potential benefits of receiving treatment in a clinical trial, ways to help patients actively participate in their care, financial matters related to trials and the impact of research on new therapy development. After the presentations, panel members answer audience questions.

Program Highlights

  • As recently as 10 years ago, patients with various types of blood cancer didn't have the access they have today to certain kinds of life-extending therapies.
  • Participation in clinical research helps to advance blood disease treatments.
  • Clinical research is comprised of several phases, each of which is designed to answer a specific research question:
    • Phase I trials study whether a new treatment is safe for humans and at what dose.
    • Phase II trials assess whether a new treatment is effective for a particular disease.
    • Phase III trials examine whether a new treatment is better than the standard therapy.
  • Fewer than 10 percent of patients in the United States participate in clinical trials for new therapies.
  • More children participate in clinical trials than adults; more people in Europe participate than in the United States.
  • Clinical trials have led to significant successes in the treatment of various blood cancers, including chromic myeloid leukemia (CML), acute promyelocytic leukemia (APL), Hodgkin lymphoma, childhood acute lymphoblastic leukemia (ALL) and hairy cell leukemia.
  • Objectives of clinical trials may include:
    • comparing existing treatments
    • providing access to novel therapies
    • assessing an intervention's effect on a group of patients
    • studying characteristics of patients
  • Patients may have concerns about participating in clinical trials, such as not wanting to be a "guinea pig," being too old, costs, fear of receiving a placebo and patient privacy. Patients should discuss these concerns with their doctors, who can address and clarify these issues.
  • Patients must understand a study's details, how to enroll and what's involved in the informed consent procedure.
  • Patients need to understand the potential benefits and risks of participating in a study as well as their rights and responsibilities.
  • Among the benefits of participating in a trial are patients' access to medications and procedures not otherwise available to the public, access to doctors who are the top in their field and the motivation knowing that research may help benefit other patients.
  • Participation is voluntary; patients can stop participating in a study at any time.
  • The informed consent document signed by the patient contains all the study details, risks and benefits of participation, confidentiality and information about any costs that may be incurred and who is responsible for costs.
  • Eligibility criteria consist of disease type, patient age, disease stage, other treatments being used and other illnesses or conditions a patient may have.
  • Patients should ask their research team or doctor several questions, including how study tests and procedures compare with those a patient would have outside the trial, whether patients can continue taking other regular medications, who will be in charge of patient care and how participation may affect daily life.
  • LLS has several research programs under way, including:
    • preclinical studies with animals focusing on post-transplant lymphoproliferative disorder and diffuse large B-cell lymphoma
    • phase I trials looking at chronic lymphocytic leukemia, follicular lymphoma, acute leukemias and leukemia and lymphoma
    • a phase II trial for acute myeloid leukemia
    • a late-stage phase III trial for myelodysplastic syndromes
  • LLS Patient Services programs offer education and support as well as clinical trial matching services to patients. LLS also lobbies at the federal and state levels for legislation important to blood cancer patients.

Questions Asked by the Blood Cancer Community

  • How do doctors discuss treatment options with patients?
  • Do doctors expect patients to research clinical trials on their own?
  • Should a patient ask the doctor about a clinical trial if the doctor doesn't mention it first?
  • What LLS resources are available to patients to help better understand clinical trials and the process of speaking with doctors about studies?
  • What are key questions patients should ask doctors about clinical trials?
  • What options are available for patients who can't participate in a clinical trial?
  • What is TrialCheck®?
  • What do patients need to consider when evaluating whether to participate in a clinical trial?
  • Why is the informed consent document so detailed?
  • When reviewing an informed consent document, why might patients worry that the trial drug has more safety considerations than standard therapy?
  • Why is it essential for patients to know their disease's exact name?
  • What are some ways doctors help patients with the decision-making process regarding participating in a clinical trial?
  • Why is it helpful for patients to review all the information about a clinical trial with the doctor a second time?
  • How do doctors help manage patients' side effects?
  • What are the costs of participating in a trial?
  • Is the experimental treatment provided at no cost to the patient?
  • What's the role of the institutional review board (IRB) and how does it protect patients' rights in clinical trials?
  • How does the IRB serve as an ongoing safety monitor?
  • When might the use of lymphocyte immune globulin (Atgam®) be appropriate for a patient with acute myeloid leukemia?
  • What are the differences in consent between experimental and standard therapy?
  • Why are there different potential standard therapies in clinical trials?
  • Why are there controversies about what the standard therapy (control arm) should be in blood cancer studies?
  • Why does standard therapy differ depending on the patient population in a study?
  • What are historic controls?
  • Why do some phase II trials not have a control arm?
  • Are most patients eligible to participate in a clinical trial?
  • When a patient wants to participate in a clinical trial, is it better for the patient to contact the study investigator directly or for the doctor to initiate the contact?
  • What should a patient do when he or she receives conflicting advice from different doctors?

Sponsors and Supporters

This program was sponsored by The Leukemia & Lymphoma Society and supported by an educational grant from Genentech and Biogen Idec and also supported by an educational donation from Amgen.

last updated on Tuesday, April 15, 2014
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