On July 26th at the Fred Hutchinson Center, Patient Empowerment Network, Seattle Cancer Care Alliance and Patient Power are hosting a live patient forum for those patients, families and caregivers who are coping with living with Chronic Lymphocytic Leukemia.
Expert physicians talk, panels discuss and patients tell their stories. All learn from this unique experience.
Physician experts included:
David Maloney, MD, PhD, Member, Clinical Research Division; Professor of Medicine, Division of Oncology, Fred Hutchinson Cancer Research Center, University of Washington School of Medicine
John Pagel, MD, PhD, Associate Member; Associate Professor, Division of Oncology, Fred Hutchinson Cancer Research Center, University of Washington School of Medicine
Drs Maloney and Pagel talked about treatment options and new developments in the field of CLL. The current treatment options of chemotherapy, antibodies, BTK inhibitors and combination therapies were discussed and the treatments in development were then presented and carefully explained. Dr Maloney talked about his work on Chimeric Antigen Receptors (CARS) as well as other new research developments. Great care was taken by both physicians to point out that treatment is extremely individual and should be a decision reached after careful and thorough discussions with the patient and medical team.
Patient panelists were:
Charlie, Patient Advocate , Esther Schorr, Caregiver, Rich Siegel, Patient Advocate, and Lisa Weiss, Patient Advocate
The panelists introduced themselves and gave a brief history of their experience living with CLL. Experiences ranged from Charlie who has been asymptomatic and has never received treatment for CLL to Lisa who has had numerous treatments and relapses during her journey with the disease.
The common thoughts and messages running throughout the presentations were those about support of family and friends and the importance of living well, living healthy and enjoying each day as it comes. The feeling in the room was a positive one. Be as educated about the disease as you can be, make sure that you have an excellent doctor and medical team that you can rely on, join support groups or start them, and be grateful for each moment.
In the afternoon, Drs Maloney and Pagel spoke of treatments, side effects and the importance of communication and mutual trust. Several points were discussed:
- Trust your doctor – get a second opinion if you wish, but once you have found a doctor that you feel comfortable with, trust him or her.
- Be informed and read up on your condition
- Communicate with your doctor and medical team and ask questions
- Be careful about taking vitamins, supplements or other products. Discuss all products with your doctor
- What works for one person may not work for another. All treatment is individualistic
- Use common sense and lead as healthy a lifestyle as you can.
The patient and caregiver panel had some words to share on living with CLL:
- You are not alone! Ask for help and include family members in the discussion; you need their support.
- Do not depend on your oncologist/hematologist to provide emotional support. Get professional counseling or group support. There are many organizations and online patient support groups that can be very helpful.
- Live well and live healthy. Use common sense with diet and exercise. If you want to take any vitamins or supplements, discuss with your doctor first.
Caregivers and family members were a large part of this event. They talked about their hopes and fears, about involving their children in frank discussions about illness, death, what the future may bring and how to cope with a family member who has a serious illness. Spouses, siblings and children of patients spoke out. The energy, hope and commitment was felt by all. It was a powerful meeting indeed!