Patient Cafe® – CLL 2016
Patient Cafe ® – Multiple Myeloma 2016
Patient Cafe® is a series of virtual meet-ups for cancer patients. Patients meet via Zoom.us, an easy to use video conferencing platform. A host guides the meet-up and participants will share stories and connect with each other. This series of meet-ups is for Multiple Myeloma patients.
Judith A. Paice, PhD, RN, FAAN, Director of Cancer Pain Program, Division of Hematology-Oncology at Northwestern Medicine talks with a panel of four myeloma patients about the side effects and symptoms of their disease and how to manage them.
What do patients have to say about participating in research and clinical trials? This Patient Café was attended by four of the top multiple myeloma patient advocates: Jenny Ahlstrom, founder of Myeloma Crowd; Cynthia “Cindy” Chmielewski, mentor on social media @myelomateacher; Jack Aiello, Patient Power host and advocate; and, Brian McMahon, founder of SparkCures. Together, they share their stories, insights, impact of research on their personal lives.
Tags: Multiple myeloma, myeloma, myeloma treatment, myeloma research, myeloma clinical trials, Jenny Ahlstrom, Cynthia Chmielewski, Jack Aiello, Brian McMahon, SparkCures, Myeloma Crowd, myeloma patient and myeloma support
Participants offer takeaways from the session for patients who will watch these videos. They tell patients to maintain hope, pay attention to what information they can find on the internet (like these sessions!), live every day, and live well with their disease.
How the Patient Cafe™ participants deal with "Watch and Wait". Some are worried, some are scared, some feel alone. How do they deal with a cancer diagnosis with no treatment. Watch and learn from their experience!
Len is not happy with his first doctor and goes in search of another (and finds him!). Carol discusses getting a second opinion. The participants tell each other what they would do if they needed treatment.
Finding the right doctor, getting the right treatment, getting information on clinical trials and other great topical issues for patients with CLL. Led by Carol Preston, a communications expert and 9 year CLL patient.
The fourth Patient Cafe™ for CLL patients starts out by introductions all around. Carol Preston leads the group discussion about the impact of CLL on relationships and lifestyle. All participants have undergone some form of treatment although they may have started with watch and wait.
The participants share their final thoughts on the Patient Cafe® session. Mikes thought: CLL clarifies goals and priorities in life. Also, on your cancer journey, you definitely want to have a good support team (family, medical, friends). Carol's thought: get the opinion of a specialist early in your diagnosis. Sue's thought: get support through patient advocacy organizations and realize that YOU are in control of your life; your disease is NOT in control. Jerry's (Sue's partner and caregiver) thought: try and be with your partner and understand your partner's disease.
Sue talks about communicating her CLL diagnosis to her children. She feels that her children understood and handled the information well. Sue feels that she is coping well with her illness and living a full life. Mike found that sharing his feelings via his blog was a great way to organize his thoughts and deal with his illness.
The participants discuss mental attitude while they are coping with their illness. Volunteering and caring for others can help maintain a healthy attitude. Connecting and sharing stories with others who have the same disease is very beneficial and mutually supportive.
Patients should get a second opinion from a specialist and consider clinical trials. They should ask relevant questions and consider all options. They should talk over options with their families and with their medical team and make a decision that is the best for them.
The Patient Cafe® participants discuss the obstacles in clinical trial enrollment and participation and how patients could help. All agree that the Informed Consent is complex and lengthy and that patients deserve more easy-to-understand, user-friendly documents. Cost is also a factor and should be addressed well ahead of time so that patients can make informed decisions about trial enrollment.
Patient Cafe® Session Six - Stella, Len's spouse and caregiver, explains how they searched and found a specialist to be the architect of Len's treatment plan. They trusted this specialist and followed her advice and enrolled in the trial. Scott talks about his trial and his issues with side effects of treatment.