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RYE BROOK, N.Y. (August 8, 2017) – Where can I get good information about my cancer and treatments? Should I get a second opinion? Is there anyone I can talk with who has been through this? Where can I get financial assistance to help cover the cost of my treatment? How do I talk with my loved ones and children about my disease? These are just a few of the hundreds of questions Blood Cancer Information Specialists at The Leukemia & Lymphoma Society answer day-in and day-out.
Because there are breakthrough discoveries in cancer treatments every day, patients and caregivers need up-to-date information, education, and support to help navigate these complex diseases, treatments, financial, emotional, and social challenges.
According to LLS President and CEO, Louis J. DeGennaro, Ph.D., “There is no other organization that provides the level of patient support and service that we do. Our trained, compassionate Blood Cancer Information Specialists spend hours talking with patients – many of them newly diagnosed – about their disease, clinical trials, how to talk to their physician, and so much more. In addition to our significant investment in research to find cures, LLS is a patients first organization. We launched our Blood Cancer Information Specialist group in 1997 - this work is in our DNA!”
LLS Blood Cancer Information Specialists are available by phone at (800)955-4572, and live chat or email via LLS.org – Monday to Friday, 9 a.m. to 9 p.m. ET. (Please view a video about the LLS Information Specialists and their work here.)
The LLS Information Specialists are social workers and nurses who work one-on-one with blood cancer patients and caregivers, connecting them to free personalized information tailored to a patient’s specific diagnosis as well as to a variety of free resources and services, including:
Clinical Trial Support Center – A highly unique and comprehensive service to assist patients in accessing clinical trials.
- Financial Support – Assistance with the cost of treatment, transportation and daily expenses.
- LLS Community – A free online network providing support and education to thousands of blood cancer patients and their caregivers.
- Patti Robinson Kaufmann First Connection Program – Peer-to-peer support program to help patients and caregivers cope with their disease by matching them with trained volunteers who have also been touched firsthand by a blood cancer.
- Co-Pay Assistance – Help for eligible blood cancer patients to pay for prescription drug co-pays and health insurance premiums.
- Local Support Groups – A program that gives patients and their families a place to go where they can share information, education and feelings in a comfortable and caring environment.
Meet patients who have been helped by The Leukemia & Lymphoma Society Information Specialists…
Jami Cameron – Clinical Trials Support Center
At 30 years old, I was diagnosed with diffuse large B-cell lymphoma. Since that time, I have undergone a number of treatments including chemotherapy, radiation, surgeries, and an autologous stem cell transplant. My lymphoma relapsed four times, and I even battled breast cancer in between.
I contacted The Leukemia & Lymphoma Society’s (LLS) Information Specialists in 2015 and they provided incredible one-on-one support and information while I considered, then received a stem cell transplant.
Just six months after my transplant, I relapsed. I had exhausted all other standard treatments. So, I reached out to LLS once more and was connected to their Clinical Trials Support Center. Thanks to LLS and my doctor, I entered a clinical trial for chimeric antigen receptor T-cell therapy (CAR T). Today, I am in remission.
Without this treatment, I would not be alive today and I am forever grateful for the service and support that the LLS provided me exactly when I needed it. It saved my life.
Jasmin Egan – LLS Community
In October 2014, at 38 years old, I was diagnosed with acute myeloid leukemia (AML). Although I had heard of leukemia before, I never truly knew what it was. By the time I went home to tell my two children that I would be away for a little while to receive treatment, I went completely numb.
For more than two years, my life included hair loss, many overnight stays at the hospital, and frequent doctor visits. My doctor introduced me to The Leukemia & Lymphoma Society’s (LLS) free patient online community, LLS Community, which allowed me to connect with so many others who were going through exactly what I was enduring. It was comforting to hear from others about how they were dealing with the effects of treatment and their disease.
During a checkup in June 2017, I was elated to learn all of my blood counts were normal. Today, I still keep in touch with other patients I have met through LLS Community. They have become lifelong friends.
Jackie Pryor – Co-Pay Assistance Program
I would have never imagined that at the age of 29, I would be lying in intensive care fighting for my life with stage IV anaplastic large cell lymphoma (ALCL). After months of illness, I woke up to learn my true diagnosis. By the time I opened my eyes, I had already undergone my first five-day round of chemotherapy with five more sessions to go. I knew it was going to be a long summer.
The treatments, emotional struggles, and spiritual awakenings were only part of the battle. Soon enough the bills began rolling in. While insurance policies, retirement plans, a couple of savings accounts for a rainy day, and frugal spending were all my style, lymphoma was not part of the plan. I turned to The Leukemia & Lymphoma Society’s (LLS) Information Specialists, who provided me financial assistance through a Co-Pay Assistance Program. This financial support helped me free up money for other expenses I incurred.
The support I received from the LLS Co-Pay Assistance Program relieved some of the stress associated with making it from one month to the next. I feel so immensely blessed to have access to this type of support and see the difference in what I am able to do for myself in maintaining my household. I now am able to balance a meaningful lifestyle, despite being on long-term disability income.
Jerri Kropf - Patient Access/First Connection
In February 2016, I was admitted to the emergency room after experiencing unusual symptoms. Shortly after, I was diagnosed with Hodgkin lymphoma.
I can still remember the oncologists going over my prognosis, it was an extremely difficult time. I spoke with a representative from The Leukemia & Lymphoma Society (LLS) on the phone, and they shared words of encouragement and provided the support and resources I needed. Over the next six months, I went through radiation and chemotherapy treatments. Today, I am in remission.
I was able to participate in LLS’s First Connection program where I could speak to someone who was going through a similar experience. I am forever thankful for the support I received from LLS since my cancer diagnosis. From the financial assistance provided through its Co-Pay Assistance Program, to the guidance and education from LLS’s patient support team, it has had a huge impact on helping me get through the hardest time in my life.
Keith Rohleder - Information Specialists
"I need to speak to you as soon as possible," the doctor said. I had a strong feeling the news would not be good. When we spoke, he diagnosed me with a rare and aggressive form of blood cancer called blastic plasmacytoid dendritic cell neoplasm (BPDCN). It is so rare that most doctors have never even heard of it.
My wife’s friend suggested that I call The Leukemia & Lymphoma Society’s Information Specialists. A nurse specialist listened attentively to me, and served as my personal case manager. She researched the disease and found innovative treatment options for me, spending hours on the phone to conduct research and call cancer centers.
LLS connected me with the right doctors and hospitals. They made it possible for me to receive treatment with a leading doctor, Dr. Andrew Lane at Dana-Farber Cancer Institute, who is currently working to establish a BPDCN clinic. Without LLS serving as my personal treatment navigator, I may have never found Dr. Lane and would not be doing as well as I am today.
Sawyer Sanchez - Information Specialists
While on vacation across the country, I was diagnosed with acute myeloid leukemia (AML). I was immediately flown home and started receiving chemotherapy. With my parents at the hospital around the clock, the rest of my family turned to The Leukemia & Lymphoma Society (LLS) for help.
LLS was the comforting voice that helped my family and me navigate the complex treatment process. LLS’s Information Specialists were always ready and available to respond to our emails and phone calls. They provided us with information about transplant centers, doctors, resources, and sent written materials to help with fundraisers, transplant donor drives and clinical trials.
I was fortunate to receive help from many groups and individuals, but LLS continues to be a significant resource. I am now seven months removed from my transplant and doing great. My doctors continue to reduce my medications, and I am regaining my strength and stamina. I am excited that I will return to high school this fall for my senior year.
Meet the The Leukemia & Lymphoma Society’s Information Resource Center Directors
Meredith Barnhart, Director, The Leukemia & Lymphoma Society Information Resource Center
Meredith Barnhart, LCSW, joined The Leukemia & Lymphoma Society in June 2016 as an Information Specialist in the Information Resource Center. Prior to joining LLS, Meredith was employed for ten years as a clinical social worker in the Department of Pediatrics at Memorial Sloan Kettering Cancer Center, and she brings to LLS her expertise of working with children and families impacted by cancer. Meredith holds a master’s degree in social work from Columbia University and is presently pursuing a PhD in social work from the Graduate School of Social Service at Fordham University. Her dissertation research focuses on families with multiple incidences of cancer.
“Knowing each and every day I am providing families with blood cancer education, support, and access to a potential cure has been the most profound and rewarding experience. I hear on a daily basis about blood cancer’s impact on the day-to-day life of the whole family, and this strengthens my commitment to drive forward our goal to improve the lives of patients and their families,” said Meredith.
Michelle Rajotte, Associate Director, The Leukemia & Lymphoma Society Information Resource Center
Michelle Rajotte, LMSW, has worked in LLS’s Information Resource Center for almost 12 years. First as an Information Specialist and then as a senior manager, she has assisted and educated those touched by blood cancers when they reach out to LLS for resources, information and support. Michelle has a master’s degree in social work from New York University and a bachelor’s degree in psychology from Quinnipiac University. In addition to working with blood cancer patients and their families, she also has experience assisting individuals with developmental disabilities, adults with psychiatric diagnoses, and children and adolescents with various medical issues.
“Working at LLS for almost 12 years, my eyes have been opened by the thousands of people I have spoken with who have had their lives impacted by blood cancer, and on a personal note, by having my mother-in-law pass away from complications of chronic lymphocytic leukemia. I hope to see the day when LLS has achieved a world without blood cancers. I am very honored and proud to be a part of this monumental mission,” said Michelle.
The Leukemia & Lymphoma Society’s Blood Cancer Information Specialists
CONTACT: Linda Heaney, linda.heaney@lls.org, 914-821-8208