Dealing with a cancer diagnosis, treatment or long-term survival issues can be overwhelming. Blood cancers are complex diseases, and treatment options are evolving at a faster pace than ever.
Each day, we hear from patients and their families about the unique challenges they face, from coping with side effects to determining how to cover the cost of their care.
We at LLS believe that no one should have to face cancer alone. LLS is the leading source of free blood cancer information, education and support for patients, survivors, caregivers, families and healthcare professionals. We are committed to patients and caregivers from the time of diagnosis and throughout their cancer experience, ensuring they have access to quality, affordable and coordinated care.
For more than 20 years, LLS Information Specialists have been on the front lines of helping patients and caregivers navigate their treatments and countless emotional, financial and social challenges.
This year alone, Information Specialists responded to nearly 20,000 inquiries, connecting with patients and caregivers one-on-one and guiding them to our wide array of support services that can help.
LLS Information Specialists are master’s level oncology social workers, nurses and health educators who work with compassion to provide blood cancer patients and caregivers free personalized support, information and resources, tailored to their specific diagnosis and needs. They speak in-depth with caregivers and patients – many of them newly diagnosed – about their disease, clinical trials, financial resources, how to talk to their physicians and so much more. Information Specialists are ready to help by phone at (800) 955-4572, and live chat or email via LLS.org.
Survival rates for many blood cancer patients have doubled, tripled or even quadrupled since the 1960s, thanks to breakthroughs in cancer treatment that were made possible by clinical trials.
Enrolling in a clinical trial might be the best treatment option for certain patients. That’s why LLS continues to expand our Clinical Trial Support Center (CTSC), in which specially trained nurses help patients find and enroll in clinical trials based on highly detailed, individualized assessments.
Together, our CTSC nurses and Information Specialists guide patients and caregivers through the clinical trial process, providing them with the information and support they need to overcome barriers to enrolling, including help with finances and lodging. This year, CTSC nurses provided 562 patients with in-depth clinical trial navigation and support – up an incredible 65 percent from 2017. Even more promising: three out of five patients who were assisted by the CTSC and medically eligible enrolled in an appropriate clinical trial.
By taking part in clinical trials, patients help advance our knowledge of cancer and pave the way for better care for future patients. Contact an Information Specialist at 800-955-4572 to learn more.
Director, Information Resource Center
Why is it so important to help patients and families soon after diagnosis?
A cancer diagnosis can bring a range of emotions and feel overwhelming. Patients and families are looking for answers, but might not know what questions to ask or where to start. By reaching patients and their loved ones soon after diagnosis, we can help them become active participants in their care, as they work with their healthcare teams to make the best decisions for them.
What was the most rewarding aspect of your work this year?
I’m inspired by the transformations I see, as patients who first connect with our Information Specialists evolve into “experts” who are truly part of the decision-making process with their healthcare teams. Through this transformation, many patients and family members go on to volunteer with LLS and provide hope to others.
What do you wish more people realized about LLS’s efforts to help patients and families?
LLS is here for you and your loved ones throughout your cancer experience. We have so many resources that can help, and we’re only a phone call away. And you can join our efforts – nearly 8,000 volunteers across the country provide direct support to patients and families in their communities, and this support makes all the difference.
In 2010, Josh was with his wife on their honeymoon when he noticed a bean-sized lump on the back of his neck. After being misdiagnosed twice, Josh was diagnosed with follicular lymphoma (FL) at the age of 49. For several years, he was treated with an array of different therapy regimens. However, he continued to relapse and the FL ended up transforming into diffuse large B-cell lymphoma (DLBCL). With the help of LLS’s Clinical Trial Support Center and his oncologist, Josh enrolled in a clinical trial for CAR T-cell immunotherapy in June 2016. Today, the 57-year-old professional photographer is cancer-free and remains an avid surfer. In addition to receiving help from LLS to enroll in this clinical trial, Josh later realized that LLS played an instrumental role in advancing his therapy, investing $2.5 million in this innovative clinical trial. In fact, over the past two decades, LLS has provided $40 million in funding to develop this revolutionary approach to treating cancer and history was made in 2017 when two LLS-funded CAR T-cell immunotherapies were approved by the U.S. Food and Drug Administration.
The healthcare landscape is constantly changing. LLS recognizes that knowledge is power, so we offer a variety of educational resources and programs to help patients, caregivers and healthcare professionals stay informed and up to date. This year, LLS:
Personal connections and one-on-one support can make all the difference in the lives of cancer patients and their families.
As a voluntary, community-based health organization, we have regional and local chapters throughout the United States and Canada to reach patients and their families in every community. We also give patients and caregivers a comfortable, welcoming place to connect online through LLS Community, where they can find support, access the latest disease and treatment information and engage with trained LLS staff. LLS offers a variety of ways for patients and caregivers to find connections and support. This year, LLS:
We are dedicated to helping patients and families cope with the often insurmountable financial burden that cancer brings.
This year, about one-third of inquiries to LLS’s Information Specialists were from patients with financial issues and questions. In addition to our advocacy efforts to fight the rising cost of cancer care, we provide programs, resources and financial assistance to help patients in need with cancer-related expenses. This year, LLS:
Eating well during and after cancer treatment can help patients feel better, maintain their strength, avoid treatment delays and speed recovery.
Cancer changes patients’ nutritional needs, and sorting through the vast amount of nutrition information online is a daunting task. To help cancer patients and caregivers find reliable nutrition advice and resources, LLS now offers free one-on-one nutrition consultations with a registered dietitian with expertise in oncology nutrition. This year, nearly 1,000 patients and caregivers received nutrition consultations.
Caregiving can be a demanding role, but is better managed with careful planning, good self-care and knowledge of available help. LLS is here to help. We offer a wide range of resources, information and support that help both patients and caregivers. If you are a caregiver, know that you are not alone – 29 percent of all inquiries to Information Specialists were from caregivers and more than 1,800 caregivers are on LLS Community to connect, share experiences and provide support, along with trained LLS staff. Whether you join a live, weekly online chat moderated by an oncology social worker, participate in an LLS Family Support Group in your community, or tune in to The Bloodline with LLS podcast, you can find the support that is right for you.
© 2018 The Leukemia & Lymphoma Society