Blood Cancer Awareness Month: A CLL Patient’s Experience and the Power of Partnership

This special edition blog features a conversation between Terry, a patient with the blood cancer chronic lymphocytic leukemia (CLL), and Lisa Porat, Oncology Social Worker and U.S. Lead, Patient Advocacy, BeiGene.

Why is Blood Cancer Awareness Month important for patients and caregivers?

Terry: Blood Cancer Awareness Month is a crucial time for patients and caregivers for several reasons:

It increases awareness because in some cases, blood cancers are considered orphan diseases, and they don’t get as much publicity as some of the other cancers. This awareness can help to understand symptoms, early detection and can lead to better treatments.  It also brings together the community of patients, survivors and caregivers to give them encouragement and a sense of belonging.  It is important for survivors to share their stories to give hope and optimism for patients and their families.

For caregivers, it offers opportunities to learn more about blood cancers, treatment options, and available resources. Connecting with other caregivers can provide valuable emotional support and practical advice. The increased attention on blood cancers can bring attention to the challenges faced by caregivers, potentially leading to more support and resources. Ultimately, Blood Cancer Awareness Month is a time to unite the community, raise funds for research, and work towards a future without blood cancer.

Lisa: I echo Terry— It’s crucial to engage as a supportive community for people with cancer and their caregivers. We must consider the entire patient, their journey, and the wide range of emotions that come with a cancer diagnosis. We’re dealing with people’s lives and stories, not abstract products. We need to talk about it and continue to elevate patient voices this month and beyond. It is our chance to lend our voices to unite our communities and honor our patients with blood cancers.

Terry, what strategies do you use to manage the physical and emotional challenges of CLL?

Terry: CLL is usually a marathon, not a sprint. Typically, you have time to make decisions on treatments. Unfortunately, it is a journey marked by uncertainty, but we can take this time to educate ourselves and build a strong support network.

You can help manage the physical challenges of CLL by using a common-sense approach to maintaining a healthy lifestyle by choosing a balanced, diet, having some sort of regular exercise plan and getting enough rest.   This is not just for CLL, but for your entire body’s wellbeing.

If you are in treatment, make sure you follow your medical team’s recommendations and discuss ways to mitigate potential side effects.  You should also not neglect all of the other regular checkups that you would normally get, like mammograms, dermatology visits, PAP smears and PSA tests. 

As for the emotional challenges, unfortunately, not everyone will understand your CLL.  It may be difficult to talk to family and friends about your disease, especially when you don’t ‘look sick’.  That is why joining a support group that is made up of people that are in the same position as you can make a world of difference.  

Don’t be embarrassed to seek therapy or counseling to manage anxiety or depression.  There are also other resources available like the CLL Society and the Leukemia & Lymphoma Society to help educate and support patients and caregivers.

Remember, everyone’s experience with CLL is unique. What works for one person may not work for another. It’s essential to find strategies that work best for you and to seek support from healthcare professionals and loved ones.

Lisa, how do you see the patient advocacy role fit within the pharmaceutical industry?

Lisa: As an oncology social worker with over 30 years of experience, I have always championed the needs of patients and caregivers, whether at bedside, in advocacy, or in an industry role. Elevating interactions with patients is a hallmark of my work. 

At BeiGene, we honor the importance of meaningful and respectful connections with patients and advocates. Our engagement is critical, and my role allows me to bring unique clinical skills to an industry setting. I hear often that the work we do in industry gives patients hope—and that hope is the reason I come to work every day.

Biomarker testing is becoming more of a hot topic for people with CLL—what are your thoughts on getting tested?

Terry: Biomarker testing is increasingly recognized as a crucial component of CLL management. These tests provide valuable insights into the specific characteristics of a patient’s CLL, aiding in identifying patients at a higher risk for disease progression. It also helps in matching patients with the most effective treatment. 

You should consider biomarkers because it can help tailor treatment plans to individual patients and by identifying high-risk patients early, more aggressive treatment can be considered. The testing can also identify patients that may qualify for specific clinical trials. Unfortunately, biomarker testing is not always done as a part of the patient’s treatment planning. Patients should always inquire with their doctors about what tests have been done and how do these tests influence their treatment.

Lisa: Helping patients understand their disease, including their biomarkers, is crucial for empowering them to regain control and educate themselves. Patients need a clear understanding of their health and disease to engage effectively in the decision-making process.

What message would you like to share with others about living with CLL and raising awareness?

Terry: Raising awareness about CLL is crucial. By sharing our stories, we can break down stigma, educate others, and inspire hope. We can advocate for better research, treatment options, and patient support. Together, we can create a future where CLL is better understood and managed.

There’s a community of people walking this path with you. Connect with others, share your experiences, and find strength in your shared journey.

Lisa: You are not alone. Survivors, advocacy organizations, and companies like BeiGene are here for you. Knowing you have support, can regain control, and find hope are crucial for coping with your diagnosis.

How important is the collaboration between patients and pharmaceutical companies in advancing treatment and care?

Terry: I have found that over the last few years the pharmaceutical companies have taken great strides in getting the opinions of patients in areas like clinical trials, patient education, and patient support. Sometimes it takes the patients to ask their medical team about new treatments and how they might pertain to their care. Thru supporting webinars and educational videos the companies can provide information about CLL that may not be available for the patient to access. Patients bring firsthand experience of a disease, including symptoms, side effects, and treatment challenges. This invaluable input can help pharmaceutical companies develop more effective and targeted medications.

Collaboration can lead to better understanding of patient needs, resulting in improved patient education, support services, and access to care. Overall, the collaboration between patients and pharmaceutical companies has the potential to revolutionize healthcare by driving innovation, improving patient outcomes, and building stronger partnerships. 

Lisa:  How can I top Terry’s answer?  He nailed it—we must collaborate to understand patient needs and include them in discussions early in the process, from protocol development onward. Engaging patients early and often ensures they are heard, improves access and quality of life, and helps us appreciate the impact of treatments on outcomes.

Let’s Talk About It is our monthly blog series designed to talk frankly about some of the real-life challenges and the resiliency of living with a diagnosis of cancer, as well as to provide resources and empower others. If you have topics you’d like Lisa or guest contributors to explore, please email us patientadvocacy@beigene.com with your ideas.  

We believe in you and the power of your story. We thank you for sharing your journey with us and others.

Lisa Marquette Porat, MSW, LCSW, FAOSW is an oncology social worker and the U.S. Lead, Patient Advocacy for BeiGene