Watch & ACT

When you heard that you had chronic lymphocytic leukemia (CLL), many thoughts may have run through your head. What does this mean? What do I do next? What will happen to my family? Then you were told that treatment wasn’t recommended at this time.

How did you feel?

    Watching and Worrying: A State of Limbo

    The time between being diagnosed with CLL and beginning treatment is often called the watch & wait period. It may feel more like watch and worry. Because CLL is often not treated right away, you may feel that you have nothing to do but wait and worry about what comes next.1,2

    Uncertainty can be scary, but what if you could reduce your worry and focus on the things that matter most to you? You can. You can Watch & ACT.

    Watch & ACT is being aware of how you feel physically and emotionally, and turning that awareness into action to help you live with CLL. This active approach is about focusing on your life right now.3,4

    Watching and Waiting: Could There Be More?

    Keeping an eye on the progress of CLL and waiting to see what happens is often referred to as watching and waiting. This means that you are staying aware of your CLL and making the most of your time before treatment.1 That’s great.

    Still, it may feel like parts of your life are not in your hands—that you can’t move forward. What if you could be more involved in your care? What if there were steps you could take to help you live in the present and be ready when it’s time to decide on treatment? There are. It’s called Watch & ACT.

    Watch & ACT is being aware of how you feel physically and emotionally and turning that awareness into action to help you live with CLL. It’s not waiting. It’s taking action and focusing on your life right now.

    Do More Than Watch & Wait. ACT

    ACT logo

    How do you ACT? ACT stands for Acknowledge, Communicate, and Track. Together, these 3 actions may help you better understand your CLL, prepare for conversations with your doctor, and take a more active role in your care—so you can keep moving and living your life.5 Let’s get started.

    Acknowledge

    Living with cancer can bring a range of emotions. Acknowledging means recognizing those emotions and learning how to address them, so they’re not getting in the way of your day-to-day life. It’s not often that we pause to reflect on our emotions, but doing this is the first step to addressing them. Notice your emotions, see what might be causing them, and recognize how they’re affecting you.6-9

    Acknowledging your emotions may help you feel more prepared to talk with your doctor and others on your team. Once you’ve uncovered those emotions, you can start thinking about healthy ways you can address them. Learn about healthy ways to deal with your emotions by signing up for Know Your CLL+.

    Communicate

    Communicating is very important when you are living with CLL. Your healthcare team and loved ones want to help, but they need to know what you need. You have a lot to cope with, but you don’t have to do it alone. Your oncologist and healthcare team are good resources for information. Share your preferences, concerns, symptoms—anything that can help them provide you with the care and support you need. They can also help you decide when it’s time for treatment.10-13

    It’s not just your healthcare team. Remember, there are other people around you who want to help, including your family, friends, and members of your support groups. Keep those lines of communication open, too.

    Think about who is on your care team. Who has been there with you through it all? Who can you call when you need a helping hand? Reach out to them and be open about your needs. You may find that you’re better able to manage CLL when you have support from the people who care about you.

    Discover support and communication tips for approaching conversations with your doctors and loved ones when you get our discussion guide.

    Track

    Tracking helps you understand where you are and plan for where you want to be. It gives you a picture of how you’re doing, so you can work with your doctor to address anything that needs attention. You can track your test results and your symptoms. Your doctor can help you understand how your tests change over time. When you track your symptoms, you can share them with your doctor to spot any patterns. This may help you partner with your doctor and feel more involved in your journey.1,5,10,14,15

    You can track any way you want. It’s all about what’s convenient and easy for you. Make a list on your phone, keep a journal, make a video diary or whatever works for you. That way you can see any patterns and share them with your doctor.14

    Remember, since tracking helps you notice changes and patterns over time, it’s a good idea to track regularly.

    Acknowledge. Communicate. Track. Three actions that you can do now and that can make a big difference in how you feel about your life with CLL. So don’t just wait. ACT.

    To learn how to apply ACT to your everyday life, sign up for Know Your CLL+.

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    Start the Conversation

    Get communication tips and help approaching conversations with your loved ones and doctors when you download the discussion guide.

    Download Now >

    Focus on What Matters

    Live the life you want. Know Your CLL+ helps you know more about your CLL, improve your coping skills, and advocate for your care.

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    Know Your CLL

    What makes your CLL experience unique? Find out by answering a few questions. It may help you better understand your CLL and make decisions with your doctor.

    Test Your Knowledge >

    Wondering what to do when it’s time to begin treatment?

    Learn about the options and what they mean for you.

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    References
    1. The Leukemia and Lymphoma Society. Chronic Lymphocytic Leukemia. White Plains, NY: The Leukemia and Lymphoma Society; 2014. Publication No. PS34 40M.
    2. Shanafelt T, Bowen D, Venkat C, et al. The physician-patient relationship and quality of life: lessons for chronic lymphocytic leukemia. Leuk Res. 2009;33(2):263-270.
    3. Kim C, Wright F, Hong N, et al. Patient and provider experiences with active surveillance: A scoping review. PLoS One. 2018 Feb 5. doi.org/10.1371/journal.pone.0192097
    4. American Cancer Society. Managing Cancer as a Chronic Illness. American Cancer Society website. https://www.cancer.org/treatment/survivorship-during-and-after-treatment/when-cancer-doesnt-go-away.html. Updated February 12, 2016. Accessed October 10, 2018.
    5. The Leukemia and Lymphoma Society. Chronic Lymphocytic Leukemia. White Plains, NY: The Leukemia and Lymphoma Society; 2017. Publication No. PS48 25M.
    6. American Cancer Society. How do you know when your stress level is normal or more serious? American Cancer Society website. https://www.cancer.org/treatment/treatments-and-side-effects/emotional-side-effects/distress/normal-or-serious-distress.html. Updated June 8, 2015. Accessed October 8, 2018.
    7. National Institute of Health. A Guide for Older People: Talking With Your Doctor. National Institute on Aging website. https://order.nia.nih.gov/sites/default/files/2017-07/TWYD_508.pdf. Published December 2016. Accessed October 10, 2018.
    8. American Cancer Society. Talking with Your Doctor. American Cancer Society website. https://www.cancer.org/content/dam/cancer-org/cancer-control/en/booklets-flyers/talking-with-your-doctor-english-pdf.pdf. Updated November 17, 2015. Accessed October 10, 2018.
    9. American Cancer Society. Telling Others About Your Cancer. American Cancer Society website. https://www.cancer.org/treatment/understanding-your-diagnosis/talking-about-cancer/telling-others-about-your-cancer.html. Updated April 28, 2016. Accessed October 10, 2018.
    10. Referenced with permission from the NCCN Guidelines for Patients®: Chronic Lymphocytic Leukemia V.2019. © NCCN Foundation®. 2019. All rights reserved. Accessed May 1, 2019. To view the most recent and complete version of the guideline, go online to NCCN.org/patients. NCCN makes no warranties of any kind whatsoever regarding their content, use or application and disclaims any responsibility for their application or use in any way.
    11. American Cancer Society. Chronic Lymphocytic Leukemia. American Cancer Society website. https://www.cancer.org/cancer/chronic-lymphocytic-leukemia.html. Updated May 10, 2018. Accessed November 7, 2018.
    12. American Cancer Society. The Doctor-Patient Relationship. American Cancer Society website. https://www.cancer.org/treatment/understanding-your-diagnosis/talking-about-cancer/the-doctor-patient-relationship.html. Updated October 18, 2016. Accessed October 10, 2018.
    13. IOM (Institute of Medicine). 2013. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press.
    14. Vernooij R, Willson M, et al. Characterizing patient-oriented tools that could be packaged with guidelines to promote self-management and guideline adoption: a meta-review. Implement Sci. 2016;11(52): doi: 10.1186/s13012-016-0419-1.
    15. National Institute of Health. A Guide for Older People: Talking With Your Doctor. National Institute on Aging website. https://order.nia.nih.gov/sites/default/files/2017-07/TWYD_508.pdf. Published December 2016. Accessed October 10, 2018.