Key Steps for Newly Diagnosed CLL Patients

If you've recently been diagnosed with CLL, we're sorry that you're in a club that none of us wanted to join. The good news is that you will meet the kindest people in the CLL community and the HealthTree Foundation for CLL is here for you! 

Here are six steps to reduce your anxiety and take meaningful action:   

1. Find a CLL Specialist

If you do only one thing for your care, it will be to find and consult with a CLL specialist. According to several studies, having a CLL specialist on your team can add quality years to your life. You can always consult with a specialist periodically and get care closer to home, as your local oncologist and CLL specialist coordinate together to give you the best care. Do not leave your sole care in the hands of a local doctor. Your life is worth the effort. 

Find a CLL Specialist

2. Get the Right Tests

Before you start treatment, you should make sure your doctor performs the right tests. These include blood counts, bone marrow tests, immunohistochemistry, flow cytometry, cytogenetics, and fluorescent in situ hybridization (FISH). You can start now to become an educated and empowered patient who knows the right kind of tests, labs, and care you should be receiving. 

With the results of these tests, you will understand the type of CLL you have. Not all CLL is genetically the same. The genetic tests must be run before you get treatment, otherwise, there are no CLL cells to test. Treatment does differ between the types of CLL. You are fighting a war and you want to understand your enemy. 

What are the essential CLL tests?

3. Join HealthTree Cure Hub to Learn What Others Have Done Before You

HealthTree Cure Hub provides a suite of tools to help you stay ahead of your CLL.

Join HealthTree Cure Hub

Track Your Labs

You’ll start getting an overwhelming number of labs run and you’ll want to start tracking your CLL markers. Keep everything in a single place, like your genetic reports, CLL markers, and other critical information so you can graph your disease. You’ll also be able to access an easy graph showing how each treatment affects your CLL that you can share for second opinions.

Find Your CLL “Twin”

In HealthTree Cure Hub, our Twin Machine technology lets you see what other patients like you have received for care, based on their type of CLL. Look ahead and find your twins who are years ahead of you in treatment. Who had the longest remissions? Take notes of their treatments and discuss them with your doctor. 

Discover Side Effect Solutions

See real-world data of how people are living with their side effects and what they are doing to try and ease them. You can also share your experiences with other patients and vote on solutions that have been successful for you in combating your side effects. By sharing our experiences, we can help each other have a better quality of life.

Contribute to Research *Surveys and Studies Coming Soon*

Add as much information as you can or upload your electronic health records to HealthTree Cure Hub to help CLL researchers connect the dots through anonymized patient stories. There are also surveys and studies that you can participate in by CLL specialists from around the world. These simple, yet innovative surveys and studies will help CLL experts accelerate CLL research.

Join HealthTree Cure Hub

4. Start Learning through HealthTree University

Chances are before being diagnosed with CLL, you had never heard of the disease before. It's overwhelming to receive that diagnosis and then be immediately thrown into making treatment decisions. 

It is in your self-interest to get educated as quickly as possible because empowered CLL patients live longer. Rather than consult Dr. Google, join HealthTree University. We’ve built a comprehensive curriculum in HealthTree University to make getting up-to-speed on CLL easy. Start with the CLL Basics classes and work your way up. The classes are taught by 13 CLL experts and today we have over 55 lectures in 9 courses (with more to come!). We want you to spend your precious clinic time asking your doctor questions about your care, not CLL basics. 

Learn from HealthTree University

5. Join the HealthTree for CLL Community to Learn More and Make CLL Friends

The HealthTree for Chronic Lymphocytic Leukemia program consists of the Podcast, Round Tables, Chapters and Events, and News programs. Here are some actions and steps you can take to get involved in this amazing Community: 

• Listen to HealthTree Podcast for CLL Episodes and hear 1:1 interviews with CLL experts 
• Join a HealthTree Community for CLL webinar that interests you and connect with others through events
• Join our social media group called HealthTree Connect
• Join our newsletter to read weekly articles and get familiar with CLL terminology, it's a whole new language! 

And as always, reach out to us at support@healthtree.org if you need more help. We’re here for you! 

Best Wishes, 

Jenny Ahlstrom, Founder of the HealthTree Foundation