tidbits header CLL Global logo .

Bits and Pieces from the CLL Global Community   




More About Us


Tidbits Archives


If you have recently been diagnosed with CLL, you probably have questions. 


Information about CLL


What we are doing to defeat CLL






Find us on Facebook

 Join our Cause




Find us on Facebook



Jeff Folloder: My Journey with CLL
Jeff Folloder: My Journey with CLL


Living Well with CLL, 20 Years Later
Harvey Bongers: Living Well with CLL, 20 Years Later


New, Less Toxic Therapies for CLL
Drs. Januario Castro (UCSD) & Michael Keating (MDACC)
 New, Less Toxic Therapies for CLL


Expert Perspective: Exploring the Latest CLL Treatments
Dr. Januario Castro (UCSD)
Expert Perspective: Exploring the Latest CLL Treatments


donate button  


Is there something specific you want to read and learn about? 


Let us know if you have any comments or suggestions for improvement.


You are the reason CLL Global exists, and we want to hear from you.





March 2014


Dear  , 




It is officially Spring (or so they say). Spring promises to be a busy time for CLL Global. We have a patient forum coming up in Tampa April 12. See more about the forum below. In addition, video content from the February forum in Houston is being released. To the left, you will find five videos from the forum. Below, you will find the personal stories of Harvey Bongers, a long-term CLL survivor, and Jeff Folloder, CLL survivor and cancer community advocate. Their stories provide inspiration to all of us.

Personal Journeys with the Disease

Harvey Bongers, MD Anderson patient and two-time cancer survivor, recently shared insights on how he coped with his CLL diagnosis and living with the disease for over twenty years.


Bongers, a Lutheran minister, was diagnosed with CLL in 1991, after receiving a testicular cancer diagnosis fifteen years earlier.  One of the best ways he found to cope with the news was to talk with his peers, hospital chaplains, and other individuals. He developed his personal support group. Bongers emphasized that his ability to stay positive was based on having people around him to encourage him. He pointed to his resilient nature, which ultimately helped him through the diagnosis and treatment.


Bongers took time to learn about the disease, found a doctor that he trusted and could talk to, and then he just simply moved on from the diagnosis. Mr. Bongers' major advice to patients would be to live life as normally as possible and live as though there was no diagnosis. His "words of wisdom" for patients is to remember that every patient story is different, and you cannot expect what one person experiences is what you will experience.


Jeff Folloder, another MD Anderson patient and CLL survivor, focuses his efforts on volunteering with the cancer community. Folloder considered going into remission a gift and looked for a way to give back. He is an active volunteer with CanCare, a network of trained volunteers who provide emotional support to others facing cancer.


When asked what advice he gives to recently diagnosed patients, Folloder replies "to breathe".  Often times, there is so much going on and so many decisions to make that patients forget to simply breathe. Folloder described his diagnosis as if "he was hit with a baseball bat." It was not until he realized he had options that he truly felt at peace with the diagnosis. He recommends being aware that you have treatment options, serving as your own patient advocate, and asking questions until you fully understand. Through volunteering, Folloder has connected with other cancer survivors in a life-altering way and had the opportunity to share his experiences as a CLL survivor.


Understanding the New World of CLL: What it Means for You.


On Saturday, April 12, 2014, there will be a free interactive forum for CLL patients at Moffitt Cancer Center in Tampa, Florida.  This is our second forum with Patient Power. Our goal is help the CLL community stay informed about the ongoing developments in CLL research.


A panel of CLL experts and patient advocates will explore the latest CLL treatment and research news, effective tools for treatment, strategies for dealing with CLL complications and treatment side effects, and tips for communicating with your healthcare team and family members. There will also be inspiring stories from patients that are living well with CLL.


Dr. Javier Pinilla-Ibarz from Moffitt and Dr. Willima Wierda from MD Anderson will serve as faculty for this forum. Additionally, there will be an oncology nurse practitioner and social worker, as well as patient advocates. Local advocacy groups will be on hand to offer support, provide information on how to access a wide range of resources, and help you connect with the CLL community. 


Registration for the event is free but required. Join us for this free live event produced by Patient Power and CLL Global Research Foundation. To register, click here.


If you cannot make it to Tampa, don't worry. Patient Power and CLL Global will post videos from the event.  


Thanks for reading this month's Tidbits. More video clips to come next month. Until then, be well.


CLL Global Research Foundation