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Patient Advice – Paying it Forward

In science and medicine, information is constantly changing and may become out-of-date as new data emerge. All articles and interviews are informational only, should never be considered medical advice, and should never be acted on without review with your health care team.

CLL Society asked CLL/SLL patients what advice they have from their own personal journey that they would like to share with people recently diagnosed with CLL.

We received great advice and we are sharing it with you! Please check out this page each week as we release short videos of patient advocates sharing what they wish they had known or prepared for so you will be ready too.

Jillian York

Photo credit: Sina Giencke

“I was able to talk with a [CLL] specialist and find that he had a lot of the answers to my questions and he was able to ease my mind.”

Mindy Farber

“You have to stay optimistic, you have to have a good presence of mind, stay calm and collected.Stay positive and keep on with your other activities.”

Doreen Zetterlund

“My advice is to carefully consider if a clinical trial is right for you when the time comes to treat your CLL/SLL. I’m so glad that I chose the clinical trial route for my frontline treatment.”

Jolianne Jones

“Although there is diversity in the diagnosis and treatments [support group members are] receiving, there are shared experiences. These experiences helped me to become more confident as a self-advocate, receive support and encouragement, and become more informed about treatment options and latest research.”

Tammi Garrett

“I really wish I had not been scared to push further or go for a second opinion sooner…Test Before Treat is incredibly important. It will help determine what treatment will be best and what should avoid.”

Bruce Wright

“The term I use is ‘own it’. Find out everything you can because [besides] the title of the disease, we are all different with our disease… If [your doctor] doesn’t explain [your disease status], I suggest you find another doctor. It is time to spoil yourself; it’s time for you to find a specialist who will take care of you.”

David Klausmeyer

“I encourage you, when you go to a doctor be prepared. Take your notes and don’t get out of that chair until all your questions are answered to your satisfaction and to your ability to understand the answers.”

Deborah Dana

“First and foremost you need to get hooked with a CLL expert who can properly assess what flavor of CLL you have. Many people don’t ever need treatment or if they do there’s a lot of new treatments out there. Things have radically changed in the last two years, there are many, many treatment options.”

Nancy O’Brien Simpson

“Do all the research you can. Become your own best advocate.”

Pete Hyde

“Speak openly about your leukemia. You’d be surprised at the number of people around you who will gather around you to support you. Always have an accountability partner…Remember the big picture, you are not leukemia.”

Please find a compilation video of their advice below.

Thank you to all our Patient Advocates who have participated.

This program is being made possible by sponsorship from AbbVie and Genentech.