Smart Patients Get Smart Care™

The World’s Leading Authority for Chronic Lymphocytic Leukemia Patients

What CLL Patients Say About
Test Before Treat™

Whatever the stage of your journey with CLL, chances are good that your fellow CLL Society readers have walked or are walking that very road. Through the generous sharing of their stories we can gain strength, courage and information.

Please read and act at all times as your own best advocate. 

Smart Patients Get Smart Care™.

Patient, Know Thyself Mark Hoffman is a long-time CLL patient advocate and facilitator of the CLL Society Patient & Caregiver Support Group in San Diego, CA. In this article from Cancer Health, Mark echoes the importance of the Test Before Treat™ campaign by sharing his story. When Mark was
(Expert Access & Test Before Treat™) This is just a brief note to tell you about the important impact you had on my treatment for CLL. Last November, through the Expert Access program sponsored by the CLL Society, you were kind enough to review my medical records and chat
When I was first diagnosed in April 2018, my WBC was at 55k, my local Hematologist performed the FISH test and found out I had 11Q with loss of ATM, they told me that only made a difference in the type of treatment I would need and I probably
Diagnosed Aug 2018 as a 54-year-old female, with SLL via node biopsy. CT showed extensive lymphadenopathy, very bulky disease, particularly in mesentery. Bloodwork all in normal range. Had BMB in spring 2019 for purposes of FISH. Had been experiencing increasing fatigue and discomfort in gut. Pathologist decided not to
I question if my doctor should have genetic tested me before treating me with Bendamustine in December 2013 and if this was the cause of my developing theTP53 mutation after my initial diagnosis of 13q in 2008. After the Bendamustine treatments, I started on Ibrutinib in January 2014. Gary
I was diagnosed accidentally in 2001 during investigation of a single swollen cervical node. My community oncologist at Maine Medical Center recommended chemo immediately. A comprehensive second opinion from Dana Farber led to 15 years of asymptomatic watch and wait. In 2015 a dramatic appearance of symptoms over 3
August 2019 I was diagnosed with CLL in June of 2014. Like most CLL patients, I was originally placed on watch and wait, but my cancer progressed aggressively. After only 17 months, my WBC had exploded higher (it peaked at 350,000 cells per cubic millimeter of blood, up from
At the time of my initial diagnosis — and not because I knew any better, because I knew nothing at all including my not-yet-announced diagnosis – my hematologist ran both a flow cytometry (to diagnose my disease) and a FISH analysis (to explore the genetics of my CLL). Though
I was diagnosed July of 2018 by a local oncologist, CLL stage 4.  He wanted to treat me immediately with BR.  I asked him about trials because I did not want to do chemo and read about some superior non- chemo meds. He said he would check, and afterwards, said there
I was diagnosed February 6, 2018. I began immediate treatment for B-symptoms (have had them since 2008) – completed 6 of ten rounds Rituxan (had to stop due to Rituxan-induced colitis).  My oncologist failed to determine mutated/unmutated status – she was fired. I now see a CLL Specialist. Relapsed