Stories and Testimonials

There are some things that only one patient can tell another. This is where you will find patients and caregivers sharing their most personal stories and their best advice about how they have survived their illness.

FEATURE

One Patient's Powerful Story

My friend and fellow CLL patient and long-time member of our local Orange County CLL Support Group, Terry Evans shares his real-life experience with being in clinical trials. Terry offers practical advice about why and how to choose a clinical trial.

Thank you, Terry.

Terry is giving us the personal side of the equipoise issue raised in clinical trial designs.

Please read Dr. Susan O’Brien’s blunt ASCO 2013 post citing the unreasonableness and tragedy of disallowing crossovers in certain clinical trials.

We are happy to say that since the scare and stress that Terry faced in the RESONATE trial, today, crossovers are becoming the norm in cancer trials.

ADDITIONAL READING

Margaret wrote this heart-wrenchingly honest and lucid account of her young husband’s passing soon after his chronic lymphocytic leukemia (CLL) went bad and transformed to Richter’s Syndrome or Transformation. Not everyone who develops Richter’s has such a grim story, but sadly too many still do.
We lost a CLL friend, advocate, and scholar to COVID-19. I am heartbroken and not sure where to start my personal tribute. Tom Henry was a special person, active in multiple forums, extraordinarily generous in sharing his wisdom as a pharmacist, faith, and hard-earned experience as a CLL patient.
These are indeed uncharted waters. There is the obvious risk of ventilators and death with everyone we encounter a possible unwitting carrier of the virus. For those of us who are both older and immunocompromised, there is a psychological element to all this that is underestimated.