CLL Support Association
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Importance of Clinical Trials & knowledge

Greeting to All,

Today 5 years ago I received my first 420mg dose of PCI-32765 at the James Cancer Hospital at OSU under the care of Dr. John Byrd. The Trial was a Phase 1b Clinical Trial indicating it was one of the first Trials to use this experimental drug on human patients with CLL for which the drug was designed. PCI-32765 is now familiar to most of you as Ibrutinib or Imbruvica.

Previously, I had been against risking a Phase 1 Trial for any drug. When I failed two of the most widely used standard TX drugs for CLL (Fludarabine & Rituxan) because of life threatening reactions I decided I needed a re-evaluation of my Clinical Trial Phase 1 fears. Make no mistake, because it worked for me as I am now quite healthy though not cured, my good fortune does not mean my journey is a guaranteed template for everyone. The crucial message should be that until 5 years ago the options for less toxic and less effective drugs was poor. The chance that you will benefit and not be permanently damaged by participating in a Clinical Trial today is much greater than ever before.

Getting the most from the Clinical Trial option depends on knowledgeable physician guidance and your own abilities to intelligently explore the variety of choices and matching those choices with what you know about your own CLL. There will be many unknowns that may frustrate the process but I truly believe that the risks overall are in decline as knowledge of CLL biology grows exponentially. Give yourself the “Casino’s Edge” by educating yourself through the many great resources at your fingertips through the Internet.

My journey has been an overwhelming success while not devoid from potentially fatal or crippling missteps along the way. I learned enough at one fork in my path to question a CLL ignorant but highly educated local Heme/Onc on a treatment recommendation I was skeptical of. I employed some wisdom 2 years previously to have made a consulting relationship with a CLL specialist (Dr. John Byrd) at OSU and sought his guidance at this troubling time in my standard TX failure. My hesitation in challenging a medical authority based on what I had made an effort learn about CLL and the level of knowledge of Dr. Byrd and the options for non standard treatments he offered me led me to PCI-32765 (Ibrutinib).

As in my case when I sought help from Dr. Byrd, you might be offered several treatment options like I was. While I won’t exclude a certain element of luck in my choice of Ibrutinib, I had a lay knowledge of all drugs that were offered and I had no hesitation in picking Ibrutinib. I credit my success in no small part to the excellent personalized care I got from Dr. Byrd and the James staff. Ibrutinib was not a walk in the park in the first 9 months but the guidance I received and the willingness of Dr. Byrd to work with me in decision making was key to success.

With the “moonshot” govt. effort I hope we will all continue to report good experiences and better outcomes than ever before.

WWW - DX 2006 Failed FR & HDRTX with Kidney failure 2009-2010 Ibrutinib 2011

4 Replies

I send my thanks for your part in the trial!




Thank you and all who traveled this miserable road before me. I'm very glad you are feeling well.


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A big thanks to all who take part in these trials.



Thank you threeW's

Your experience confirms the value of knowledge and the ability to advocate for oneself, and the importance of finding a cll expert one can work with and rely on. Without clinical trials few new drugs will be available to us when we need treatment.

Thank you for sharing, good luck for the future.


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