For patients newly diagnosed or their caregivers, I was a 63 year old patient DX (Diagnosed) in 2006 with no academic background and cannot give medical advice. I have, however, made an effort to study CLL/SLL and have been around the block with failed standard therapies which damaged my kidneys and led me to participate in a Phase I-b Clinical Trial for a drug called PCI-32765 renamed Ibrutinib or Imbruvica. This Clinical Trial likely saved my life and I am happy to report that I have achieved a CR (Complete Response) remission in the blood and lymphnodes. I am currently scheduled for my 12th CT scan session since DX with 9 of those sessions in a three year period of my Ibrutinib Clinical Trial.
This effort will be a series of postings, hopefully thought provoking to better inform you on your individual journey, whether you be a new comer to CLL/SLL or a seasoned veteran. My reason for writing about CT scanning comes from a culmination of events from reading patient posts, attendance of blood cancer Conferences, the younger CLL patient population, the variety of CT scanner technologies we will likely encounter, the complexity of understanding the amount of radiation exposure related to potential harm, my own experiences with 12 sessions of CT ionizing radiation and the explosion of new therapeutic agents all demanding Clinical Trials accompanied by multiple CT scans.
After exploring the subject of CT scanning I realized early on that the subject would be difficult, controversial and prone to misunderstandings. In the most simple terms I want YOU, as a patient or caregiver to feel the need to be an integral participant in the decision process of when to allow a CT scan. You need to be educated to be an effective advocate. Here's hoping everyone will follow along or bear with me, for it will take patience and patients with a will and perseverance to change the medical culture and its frequent CT use with the older CT scanners.