scifiknitter

Feet on the sidewalk I feel kinda sick Hands out front I need a white stick Blurred in the morning Bruised at night Falling in the darkness Could've been a fight My blind life I can’t see the road I can’t see the light  - My Blind Life by Chris Dreja, sung by The Yardbirds Those lyrics are exaggerated, but I am going blind. Thanks to rociletinib, the experimental drug I took for eight months, I have rapid onset cataracts. From Wikipedia   Fortunately, this problem can be pretty easily fixed. Massachusetts General Hospital sent all of its patients who took rociletinib and developed cataracts to a specialist from Tufts University, but we are lucky to have a very skilled eye surgeon locally. He has scheduled me for surgery as early as possible; I get my right eye fixed on July 26, and my left eye fixed on August 9. It’s a fascinating experience. The first sign was in late April, when my eyeglasses no longer corrected for distance vision....

During a clinical trial clinic visit in January, my trial coordinator at Roswell Park Cancer Institute asked me if I would be interested in speaking before the FDA’s Oncologic Drug Advisory Committee about my experience as a patient taking the experimental drug rociletinib. Clovis Oncology, the company that makes and is testing the drug, was hoping to receive accelerated approval to start being able to sell this drug on the market, and a hearing scheduled for Tuesday, April 12 before this important advisory committee was key. The company was looking for patients to speak about their experience with the drug.  I immediately said yes. Such opportunities are rare, and it’s exciting to have an opportunity to be part of the important process of drug approval beyond taking a drug as an experimental subject. As a bonus, the hearing would be held in Silver Spring, MD, near where our daughter lives, and I would get to see her and her husband. In February, I talked with an executive...

If there are demerit points for bloggers, I’ve surely earned quite a few by going through a clinical trial from entrance to exit without blogging about the experience at all. I will do my best to make up for this omission of potentially useful information with a synopsis of my experience. If you have decided that a clinical trial might be your best next option, the first step is finding a clinical trial for which you match the profile of a qualified participant and that is at a logistically possible location. When my search for a clinical trial began in earnest in March 2015, I knew that there were two possible drugs that might be my best second line of treatment. One drug, AZD9291, had closed its trials and was moving towards FDA approval. The second drug, CO-1686, also called rociletinib, had an open trial at Roswell Park Cancer Institute in Buffalo, NY. I met the initial qualifications and I have family in Rochester, just an hour and a half from Roswell. So, game on! How do...