Kirby Stone's Personal Profile
A Possible Trial (early 2004)
We have friends in Tucson, Arizona, who have a home there. I called the Arizona Cancer Center (ACC) at Tucson, a center of excellence for MDS. We were planning to visit Tucson in mid-February 2004 and arranged a meeting with Dr. Mahadevan, the director of MDS research at ACC. On February 16, we met with Dr. Mahadevan and his research nurses. He was concerned that my MDS could "blast off" quickly since it was already in the excess blast stage. One of the complicating factors was the fact that as one of Jehovah's Witnesses, I do not take blood transfusions of any kind; therefore strong chemotherapy couldn't be tolerated. Dr. Mahadevan thought they could treat me and suggested we apply to enter a trial at ACC.
We returned home to Cincinnati and researched other options, calling several doctors, hospitals, etc., but found no other trials that were open. Revlimid was in clinical trials but no trials were open and "compassionate use" from the manufacturer, Celgene, was not an option.
Nancy and I decided to travel to Tucson and try to enter the trial using Avastin. We arranged to stay in Tucson as long as needed.
On March 1, 2004, a BMB was performed at ACC. The results were back on March 4 and showed the blasts at 12.5%. The results were of concern to us but ACC did not seem very concerned. On March 19, we were called by ACC and informed that I would not qualify for the trial. It seems the BMB slides had been sent to Stanford University and the analysis there was that the blasts were 18-19% and this was too close to AML for me to qualify for the trial. Since Stanford University controlled the trial we had no recourse. We were told that we should return to our home in Cincinnati to be near our support systems, since in their opinion I had three to four months to live. A wonderful nurse practitioner at ACC had worked with us and suggested we could try Thalidomide at 100mg/day, or low-dose Ara-C, after returning to Ohio. She has been a wonderful encouragement to us over all the years.
The return trip from Tucson to Cincinnati was a sad and difficult journey. We had no real hope at the moment and the loss of a chance at the clinical trial left us devastated. We had not been able to find any trial or treatment anywhere else.
On a side note, Avastin did not prove to be effective on MDS patients so my rejection from the trial at the University of Arizona actually proved to be a blessing, as will be noted on my further treatment successes.