My story started with what was supposed to be a routine annual physical. I had delayed this physical my entire adult life until I was 42. My reason for completing the physical was to be pro-active with my health as I had no health concerns at the time and my wife was urging me to obtain the physical.
The blood work that was ordered for the physical exam showed that I was suffering from severe anemia. I had about half the hemoglobin that I should have as an adult male. I felt normal, so when the doctor left messages for me to call back, I still put that off for a couple of weeks. I finally called and went in where the doctor informed me of the problem and had me set up appointments with an E.N.T., gastroenterologist, and hematologist/oncologist. These doctors soon found out that I was not simply bleeding somewhere that I did not know about, but confirmed there was something else wrong but they did not know what that was. My hematologist tried infusing me with iron, but that also did not correct the anemia. More blood tests were done along with a CT and PET scan. These tests showed that I had a high infection somewhere in my body and a large mass in my abdomen. The next step was to have a biopsy, which ultimately resulted in the Castleman disease diagnosis in September 2012.
At this point my wife was really frightened, as one might imagine, but I remained calm because I still felt fine and just could not imagine anything serious was going on. My wife became very pro-active in finding the best care available once the diagnosis was made. She found Dr. Van Rhee in Little Rock, AR and the University of Arkansas for Medical Sciences (UAMS). An appointment with him was set up and on November 1st, he confirmed that I had idiopathic multicentric castleman disease (iMCD). He also confirmed that I had tumors throughout my body including my neck, groin, armpits and abdomen.
Dr. Van Rhee started me on Actemra and after about one year the activity of the tumors stopped and they began to shrink. There has only been one flare up where the tumors became active again. In 2014, I had spaced the infusions out a week further than prescribed due to living in Johannesburg, South Africa and they became active again. Dr. van Rhee helped to ensure that I corrected my treatments and I am again responding positively to the drug.
I feel extremely fortunate that the Actemra has been a successful treatment for me, especially since I am now aware of how this disease can affect others. I am proud that assisting the CDCN with providing my tissue and blood samples as well as medical history has been able to support the critical and important research for others. As a new warrior, I hope that my story will bring comfort to others with the disease that together we can defeat this disease.