Submissions to “Patients’ Stories” cannot be verified for their accuracy. They do not necessarily represent validated medical research. The reader should understand that these stories represent only the opinions of the authors and not the Hairy Cell Leukemia Foundation.
Greetings to all My Hairy Cell Friends,
My name is Dave Brenneman and at age 59 I am a nine year survivor of Hairy Cell Leukemia. I was and am a physically active person who was raised on a farm and to this day I relish hard physical work around the family farm as opposed to all those reps in the gym. In late 1996 I thought this may all come to an end when I was told that my blood work was abnormal. Three months into testing I was told that I had a rare but treatable form of leukemia. It was an emotionally traumatic time for me and has been a roller coaster ride ever since. My first treatment with 2-CdA in March of 1997 proved successful for a 5 year remission until relapse in late 2001 followed by another treatment with 2-CdA in January of 2002 with relapse in early 2005. Positive attitude, family support and The Hairy Cell Research Foundation, along with knowing that there are a number of chemical and biological treatments which have been successful have helped me through the uncertain times. I have really never been “sick” during the whole battle with a disease which is still of questionable origin, but, fortunately has gotten the attention of dedicated medical professionals who believe this cancer can be understood and controlled.
One such Doctor is Robert Kreitman with the National Institute of Health (NIH) in Bethesda Maryland. He and his colleagues developed an Immunotoxin “Targeting” Therapy called BL22. As I began to follow the successful progress of this therapy in 2002, I wondered if I would ever need another treatment and could become a candidate for this treatment. This was in the back of my mind when my counts dropped substantially in early 2005 and on contacting NIH and going through the required preliminary evaluation I was invited to take part in the second trial of treatment with BL22 in September of this year, 2005.
I was apprehensive as my wife and I drove to Bethesda for my treatment. I guess it was primarily “fear of the unknown”. Also, we weren’t anticipating all that traffic. My fears were put to rest as the wonderful NIH staff put me through my paces with extensive preliminary testing. I thought the “blood letting” would never end. Also, one and one half hours in the “MRI Tube” was a real challenge. After many tense moments over a four day period I was deemed healthy enough for the treatment which included three infusions with BL22, one every other day. I tolerated the treatment well and although I ballooned up 25 pounds with fluid retention, I was comfortable and relieved that the “first” round was over. I emphasize the word “first” because there had been only one patient who had gotten a “full clinical remission” in the first round during the first trial.
It was by coincidence that I met that first round patient during a follow up visit to NIH, who, after nearly 5 years, is still in full clinical remission. I joked with him that I would be the second, because my counts were rebounding nicely and I was feeling good. I also met patients who were in their 5th and 6th round of the treatment and were also heading for remission. My counts continued to rebound into good ranges which I had not seen for years. Subsequent testing and time has revealed that I did respond with a “full clinical remission” and I am hoping for many more years of quality life, eventually as a retired gentleman farmer.
Yours in Remission,