HCL Meeting 2010 Despite having extremely hypocellular bone mar-
row and suppressed CD4 counts, my follow-up bone marrow biopsy looked good. I continued to see my hematologist regularly and tried to take better care of myself. However, less than 3 years after my treatment with cladribine, I relapsed. Again, I did not feel sick. Thoughmy blood counts were falling, the percentage of hairy cells found in the bone marrow was small. I spent the next several months doing more research and consulting with more HCL specialists. Having very hypocellular bone marrow and being CD25 negative, I received more conflicting opinions on treatment options: Rituxan for 4 weeks? The BL22 clinical trial at NCI? Cladribine again? Interferon? Rituxan for 8 weeks? Again, working with my hematologist and follow-
ing my gut feeling, I chose the 8 weeks of Rituxan protocol. While I knew I could participate in a clinical trial, I elected to be treated at home by my hematologist because I did not want to travel for treatment. Other than having suppressed B cells for several years following the Rituxan treatment, and a cardiac arrhythmia that I feel may have been related to Rituxan, it was the best decision I ever made. Eight years later my blood counts are perfectly normal. Since the time of my diagnosis, I have been
involved with the Hairy Cell Leukemia Research Foundation. The Foundation is an all-volunteer organization formed more than 25 years ago to raise funds for HCL research and to provide a network of support for patients and their families from around the world. Through the Hairy Cell Leukemia Research
Foundation, I often hear other patients’ concerns in dealing with hairy cell leukemia. While each patient’s situation is unique, based upon my experience and conversations with other patients, I believe that all patients with HCL have similar concerns:
. Is the treatment my doctor recommended the best treatment?
. My doctor has never treated anyone with hairy cell leukemia; who are the best HCL doctors?
. What causes hairy cell leukemia? . Is hairy cell leukemia hereditary? . What are the side effects of the treatment? . Are there any long-term side effects of the treatment?
. When should I have a follow-up bone marrow biopsy and computed tomography (CT) scan?
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. Should I begin treatment now, or wait until my blood counts get worse?
. What are the chances that my hairy cell leukemia will return?
. Can I prevent a relapse by taking vitamins? . Am I going to die from hairy cell leukemia?
After listening to the speakers at the symposium discuss their research, I am confident that one day we will have answers to all of these questions. When I was diagnosed in 1998, purine nucleoside
analogs were the latest and greatest and seemed to work for most patients. However, follow-up studies showed that some patients do not respond to these therapies and many eventually relapse after their initial treatment [1]. While I am excited about the future of hairy cell leukemia research, further research into the biology of HCL and a better understanding of minimal residual disease is neces- sary to find a cure for hairy cell leukemia. In addition, since hairy cell leukemia is a rare disease and most patients are not treated as part of a clinical trial, it is important that statistical data (such as age, gender, occupation, treatments, ethnicity, etc.) be gathered to allow researchers to find common characteristics among patients with HCL. Finally, creation of a tissue bank may help researchers develop even more effective treatments with minimal side effects for hairy cell leukemia. Despite all the advances in the treatment of hairy
cell leukemia during the past 50 years, the research- ers who have dedicated their lives to finding a cure for HCL are not satisfied. By forming the Hairy Cell Leukemia Consortium, they are continuing their quest for a cure. These researchers will work together to educate doctors around the world about HCL, encourage young doctors and scientists to go into HCL research, and discover the causes of HCL so that one day hairy cell leukemia will be completely eradicated.
Potential conflict of interest: A disclosure form provided by the author is available with the full text of this article at
www.informahealthcare.com/lal.
References
1. Grever MR. How I treat hairy cell leukemia. Blood 2010;115:21–28.
2. Holzman D. Has success spoiled hairy cell leukemia research? Key questions go unanswered, despite big gains. J Natl Cancer Inst 2009;101:370–373.
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