Leukemia & Lymphoma, June 2011; 52(S2): 108–109
A patient’s point of view
EARL J. STONE Hairy Cell Leukemia Research Foundation, Inc., Deerfield, IL, USA.
Abstract Patients have many concerns when diagnosed with hairy cell leukemia (HCL). Their ultimate concern is whether they will be cured. Although purine nucleoside analogs have been very effective in the treatment of HCL, some patients do not respond to these therapies and many relapse after initial treatment. From a patient’s point of view, it is gratifying to know that researchers continue their efforts to develop more effective treatments with minimal side effects. By forming the Hairy Cell Leukemia Consortium, these researchers seek to educate patients and doctors around the world and continue their quest for a cure for hairy cell leukemia.
Keywords: hairy cell leukemia, survivor
As President of the Hairy Cell Leukemia Research Foundation and a hairy cell survivor, I was invited to speak from the patient’s point of view at the 2010 international hairy cell leukemia symposium on the Treatment of Hairy Cell Leukemia in its Second Half-Century. I want to thank the Hairy Cell Leukemia Consortium and the National Cancer Institute for giving me the opportunity to speak to an esteemed group of researchers on behalf of myself and other survivors of hairy cell leukemia. In 1998, I was 44 years old and an avid runner
when a routine blood test showed that my platelet count was low. After ruling out other possible diseases, my hematologist did a bone marrow biopsy. Several days later, my hematologist called. He said, ‘I have good news and bad news. The bad news is that you have leukemia. The good news is that you have hairy cell leukemia.’ I had never felt sick, and all of a sudden I was being told I was sick—and it was cancer. Once the initial shock wore off, I wanted to learn as
much as I could about hairy cell leukemia (HCL). I called the National Cancer Institute, Leukemia & Lymphoma Society, American Cancer Society, and the Hairy Cell Leukemia Research Foundation to request information on HCL. At my local hospital medical library, I read hematology textbooks and
every published article I could find on HCL. All this information led me to three doctors, whose names and institutions I repeatedly found in the research materials. Consulting with all three of these HCL specialists,
as well as their pathologists, gave me more good news and bad news. The good news was that I had hairy cell leukemia. The bad news was that while each doctor recommended I be treated with cladribine (2- CdA), each had a different opinion as to when I should begin treatment. Some recommended I be treated immediately; others thought I should not start treatment until my blood counts dropped further. While all the doctors had good reasons for their recommendations, after numerous discussions with my hematologist and my wife, I decided to start cladribine while my blood counts were still good and I was feeling strong. I hoped I would weather the side effects of cladribine better than if I waited until my counts fell lower. Plus, I felt that I just needed to do something—for me, watching and waiting just was not going to work. This was a good choice for me. I took care of myself, did what I was capable of doing, went for my blood tests, and got through the treatment. My counts recovered almost exactly as they did for the patients in the 2-CdA clinical trials I read about in my research.
Correspondence: Earl J. Stone, President, Hairy Cell Leukemia Research Foundation, Inc., Deerfield, IL, USA. E-mail:
hairycellleukemia@hotmail.com
ISSN 1042-8194 print/ISSN 1029-2403 online 2011 Informa UK, Ltd. DOI: 10.3109/10428194.2011.573035
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