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I am a 44-year-old female who was diagnosed with hairy cell leukemia last summer. When I pulled up this site and read the stories written by patients who had this same disease, it made me quite nervous. I am here to tell you that of the five diseases (hairy cell leukemia, myelofibrosis, aleukemic leukemia, lymphoma or aplastic anemia) they thought I had, I feel very grateful to have this type of cancer.
I had chronic fatigue for approximately one year and blood tests which showed low white and red counts. They were uncertain what the problem was and ran several series of blood tests. A bone marrow was finally obtained and they had difficulty aspirating the marrow tissue. They also found my spleen to be enlarged. My doctor consulted with other doctors and they said this was typical of hairy cell leukemia. With the test results they found that I had hairy cell leukemia but also that I was not producing new blood cells (hypocellular hairy cell leukemia). Let me tell you, I was scared to death at the sound of leukemia but my story was almost too easy. My spleen was slightly enlarged but they decided not to remove it. They decided I needed treatment but worried about my blood counts not coming back up and considered using injections weekly for up to a year. They found my blood counts were high enough that they felt it was safe to use the chemotherapy and avoid the injections – and if my counts weren’t going up, they would use Neupogen and Procrit.
They started Cladribine (a seven day continuous IV dose chemotherapy agent. ) It didn’t make me ill or cause me to lose my hair. I was a little light-headed but that was about all. My white count dropped to 700 and they started me on Neupogen injections for 3 to 4 days. My white count started to come up. They also gave me one dose of Procrit and my red counts started to come up. They told me to wait a week and see if blood counts dropped again, but they didn’t – they continued to rise. They told it would be 6 to 12 months for my counts to be normal, but one month after treatment, my counts were significantly higher. The treatment was done the first of November, and now in April, my counts continue to rise with no further treatment and he told me they were essentially normal. My blood tests now only need to be done every three months instead of every 6 weeks.
I just wanted people to know that this disease did not affect me as badly as it has some of the others. My physician said I probably still have some hairy cells in my blood, but if I do require further treatment, it would be the same treatment and that he has never had to treat anyone more than twice. I feel very blessed to to live in a time when good treatment and good physicians are available to treat this disease.
God Bless all of you with your treatments. God does hear and answer prayers!
Pam Anderson ( PamJAnderson@earthlink.net )