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Hairy cell leukemia: What are the treatment options?
Blood Cancers & Disorders | Last Active: Mar 27, 2024 | Replies (17)Comment receiving replies
I did join the fb group a few days ago. After researching Hcl and reading med papers I was fairly certain that chemo is not the only option. I want to avoid chemo if at all possible. During the appointment with oncologist I asked about alternative treatments. He obviously didn’t like that question. After talking to him a nurse came in and tried to turn the fear meter to 11. She also took it upon herself to schedule appointments starting in 3 days for chemo and the following weekly treatments. I was/am po’d that they wouldn’t give a person time to digest everything before making a decision about treatment.
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Yeah, that should be a red flag when an oncologist bristles at questions about treatment options. I'm not saying there is a conflict of interest, but they do bring in a huge amount of money to a cancer center by administering chemo. I do have peripheral neuropathy as a result of the chemo, which rarely happens with only 5 days of it. Timing of treatment really should be based on how you feel along with the CBC numbers (hemoglobin < 11g/dL, platelets < 100,000/mcL, absolute neutrophil count < 1000/mcL). Dr. Kreitman is very responsive to inquiries and might be able to help in your decision, kreitmar@mail.nih.gov. With your research, you may be aware that it will be very helpful for him to know if you have HCL (BRAF +) or HCL variant (BRAF -) which you would learn from your bone marrow biopsy.