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Bob (@rllarocca)

Hairy Cell Leukemia

Blood Cancers & Disorders | Last Active: Apr 10 10:13pm | Replies (39)

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Hi Bob, welcome to Connect.
Thank you for starting this discussion on hairy cell leukemia. I’m glad to hear that your body is responding with to cladribine. Any side effects?

Let me introduce you to a few members. @sian and @mamaitaly haven’t been on Mayo Clinic Connect for a while, but I hope they will return to share their experiences with you. I’d like to also tag @margarettassmer @ikampel2 and @lynnkay1956 on this conversation. While they don’t have the same type of leukemia, they also have experience with chemo and blood cancer. In the menatime, let’s keep the conversation going. That way others with hairy cell leukemia will be encouraged to join in.

You asked about the risk of secondary cancer as a result of HCL and/or treatments. I found a few articles referencing this. See this article describing the results of an NCI 2007 study http://bit.ly/2dAgp9l and this abstract from a 2010 study https://www.ncbi.nlm.nih.gov/pubmed/20001428 It’s important to remember that statistics refer to a population of patients and may not reflect your situation.

Bob, have you talked to your oncologist about your personal risk of a secondary cancer? What additional screening do you do to watch out for non-Hodgkin’s lymphoma or lung cancer or other secondary cancer?

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Replies to "Hi Bob, welcome to Connect. Thank you for starting this discussion on hairy cell leukemia. I'm..."

Hello Colleen,
Thank you for the references. I will discuss secondary cancers with my oncologist at my next appointment. As far as side effects of cladribine, it usually has minimal side effects. No nausea or hair loss. This time I broke out in an itchy rash which I do not remember having after the first course 4 years ago. It is just starting to abate now, just over a month since I left the hospital. I found some reports of a study a few years ago that said this was common for 57% of cladribine recipients. After the treatment my white cell count was critically low, so I received a neulasta shot which resulted in a dramatic improvement after only 2 weeks. This is the same as I experienced after the first course.