June 2010

Good morning, I was diagnosed with Hairy Cell Leukemia in September 2008. However I do not need treatments because I currently have a stable disease. When I do receive Cladribine, how long should I stay away from a normal life (work, sports)?

Generally treatment with Cladribine is recommended when PMN values are < 1000/mcl, or PLT are < 100000/mcl or Hb is < 10 g/dl or if you have symptomatic splenomegaly. From your statements, we assume that you do not have any of these signs/symptoms. If you will receive daily Cladribine (generally IV for 5-7 consecutive days), you will undergo a period of about 4 weeks (minimum) when your counts are too low for any work or sport activity and you will be at risk of opportunistic infections for about 6 months. During this period you may need medications to prevent infections or excessively low counts. However, this is a general view and can be different from patient to patient. The hematological center where you receive your treatment will need to help you with the details of your situation.

When will the bone marrow aspirate and biopsy return to normal after treatment?

In patients on treatment with 2 cda (Cladribine), the time to normal bone marrow may vary from 90 days to 270 days if the treatment is successful. On Pentostatin the time is approximately 120 days to 360 days.

However, more importantly for the patient, the time to normal counts is much shorter in both cases and can be as short as 50 days.

Approximately 6 years prior to my diagnosis of HCL I suffered from widespread pain and fatigue diagnosed as fibromyalgia and Chronic Fatigue Syndrome. When pancytopenia and multiple infections developed I was finally diagnosed with hairy cell leukemia and treated 2CDA and achieved a remission. I was hoping that the fibro and CFS would disappear after chemo. Unfortunately my pain and fatigue are worse since chemo and I am barely able to function. Is there an association between horrible pain/fibro/CFS and HCL? Please help.

The only thing noted with HCL is a percent of people will have autoimmune disease associated with the HCL which may not respond to treatment for the HCL. So the fibromyalgia could be related. It is unclear about the CFS. You may want to address this more with your current physician.

I was diagnosed with HCL about two months back and started treatment yesterday. I was given a dose of Rituximab and had some reactions - fever, shivering and vomitting. This afternoon the doc said my platelet has dropped to 8, and i may have tumor lypsis. If i understand this correctly, it means the Rituximab was effective in "killing" the hairy cells? I'll be given a blood transfusion later for my low platelets and Cladribine will start tomorrow. Given the reaction i had to Rituximab, would i have any reaction to Cladribine?

Your physician is in the best position to explain your side effects from Rituximab. Following the first intravenous dose of this agent, patients may develop a picture similar to what you describe (including fever, chills, and vomiting) related to the infusion. Your physician may have other evidence of tumor lysis, as this can also be seen with Rituximab. There is insufficient information in your note to comment on whether this was an infusional reaction or related to tumor lysis. It is still best to ask your physician as he will be most familiar with your case.

The side effects from Cladribine are more often related to lowering of the blood counts. However, patients can develop fever and nausea.

It is not clear what your platelet count was before the Rituximab. If the platelet count is 8,000, your platelet count will need to be carefully monitored during therapy. If you have any sign of bleeding, this needs to be reported to your physician immediately.

If you are responding to Cladribine, the platelet count should improve. It is important to be carefully followed by your physician, and to understand the side effects of treatment. If your physician has questions, there is a list of centers that have extensive experience in treating patients with this disease. These institutions are listed in our Centers of Excellence section of this website.

Cladribine - I will be hospitalized for a 7 day treatment, 24 hrs a day. Will I lose my hair?

While hair loss (alopecia) can occur, it is usually mild or absent altogether.

I have recently gone through my second cycle of Cladribine in Feb 2010, and my blood platelets and white count still remain low as to date. I just had a bone marrow biopsy this month, which shows I still have 25% HCL. My Oncologist would now like to put me through a treatment of Rituximab, (once a day for 4 weeks). He fills that from the results of the bone marrow test that this would be the best course to take. I have agreed to this treatment.

I would like to know where I may apply as a test subject for HA22 or BL22. I just want to be proactive in case I do not respond well to the Rituximab.

This is a very common question and very often if the patient waits longer, the normal blood counts improve and a repeat bone marrow shows less or sometimes even no HCL. Since it is relatively early after your last course of Cladribine, I would not jump to treatment unless there is evidence of the HCL burden getting worse. This can be assessed by high sensitivity flow cytometry and PCR, as well as soluble receptors, but it requires getting blood drawn at multiple points in time.

If you had gotten treated in Feb 2010 as part of the NIH's Cladribine-Rituximab trial, they would be doing those tests right now on you! There are other options if you do require more therapy so please feel free to contact Dr. Robert Kreitman, our Scientific Advisory Board Member at the NIH, for more information.

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