“The hematologist suggested treating me with 2-CDA because of the good results with other patients. So I was treated with 2-CDA 5 days subcutaneous injections. I also was treated with Valtrex and Batrimel. My liver function deteriorated severely so they quit the Bactrimel. I also had a skin rash and yellow eyes. The liver function only recovered after 2 months. I had fevers for more than 4 weeks, often 104F. I stayed in the hospital for 5 weeks in total. After 4 weeks, my blood did not respond at all so the hematologist took a bone marrow. It was 95% infiltrated with HCL and all fiber. I was treated then with Rituximab for 6 weeks. In the second week, my platelets started to climb and very soon the other blood counts went to normal, except for the B cells. The result was a complete remission (CR). It was a rough ride for my family and I. The hematologist sent me to a psychologist, which was very helpful for me.”

“We discussed with the doctor about cladribine treatment and whether I would get it done in the hospital or in the office. We decided to have it done in the office. The doctor gave me 5 days (2 hours a day) of cladribine and the first four days were great, no side-effects at all. But on the fifth day, I came home right after the treatment and immediately threw up. I had a fever and was told by the doctor’s office to go to the emergency room. My white blood cells were very low as well as my red cells and platelets. After that, I was in and out of the hospital with fevers and blood transfusions. They weren’t able to determine whether the fevers were from an infection or neutropenia.”

“I was given a 5-day course of chemotherapy in the form of 4 injections a day in my stomach. Unfortunately I developed an infection at the end of the treatment and ended up in hospital for approximately 2 weeks whilst they tried to find and treat the infection. This time was extremely stressful as I didn’t think they were going to be able to treat the infection; nothing they tried worked. I was consistently on drips receiving 2 blood tests a day. This condition is not good for someone who doesn’t like needles. Fortunately after about 10 days I began to respond to the treatment. The experience was pretty scary and unpleasant.”

“My oncologist described two possible medicines for treatment: Cladribine and Pentostatin. He outlined the treatment schedules and other details for both. I first tried Pentostatin. I thought that the treatment regimen - once every two weeks for four months - would be easier on my body. However, I had an allergic reaction to the second infusion and ended up in the hospital with neutropenia for three days. About two weeks after I was released from the hospital, I had a treatment with Cladribine - once a day for five consecutive days. I had virtually no side effects - only slightly tired and an odd pinprick feeling, like insect bites, on my skin, all of which went away in a few days.”

“Cladribine was the treatment used. I very much trusted the doctor who treated me. I also had daily neutropen injections. It all happened very fast, and in my case, I wanted it dealt with immediately since I had a family depending on me. I tolerated the chemo very well, some nausea. It was the aftermath that was difficult. When I returned home, I was admitted to the hospital after having several more blood transfusions, and spiking high fevers. The neutropen injections were very difficult for me as they caused acute bone pain.”

“We met with a hematology oncologist. He recommended treatment with Cladribine followed by Rituximab. We discussed Pentostatin, but he thought my health (generally good except for numerous squamous and basal skin cancers) and age were good enough to tolerate Cladribine. I received Cladribine via a portable pump through a PICC line for 7 days straight. I received 4 weekly doses of Rituximab via IV. I had only minimal side effects from the Cladribine-fatigue, very frequent urination, minor nausea (addressed with meds from the doctor). I had no side effects from Rituximab during or after any of the treatments. One side effect after the treatments was a skin rash on my shoulders and upper arms. I responded well to the treatment and had a bone marrow, blood work and physical exam which indicated no residual disease and complete remission. My recommendation to other patients: I would find a center of excellence or a major teaching hospital where the oncology staff is familiar with this disease and the latest treatments.”

“I received five consecutive daily treatments of Cladribine. Going in, I had experienced no prior symptoms, with the exception of the enlarged spleen. Prior to, during and after the treatments, I experienced no direct effects, side effects or residual symptoms. At times while being treated, I felt guilty about this, as others receiving treatments alongside me were in obvious discomfort for their conditions - or worse. I became humble very quickly and learned to appreciate how well I was feeling. My doctor said that Cladribine only was the most prudent treatment for my condition and that additional chemo steps like weekly Rituximab would be unnecessary for me. I have had several follow-up visits. With my platelet, red cell and white cell counts back in the normal range, and my spleen reduced by 30%, my doctor said he considered me to be in ‘remission.’ Now he will see me every six months.”

“I decided to do a clinical trial with vemurafenib and obinutuzumab. I developed a really bad rash and the vemurafenib dose was reduced greatly. I never lost my appetite or hair. It was not a bad experience except for the rash.”

“After my diagnosis, my hematologist shared with me information on the standard treatment options for hairy cell leukemia. He had treated about 10 patients with hairy cell at that time, so he had some experience. He provided me with some brochures that described the disease and had information about cladribine, pentostatin, and interferon. We went with cladribine and used the 5 day method, 2 hours per day. I tolerated the cladribine very well. No side effects to speak of. I would take a nap when I got home after treatment and keep an eye on my temperature. I never got up over 100 degrees. I stayed inside for about a month while my counts recovered, just going out for lab tests and doctor visits. Fortunately, I mostly work from home, so I didn’t have any headaches trying to keep up with my work while undergoing treatment and recovering.”

“After meeting several times with my oncologist, I shared the lab and bone marrow biopsy report with a few other doctors to get their opinions on my treatment plan. My oncologist agreed with their recommendation that I receive a 5-day course of cladribine only as initial treatment. All three doctors agreed that my blood levels were at a point where treatment was recommended rather than holding off. The treatment process went well until about the fourth or fifth day when I started to develop a full-body rash, periods of confusion that a nurse said was chem brain (I could not even give the nurse the name of my wife, who was at my side), and a flare of my Crohn’s disease. So a planned five-day hospitalization turned into a 17-day hospital ordeal. The treatment was followed up with more lab work and another bone marrow biopsy. I was then told that I achieved complete remission.”