Patient Stories: Diagnosis
“When and how were you first diagnosed with hairy cell leukemia?”
-
“I had recently lost 15 pounds intentionally. While lying on my back in a hotel room and feeling my ribs, I noticed a slight puffiness under my left rib cage. Same thing the next night. This didn't feel like a gastrointestinal issue, so I reported this to my primary care physician (PCP) at my annual checkup. My PCP requested that I make an appointment with my hematologist. After an ultrasound revealed an enlarged spleen (19 cm) and comprehensive blood tests, he called with the news. I had HCL and I would be scheduled for a week-long session receiving Cladribine treatments. My mother had passed of another form of leukemia, so I was understandably nervous until I could start researching my condition. In the month before my chemo started, I had joined the Hairy Cell Leukemia Foundation and had assembled a 3" binder of documents and resources to become my own "expert advocate." This knowledge would become my strength and confidence going forward.”
-
“I felt increasingly ill for 3 years with neutropenia, fatigue and severe joint and bone pain. I saw 10 private consultants - rheumatologists, hematologists, and orthopedics - they all missed it. Hairy cell leukemia wasn’t in my blood, just my bone marrow. It was found after I had an MRI on my arm and a large lesion was found. I was ignored for three years and feeling desperately ill by the time the HCL was found. I encourage other patients to do lots of research and find a center of excellence.”
-
“A year before my diagnosis, I had numerous pneumonias, gout, joint inflammation, sweating 3-4 liters per night, etc. Having been an olympic swimmer, I fought it, thinking, "I can get over this.” It was when I finally let myself get tested that the circus started. The doctor who saw the test results called me back urgently to the clinic. She had called an ambulance since my blood counts were so bad that they thought I may become septic. In 15 minutes, I was at the ER and the testing and early treatments started.”
“I was diagnosed with HCLv through flow cytometry. My rheumatologist was concerned because my lymphocytes had been elevated for 2 years. He thought I had developed either leukemia or lymphoma. I was referred to a hematologist and then had the blood work done. She told me I was likely fine and that she didn’t expect it to reveal anything negative, so I went to the follow-up appointment alone. That was a mistake! She told me that she was extremely surprised with the result of the test and I was in shock! I was reeling and then had a 90-minute drive home totally in shock!”
“I went to a primary care physician to obtain a medical clearance for an unrelated laser skin procedure to alleviate recurring skin cancers on my face. My doctor called me the next day because my WBC and PLT counts were extremely low and my RBC, HGB and HCT suggested anemia. She referred me to specialists which was a shock because I had no real symptoms other than slow healing from dermatological surgeries and more persistent bleeding from the numerous skin cancer procedures I routinely undergo. I went to see an oncologist. He did more blood work and a physical exam during which he confirmed the abnormal blood results and detected an enlarged spleen. He then ordered a CT scan of my abdomen and pelvis that revealed enlarged liver and spleen and numerous lymph nodes in my abdomen. At that point, he discussed the possibility of a form of lymphoma but did not feel like the symptoms were indicative of leukemia. He ordered a bone marrow biopsy. I learned the results which confirmed a diagnosis of Hairy Cell Leukemia. My wife was familiar with the disease from her background as a Hematology Medical Technologist, but I was shocked by the diagnosis. I could not process that I had a serious disease let alone a rare leukemia like HCL. The oncologist reassured me that the disease was treatable although he would not call it curable. He compared it to high blood pressure which he said was treatable but not curable.”
“I went to my PCP for a routine check-up and blood work, my blood work came back abnormal and we were sent to a hematologist/oncologist. Once we saw the oncologist she watched my blood work for a month until I started having pain on my left side, which ended up being an enlarged spleen. She then conducted a bone marrow biopsy which showed that I had HCL.”
“I was diagnosed after a 6-7 month journey of excruciating lower back pain. I had to be taken by ambulance to hospital because I couldn’t walk or move. They discovered that my L-2 vertebrae was fractured and eating away and had been that way for a few months. They did a vertebroplasty surgery to fix it, ran a bunch of blood tests, and discovered that I had HCL.”
“I visited the GP because I was feeling dizzy. She sent me to the lab for blood testing. The GP called me to go the hospital immediately. My blood counts were extremely low so I received blood transfusions that day. The lab did flow testing and 2 days later the hematologist told me what was wrong with me.
It was a rollercoaster.”
“My general practitioner noticed abnormal blood counts as a result of a routine annual physical. He referred me to the oncology department of a local hospital, where I was diagnosed. The word that I use to describe this process is nerve-wracking.
I know that HCL is a slow-moving cancer and doctors have the luxury of moving carefully, but the emotional reaction is to want treatment now.”
“I had sudden hearing loss which led to me being referred to an ear, nose and throat consultant. The blood tests he conducted showed low count in white cells, red cells and platelets. This led to me seeing a hematologist who eventually conducted a bone marrow biopsy. The biopsy clearly showed hairy call leukemia.”
“I’d had a history of neutropenia dating back to the 1990s. I experienced mild thrombocytopenia and lowering platelets. Within a few months, my platelets and neutrophils had dropped to a critical level and my spleen was enlarged. A bone marrow biopsy revealed 70-80% involvement of HCL.”
“Before being diagnosed with HCL, I had been treated for deep vein thrombosis in my right calf. My primary doctor thought it was unusual for me to have a DVT given my age and life habits. He wanted me to be checked out by a hematologist to see if they could figure out why the blood clot had formed in my leg. The hematologist ran various tests on my blood. When we met for the follow up after the testing, he told me that my high white count indicated leukemia was likely. He told me that my white cells had a “hairy” look to them which led to a preliminary diagnosis of hairy cell leukemia. He performed a bone marrow biopsy to confirm the diagnosis. I had heard bone marrow biopsies were somewhat painful, but the one I had was pretty comfortable. My doctor was very experienced in performing the procedure, so I’m sure that had something to do with it. Treatment was not required initially, but testing done a few months later indicated that counts had deteriorated and I would need my first treatment.”
“I am a 47-year-old mother of 2 active boys and 2 very active dogs. We live at 8,200 feet and I am an endurance athlete. I first noticed symptoms as my heart rate was rapidly going up for no reason. I would suddenly not be able to walk up stairs without stopping, and had several incidents of having to turn around on ski ascents. I really just thought that I was getting older and slowing down. Having the kids and a busy life kept me from having my “heart problem” checked out, as that was what I thought was going on. After seeing my GP and getting an unusual EKG, she asked me to see a cardiologist. I had my bloodwork done and my doctor called an hour later and told me to go straight to the ER for a blood transfusion. My hemoglobin was 4.2. I was admitted to the hospital the next day for a transfusion and bone marrow biopsy. The next day, I was admitted for a 6-day course of chemotherapy.”
“When I was first diagnosed, my symptoms were a raspy voice, an enlarged spleen, being exhausted all the time. Every single blood level was extremely abnormal. A bone marrow biopsy verified that I had Hairy Cell Leukemia.”
“My HCL was found through a blood test while I was in the ER. I had low platelets. I ended up at a hemotologist’s office. Eventually a bone marrow biopsy was done, which showed I had HCL.”
“I was hospitalized with pneumonia. They did a myriad of tests and discovered the hairy cell leukemia. I knew that for a couple of years my white cell count was very low. It had bounced around.”
“My blood counts were getting lower and lower so my general practitioner sent me to a hematologist to get further tests. I had a bone marrow biopsy and was told it was hairy cell leukemia. The process was a series of steps ruling out common ailments.”
“I had been experiencing a lack of energy and extreme tiredness for quite some time. Receiving treatment for aggressive Crohn’s Disease masked my out of line white blood counts and low-end numbers for Hematocrit and Hemoglobin. After a test to determine effectiveness, I was removed from Imuran. A series of new lab tests showed worrisome numbers on red and white blood counts, so I was told to see a hematologist. The hematologist repeated the labs and then ordered a bone marrow biopsy to further investigate. At the age of 55, I was diagnosed with hairy cell leukemia.”