Patient Stories: Diagnosis
“When and how were you first diagnosed with hairy cell leukemia?”
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“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.”
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“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.”
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“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 was 46 and otherwise in excellent health, recovering from sarcoidosis and an autoimmune disease that had significantly affected my life from 2018 to 2022.
After two bone marrow biopsies, I eventually learned that it had been hairy cell leukemia all along”
“I was diagnosed with HCL 18 years ago. It was found through a random CBC test, and then I was tracked for 18 months before my WBC went outside the normal range, and they did a Flow Cytometry on my blood and determined I had Hairy Cell. For 17 years, it was watch and wait every 90 days till Oct 2025, my WBC, RBCs, Hemoglobin, and Platelets got to the point where I needed treatment.”
“My first symptom, a high white blood cell count, was discovered in March 2011 while I was being treated for an ulcer. HCL variant was finally diagnosed several months later, in July 2011.
I remained under observation until the disease burden was considered high enough to begin treatment in June 2015.”
“I was diagnosed in August 2019 after being referred to a hematologist by my primary care doctor following the results of a routine check-up that showed pancytopenia. This check-up took place in late April of that year.
I was feeling normal, perhaps a bit tired, but had no other symptoms. My hematologist proceeded with additional testing, including a bone marrow biopsy, and I received my diagnosis in late July.”
“I was diagnosed on December 14, 2021. I learned about my diagnosis when I logged into the laboratory’s website and saw my results. I would describe the process as traumatic.”
“I experienced a very fast heart rate while working out at the gym and went to a hospital emergency room. I was diagnosed with paroxysmal atrial fibrillation and stabilized in the ER. Incidentally, bloodwork was drawn, and my platelet and white blood cell counts were low.
I was referred to a hematologist and underwent a bone marrow biopsy, which revealed that I had hairy cell leukemia. I read my own bone marrow results and subsequently had a panic attack. However, once I read more information about HCL, I gradually calmed down. I knew I had an issue and was relieved, in a way, that I did not have a more aggressive form of leukemia.
I was glad I found out before my follow-up visit with the hematologist because we were then able to spend the appointment talking about treatment. If she had informed me for the first time at the appointment, I don’t think I could have processed the next steps.
The time from diagnosis to treatment was about three months. The hematologist said I could wait longer if I wanted, but I elected to move forward with treatment.”
“ I was diagnosed with Hairy Cell in 2019 I was having a discomfort in my left side so i decided to go to the hospital. I wasn’t really expecting anything serious when going, I then had tests run at the hospital and I was told my spleen was enlarged but they didn’t know why so they admitted me (mind it I was a heathy 39 year old never smoked or did drugs never been admitted in the hospital before into then) So while admitting me I was freaking out and scared. The next day they told me they needed to do a bone marrow I was like what is that? Worst thing to do was look it up to see at this point my anxiety went though the roof. So next day came they took me down to the room and I see about 10 nurses in the room with masks up there hats and I’m in tears. They then put me in twilight I was scared to death the nurse had to hold me hand like a kid. So when tights happend I think I was in the hospital 2 days. I then had a oncologist and they told me when my bone barrow come back I had something called hairy cell leukemia I then started to ball my eyes out and I said why me i have always been healthy. At this point i went though 5 days of chemo with cladribine I did fine with it no side effects. After a while things started to build back up and I was in remission. 2026 I wake up 1 morning my nose was bleeding where I couldn’t get it to stop I had to go to the hospital and they also couldn’t get it to stop. I think I was bleeding 5 hours. They had to give me blood transfusions and platelets because they said my counts was very low and I couldn’t clot up properly due to my platelets being so low. So after 2 days I left the hospital so my oncologist and he wanted me to get a bone marrow done to is time I was fully awake test come back that my hairy cell was back and worse then the first time. Because the first time I didn’t have any bleeding or needed platelets or blood to be giving to me. This time I needed both. I then went to the hospital to be checked because I tasted a little blood in my mouth they told me I looked ill and very pale they admitted me in the hospital they then gave chemo there but this time they tried to mix chemos something I didn’t do before. I was giving 5 days of cladribine and they tried to give me rituximab however I wasn’t able to finish the full bag there was a little bit left. Within a hour or having the rituximab my body started to shake heavily and couldn’t stop I was throwing up and my chest was hurting they stopped it and waited 30mins they started it again same thing happened heavy shakes throwing up and chest hurting that scared me I was having a allergic reaction to it mind it they still wanna give me 7 more treatments of it and I’m telling myself if my body did that I can’t handle it that stuff is extremely strong. So I stayed in the hospital for 2 weeks while they gave me around 6 or 7 bags of blood and a few bags of platelets because my counts for everything were still super low. So now I have an appointment to see a doctor to have blood work done to see if anything has changed. Mind it, I have a PICC line in my arm now.”
“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.”
“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.”
“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.”
“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 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.”