Stories: Navigating Treatment and Building a Support Network

Stories are powerful. We want to support you as you navigate the challenges of hairy cell leukemia—whether you are newly diagnosed, dealing with a relapse, or receiving treatment. Everyone’s experience is different; some stories may sound like yours, while others may be quite different. We hope that these shared experiences will empower you, reminding you that you are not alone.

We encourage you to share your own story too, as it can provide hope and support for others, both now and in the future!

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Patient Stories: Perspectives

“What would you say to someone who has just been diagnosed? What advice would you offer to them or their families?”

  • “Trust your body and how you feel rather than just letting symptoms linger. I had other medical conditions that caused the diagnosis to be delayed. I had to endure many months of feeling extremely tired, while having difficulty focusing at home and work. Don't accept a poor quality of life. While it is never fun to have to be admitted into the hospital for in-depth testing and intensive care programs that may have side effects, life is too short to just let your condition rule how you live life. For the bone marrow biopsy, ask your hematologist to order pain relief and anxiety meds if you feel overwhelmed with getting the test done. You have to be your best advocate. My wife was allowed to be with me during the bone marrow biopsy and in the hospital for chemo, which helped me relax.’’

  • “I felt fortunate, that "it could have been worse.” I have friends that have had much more difficult ordeals with various cancers, months and months of chemotherapy and illness. Cladribine was a one week dose, not many months. The fear, the concern is always there with me, always in the back of my mind as to if it will come back and when. I also ponder how on earth I was affected by this disease. There's very little knowledge out there as to how people get HCL. I live a super healthy life, I exercise, eat organic, do all of the right things. The quiet reflection that comes from enduring an ordeal like this however, can bring amazing growth in the long run. Be kind to yourself, and let those around you help. It's very frustrating to suddenly be bedridden, or unable to be active or social. It's ok, it will pass and it will become a blip on your life screen. It's ok to feel sorry for yourself at first. It's ok to cry and feel sad.”

  • “Hairy cell leukemia was described to us as, if you have to have a leukemia this is the best one to have. However I don't think we were prepared for all of my white cells to be depleted from my system and feeling as if I had no energy or strength in my body. My advice to other patients would be to stay positive. There is a light at the end of the tunnel. Cancer is an education that you really don't want to get, however read up on everything and anything you can about the disease. You may hit rock bottom with your blood count numbers, but they will eventually start rising and you will feel better.”

“First, I would say to have hope. Do your research. Try to learn as much as possible about your disease, especially because many oncologists have limited direct experience with HCL. If you have questions about how your doctor is interpreting the research, ask them to explain their reasoning. Be willing to advocate for yourself and participate actively in decisions about your treatment. You have a powerful motivation to seek the best treatment available: you want to live. A good medical practitioner will appreciate having a patient who is willing to fight the disease and advocate for appropriate care”
— Kevin
“It’s all in the mind. Mind over matter. Overcome the illness in your mind first.
One idea that has stayed with me comes from Stephen Covey’s The 7 Habits of Highly Effective People: begin with the end in mind”
— Gaurav
“I have already connected with a newly diagnosed patient in my own city. I told him to remain calm because HCL is treatable, and I shared my own experience with treatment. I reassured him about both the limited side effects I personally experienced and the effectiveness of my treatment.”
— Mario
“First, I hope that everyone receives their diagnosis quickly and that a healthcare professional clearly explains it so the patient can feel safe and well-informed about this type of leukemia. Clear information can help reduce the uncertainty and worry that come with a diagnosis. From my personal experience, I believe that the way the journey begins is very important.”
— Tadeo (Story Translated from Spanish to English)
“I would say to learn about the disease and know that it has a very good prognosis. At the same time, accepting the diagnosis takes time, and you are likely to feel stressed for a few weeks, if not longer. If the stress persists, consider speaking with a therapist. Sharing your experience with others can also be very helpful. Give yourself something to look forward to after treatment, such as a great vacation once your immune system has recovered, or whatever else excites you. Plan activities for the period when you may need to isolate after treatment. I asked others for movie recommendations. You could take up knitting or crochet, or take a walk or drive each day when appropriate.

Finding ways to stay engaged can make that period easier.”
— Shari
“ I would recommend getting a 2nd opinion for an Oncologist from a center of excellence. My Oncologist in Atlanta had been practicing for over 40 years in the biggest hospital in Atlanta and I was patient number 4. It’s such a rare disease you need to see someone who has a lot of experience with the disease. I went to Ohio State from Atlanta twice a year and I am so glad I did. Their knowledge is just on another level. When I needed treatment that took me through both options, the pros and cons of each, and let me make the decision. I was very healthy going in, so either option would have worked. I just wanted to avoid chemo at all costs if I had a choice, which I did.”
— Joe
“I would make sure they know about the Hairy Cell Leukemia Foundation. What a great organization! The website is very helpful. We can get information on clinical trials, we have forums and webinars we can attend; knowing about the Centers of Excellence is quite helpful. I think it’s very important for a newly diagnosed patient to get in touch with the Foundation as soon as possible.

I would also tell them to stay positive. Hairy cell leukemia has a lot of treatment strategies and the great majority of patients who do come down with this rare disease lead full and active lives while managing the disease. Make sure you work with a doctor who has familiarity with hairy cell leukemia and listens to you when you ask questions.”
— Bill
“Stay positive. It could be a lot worse diagnosis! Stay healthy by exercising, eating healthy and staying positive.”
— Brenda
“Learning you have HCL is a huge scare of course. But it often also explains why you didn’t feel well. Have faith that it will be okay, even if you sometimes doubt. You have to get used to being a patient. It takes a while, but normal life will come back.”
— George
“My advice would be to stay positive and always believe that you can do this. My motto was “I’ve got this!” You will have harder times, but it is worth it in the end when you get well and live your life to the fullest again.

I wake every day and say thank you for another day. I smile, a big body smile, and live every moment to the fullest. I am very grateful.”
— Sharon
“If you have hairy cells and are new to this. Best thing to do is try to understand blood cancers and know it’s a slow growing cancer that does go into remission with the proper care of course everyone is different and peoples bodies are different but for most remission lasts a while. Just make sure you have support though it all because it can be tough at times.”
— James
“Do the treatment, it is worth it!! Stay home, do not risk infection!!”
— Lisa
“That it’s a hard road, but that you get ahead, don’t be afraid, and that everything will be fine.”
— Patricia
“Don’t be afraid. The treatment is extremely successful. Don’t be scared about bone marrow biopsies or the chemotherapy treatment, as they are not as painful as some people make out. Be aware that although the chemo is short, the lasting effects will make you tired for a long time. You may also suffer mentally and need to avoid as much stress as possible. Don’t go back to work too soon if that’s possible financially and when you do return make sure you do a phase return.”
— Phillip
“Be patient and get as much advice as possible from doctors who have treated patients with HCL before.”
— Derek
“Once we were educated via an appointment with Dr. Zent we felt confident in our plan for treatment. It was consistent with our doctor in Buffalo. A cancer diagnosis of any kind is devastating, but when we learned of the success rates of other patients we had the strength and confidence to push through.”
— - Michelle
“Physically - Keep moving and get plenty of healthy food and vitamins. Spiritually - This is the best weapon against fear.

Hope hairy cell leukemia does not come back. ‘Where there is Hope, there is Life.’”
— Donald
“I would say that HCL is a ‘kind’ leukemia as it is slow and treatment is fairly easy. There are much worse variants. I would also say try not to Google the disease too much because it is so easy to just read the bad stuff.”
— Pelle
“Don’t panic. This type of leukemia is highly treatable and I’ve lived a more or less normal life 25 years since treatment. The 2CDA is rough for a week, but it could be a lot worse and it DOES NOT cause hair loss! I have had long-lasting infections due to the compromised immune system, along with a near fatal case of C.Diff.”
— Carl
“Start by educating yourself. As soon as I was diagnosed, I informed my urologist of 30 years and my primary care physician of my HCL. Both had “heard of HCL”, but neither knew anyone with it or knew much about it. With my Hematologist/Oncologist, I was in good hands, but I knew from talking to the other doctors that I would need to become an expert myself. I built a library of resources and read up on everything that I could find. I now know more about HCL than I do about the common cold or flu. I no longer fear HCL, but understand how to live with it and be the best I can be going forward.”
— Louis
“The first thing is to find reassurance—this condition is not at all terminal or disabling a priori. Seek reliable information.
The second is to look for support in groups of people with the same diagnosis. The third is to take care of your physical health, and above all, your mental and emotional well-being. And the fourth is to accept help and lean on those who offer it, living without excessive worry.
Hairy cell leukemia is well-studied and perfectly treatable.”
— Benji (Story translated from Spanish to English)
“Don’t Panic. At first, I heard that I had cancer and I just stopped listening. Don’t do that. Remember that people have been receiving effective treatment for HCL for decades and newer treatments are coming online all the time. On a practical level, remember that the disease and its treatment will lower your immunity for a while. As a result, I use hand sanitizer by the gallon and do what I can to avoid large crowds of people without completely cutting myself off from society. Before I had chemotherapy, my hospital had a class where a nurse outlined practical details. If your hospital has one, go; if not, ask for one. You can learn a lot of useful information, like the telephone number of a dietitian or a social worker who can help with billing problems. The most important information I learned was which symptoms (e.g., how high a temperature) were serious enough to merit an after-hours call to the hospital, and a visit to the emergency room.”
— David

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!”
— Jean
“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”
— Gaurav
“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.”
— Joe
“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.”
— Kevin
“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.”
— Mario
“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.”
— Tadeo
“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.”
— Shari
“ 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.”
— James
“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.”
— Thomas
“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.”
— Jerry
“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.”
— Derek
“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.”
— George
“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.”
— David
“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.”
— Philip
“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.”
— Sandra
“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.”
— Bill
“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.”
— Carl
“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.”
— Brenda
“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.”
— Diane
“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.”
— David
“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.”
— Eta
“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.”
— Tania
 
 

Patient Stories: HCL Treatment

“What treatments did you receive and how did you respond to treatment How would you describe your experience and the steps you took to decide which treatment to use?”

  • “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.”

  • “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 Vemurafenib with Rituximab and tolerated it well. There weren’t many adverse effects, only a bit of fatigue, and I had to protect myself from the sun by using sunscreen. Other than that, my counts rose quickly, and after two months I was able to achieve complete remission. I decided to take this treatment because it is a chemotherapy-free regimen and also very promising in contributing to long-term studies and helping more patients. I had already received pentostatin four and a half years ago.”

““I was treated in Seattle with a seven-day IV infusion of cladribine, completed on June 11, 2015. My oncologist wanted my disease burden to increase significantly before moving on to rituximab. After eight weeks, I declined the treatment because the studies I had found used a different timing, and I had lost confidence in my treatment plan. When I required treatment again in 2016, newer studies were showing promising results with cladribine and rituximab administered closer together. After discussing the research with my medical team, I began eight weeks of rituximab starting in the second week.

It turned out that I am highly allergic to rituximab. Because of the reaction, my first infusion had to be completed on the second day. The remaining seven infusions were preceded by a combination of Benadryl and dexamethasone to help control the reaction.””
— Kevin
“I was given cladribine for five days and responded well. Afterward, I remained in isolation for 45 days. My first oncologist stopped my cladribine after two days, which led me to urgently change hospitals. I then found another oncologist who was wonderful and helped me continue my treatment. I have learned to forgive the people who made my journey more difficult, and I remain grateful for the physician who helped me through treatment.”
— Gaurav
“I was explained both treatments at Ohio State University Hematology center. I chose to go with the non-chemo treatment of 6 infusions of Obinutuzumab and 112 days of Vemurafenib taking 2 pills a days. The pills made you feel bad and I only took 2 a day., I couldn’t imagine taking 4 or 8 a day. I got to the point where I would take them at night so I would be sleeping while I was feeling bad. They make you tired and you have to drink a lot of water every day with them so you go to the bathroom a lot. I never slept through the night on the pills which also affects your sleep. After infusion #1 the next day my fever went to 104.7. I was eating Tylenol and Motrin every 2 hours. Finally at 5.00AM ,y fever broke and I thought my wife through a bucket of water on me I was so wet. But after that event I never had an issue with any of the Infusions 2-6. Staying out of the sun was a challenge but I wore big hats and long sleeve shirts everywhere I went. You also have to be careful with your diet. No fried foods, no lettuce, no alcohol, no raw seafood like Oysters, nothing where you could get a parasite. If you follow this, you don’t have any issues with diarrhea. Other than the pill making you tired and making you not feel so good, the other issue is that the process is long. It’s 4 months. But once you finish the process, it’s a great feeling that you’re done. After about 2 weeks, you really start feeling better. You begin to get your energy back. At 4 weeks, you’re about 80% back to normal. I made the decision to go non-chemo because I did not want any part of Chemo if I could avoid it. Fortunately, the alternative treatment was available when I needed it. I didn’t want to worry about getting pneumonia or having a relapse in 2-4 years. I felt like the alternative treatment had a better chance of curing the disease.”
— Joe
“I received two-hour cladribine infusions over five consecutive days. My hematologist thought adding rituximab would be too harsh but said that if I relapsed before five years, we would consider it then. A PICC line was placed in my upper arm a few days before treatment. The first few days of the infusion went well, with increased urination as the main side effect. On Day 3, I started developing fevers, and on Day 4, I was diagnosed with a sinus infection. I was very ill for about 24 hours, but antibiotics resolved the infection.Hydration was very important during treatment. When I had fevers, staying adequately hydrated became difficult, so I received IV fluids before my infusions on Days 4 and 5. On Day 5, my bloodwork showed that my white blood cells and platelets had dropped significantly, and my hemoglobin had also decreased. I felt tired and run down, experienced nausea, and developed a metallic taste in my mouth, with specific aversions to coffee and sweets.By the second week after treatment, my platelets had normalized, and by the fourth week, my hemoglobin and neutrophils had normalized. About two weeks after treatment, I started feeling normal again and began working from home.

My advice is to pay special attention to hydration and to discuss symptom management with your hematologist. Make sure you learn about HCL and its treatment so that you feel comfortable communicating with your hematologist and developing a treatment plan that works for you.”
— Shari
“I received intravenous cladribine for five days. I responded well to treatment and did not require hospitalization or a blood transfusion. Overall, my experience with treatment was good because I tolerated it well. My hematologist made the treatment decision.”
— Tadeo (Story Translated from Spanish to English)
“I used Cladribine, and they tried rituximab. My body handled Cladribine fine, but definitely couldn’t handle rituximab. The experience with rituximab was horrible, scary, and I wouldn’t wanna do it again. I haven’t really even had an appetite to eat.”
— James
“My husband received 5 doses of cladribine for five days straight. The chemo was not the difficult part, it was staying healthy post chemo which can be difficult, especially when we have two small school age children. He did develop a fever about a week after treatment and then was hospitalized for five days for a rash. Once he was all cleared and his levels started to go back up he was released and recovered well at home. In January 2025 he had another bone marrow biopsy and had achieved remission.”
— Michelle
“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.”
— George
“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.””
— David
“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.”
— Jerry
“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.”
— Tania
“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.”
— Philip
“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.”
— David
“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.”
— Louis
“Before I was treated, the doctors had to clear the pneumonia I had. It turned out that I had two types at the same time. I am extremely satisfied with how they took care of me. The treatment was started after pneumonia cleared. It was non-invasive. It of course took the immune system down and that is normal. I also got a fever, but I was under 24-hour monitoring and blood was drawn every 4 hours.”
— Pelle
“I went in the hospital for 7 weeks. My body needed a week to get well enough before they could give me 5 consecutive days of Cladrabine chemo treatments. My body bottomed out. Twice I was told they couldn’t do anything more for me and that I was the most complicated case they had. I fought hard to get through with a positive attitude and family support.”
— Sharon
“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.”
— Diane
“After being diagnosed, I received 4 hours of cladribine for 5 days straight. I felt fine after day one and two, but once day 3-5 hit, I felt extremely weak and nauseous. My white and red cell counts dropped for 3 months and I couldn’t get out of bed for 3 months. I lost 35 lbs. and overall felt terrible. My doctor started consulting with other docs across the country. Finally my blood counts started getting better and I magically started feeling 100% better. It took over a year for my blood counts to get into the normal range, but was able to get back to normal after 3-4 months.”
— Derek
“I received cladribine for 7 days by pump. The experience was a little scary; I had terrible itch and rashes. I read and talked to my general practitioner and oncologist. In hindsight, I did not know as much as I do now.”
— Eta
“I received Rituximab on day 1 and day 8 after 24/7 of Cladribine. My experience was good, although later I had a Febrile Neutropenia that took me back to the clinic. I felt very weak and without strength.”
— Patricia
“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.”
— David
“We waited 18 months before beginning treatment. I received 5 consecutive days of cladribine, which my body tolerated without apparent problems. However, three days after finishing the cycle, I developed hemolytic anemia, which required hospitalization in isolation, multiple blood transfusions, corticosteroids, and 24-hour medication.
After stabilization, I started rituximab, supported with filgrastim, and since then, I have had no further symptoms or complications, except for occasional fevers that were ordinary and treatable with Paracetamol.
I consider my experience to be close to the best way this treatment can theoretically proceed. I see it as complete and empirically effective.”
— Benji (Story Translated from Spanish to English)
 
 

Patient Stories: Relapse

“Can you describe your experience with relapse?”

“As I expected, I relapsed and was ready for treatment again in June 2016, approximately one year after my first treatment. By then, new studies were showing better results with cladribine and rituximab administered closer together. After discussions with my medical team, I received cladribine followed by eight weeks of rituximab beginning in the second week. I am highly allergic to rituximab, so controlling the reaction required additional medications. My remaining infusions were preceded by Benadryl and dexamethasone. My white blood cell count remains in the low-normal range, and my platelet count has remained stable, although somewhat below the normal range.

I’ve been disease-free for nine years now. I’m 71 years old, and I hope to finish my years without having to deal with HCL again. If I have to, I will, and I’ll be armed with the latest studies available here to do battle once more.

Don’t EVER give up.”
— Kevin
“At the time of writing, I am experiencing a relapse and will begin treatment on September 8, 2025. I learned about the relapse through the blood tests I receive every two or three months. I was in partial remission for almost four years.

My hematologist recommended five days of cladribine followed by eight treatments with rituximab. ”
— Tadeo (Story Translated from Spanish to English)
“I relapsed after about 5-6 years after my first chemo treatment and I learned it relapsed from bleeding from my nose and after I got a bone marrow done. And really not sure how I will respond since it got done a week ago.”
— James
“I had not relapsed at the time of writing this story in September 2025. I continue to see my hematologist regularly every three to four months.”
— Mario
“I’ve relapsed 4 times over the past 28 years.
2002: Treated with Cladribine again and had a good response.
2008: Treated with Rituxan IV. This was not as easy. I believe they gave me IV Benadryl to go along with the IV Rituxan. I was in a bed for this, I would sleep, then be very groggy. My wife would accompany me and had to drive me home.
2014: counts dropped. I was recruited to enter a study testing Ibrutinib for about 4 months. Counts dropped again during the trial. The Ibrutinib was discontinued, and my counts came up to acceptable numbers.
2018: Counts dropped again. Treated with Pentostatin and Rituxan IV. I was anemic when I started the treatment. My Hb went down to 6.2 during the course of treatment. The low Hb led to a transfusion. I had “Rituxan maintenance” into the spring of 2019.
I’m seeing my Hematologist every 4 months at this point.”
— Lawrence
“2023 relapse 3 years since treatment. Low blood count for white cells & neutrophils. Platelets have been low the entire time since treatment as well. Looking at a new drug because I didn’t get the durability from cladribine. 2 x 28-day course of ver & mixed in fortnightly rutaxamub waiting on approval for this to go ahead as the drug isn’t approved for HCL in Australia”
— Lauren
“Six years ago, I had the 24/7 cladribine treatment with no side effects whatsoever. I was fine until my platelets started dropping. I had cladribine once again, this time for 2 hours each day for 5 days. On the sixth day, I had a fever of 103.7 and ended in the hospital for six days. I am fine now, however this last treatment left 10% hairy cells. So I had 8 weeks of Rituximab.”
— Brenda
“After about another 5 years I relapsed they tried Cladribine again, this time remission only lasted 18 mths.......so they tried CHOP apparently there was some success in the US all CHOP did was make me violently ill....so they tried another new treatment Mabthera now known as Rituxiban did It make a difference doctors and i not sure....during this time I had multiple BMB,s and scans.....bringing me up to the 2000,s in 2003 I became violently ill whilst on a overseas assignment in China/India couldn’t eat...back home and diagnosed with a lymphoma type tumour blocking my duodenum so a stomach by pass performed I almost died....another tumour developed about 9 months later and I had Radiation 20 sessions..shortly after I had to give up work...couldnt travel anymore. since 2004 I have had multip[le treatment and heart issues caused by chemo....bendamustine rituxiban back in hospital we had moved to Queensland and severe sepsis nearly died again...then tried the lifesaver on trial and compassionate supply Ibrutinib...success remission for 5 years then started to get toxic so suspended Ibrutinib......now watch and wait with HCL showing signs of returning Fatigue bone pain night sweats etc now under diagnosis again and meeting with Haem team to determine next steps....”
— Tony
“I did relapse. My blood was monitored every 2 months. After 7 years in complete remission, there were detectable HCL cells in the blood. As their counts climbed, the normal blood count went lower. In 2017, I had some infections and I was treated with 4 times Rituximab only, since they were afraid to put me on 2-CDA. At that point my bone marrow was 20% HCL. I responded and all blood counts went to normal, but there were still HCL found in the blood. Last summer I needed treatment again. This time they treated me with a 5-day subcutaneous course with 2-CDA, followed by 8 weekly doses of Rituximab. They put me on Valtrex and Pentamidine inhalation after the 2-CDA. I need to take the Valtrex for a period of 6 months and the inhalation of Pentamidine every month for a period of 12 months. Blood testing after 3 months resulted in CR and no sign of any HCL in the blood.”
— George
“I was diagnosed with HCL 21 years ago, and when I think about relapse, what comes to mind isn’t just the setbacks—it’s the resilience that grows with each challenge. I’ve been treated five times. My journey started with 24/7 Cladribine in the hospital for a month, followed by two relapses less than three years later. A new five-day Cladribine infusion treatment combined with Rituximab seemed promising, but I was allergic to Rituximab and could only continue with Cladribine.

When I relapsed again, I learned in New York City that Cladribine was no longer an option for me. That’s when I tried Vemurafenib for the first time. At that stage, it was given in high doses with significant toxicity, but it seemed to work. Later, when I relapsed again in 3 years, my doctors used a new approach: a lower dose of Vemurafenib combined with Rituximab. The reduced dose made the treatment much more tolerable, and thanks to innovative protocols—including microdoses, longer infusion times, and the use of steroids—I was finally able to tolerate Rituximab as well. That was five years ago. Today, I’m still in remission, feeling healthier and stronger than ever.

My story reminds me, and I hope it reminds others, that while relapses can feel like doors closing, science and perseverance continue to open new ones. ”
— Carlos
“I have relapsed 3 times now. I was treated the second and third times with cladribine. Most recently, I was treated with moxetumomab pasudotox and am currently in remission. The end of my remissions was determined from quarterly blood tests. When my neutrophils dropped below 1.0 and platelets dropped below 100K, treatment was planned. I have never felt ill from the hairy cell leukemia. No one really knows if my DVT was a result of having HCL for sure, but the doctors are suspicious that they are related. I have not had additional DVT issues since the first time. I used to take Warfarin regularly to prevent future DVTs, but have switched to Xarelto now. I generally do not get a lot of colds, have never had pneumonia, and can’t remember the last time I had the flu. Although my neutrophils are always on the low side, even when I’m in remission, it doesn’t seem to cause me a lot of trouble with my general health.

I did have a bad experience on my last treatment with moxetumomab pasudotox. I came down with capillary leak syndrome after just 2 infusions and had to stop treatment. Despite some side effects, the moxe did fix my blood counts very nicely and I’m in remission again with the highest counts I’ve had in several years. Not bad for getting just 2 of a scheduled 18 infusions!”
— Bill
“I was hopeful the Cladribine would work well and my remission would be long. However, that was not the case. My remission lasted only 24 months. I was very disappointed after being told of the slow growth HCL has. Apparently not so for me.

For my second treatment, my oncologist decided to use Pentastatin instead of Cladribine. I was on Pentastatin IV for about 3 months. My condition worsened. Pentatstatin had NO positive effect on me. My blood counts dropped seriously low; ANC in the .3 and then .2 range. There was fear to return to Cladribine using the normal dose treatment. My oncologist consulted with peers and determine to use a weekly low IV Cladribine dose over an extended period and supplement this with Rituxin. The result of very positive. This time remission was only declared after a bone marrow biopsy showed no residual HCL in my marrow. My remission lasted 5 years this time.

Two months into remission I developed Sweets Syndrome (or so the condition was labeled). I was on Prednisone for 8 months to clear the initial condition and keep it away. Sadly, my HCL returned and we followed the same protocol (weekly low IV dose of Cladribine and Rituxin over 6 weeks). While our hope was same result as before, the reality was only a 12 month remission. Very disappointing and unnerving. Didn’t have any answers or thoughts as to why my results varied so much.

Today I’m in the midst of my fourth treatment. Treatment has changed. Now the oncologist is attacking the BRAF positive marker. I am taking Vemurafenib tablets with Rituxin IV. I’m hopeful this protocol will achieve positive and long lasting results.”
— Fred
 
 

Patient Stories: Support and Coping

“How have you built a support network? Where have you turned for connections, advice, and support?”

 

  • “My family understands what's happened to me and the limits I have now and help me to carry this, but my disease is also their worry. I have the direct phone number of the specialized hematologic nurse and it's never a problem when I call with a question or a problem. Also my GP and his assistant know what happened. So when I have doubts, it's never a problem to ask for a lab test. I don't have to explain. It's not easy to explain to friends and colleagues. Sometimes, completely out of the blue, I feel really tired in a strange way, just like I have a body made of lead. Strangely, resting doesn't help; it's a different way of being tired. So sometimes I have to cancel appointments even though I look healthy on the outside. I was at the Hairy Cell Leukemia Foundation meeting in Germany a few years ago and found out that most of the patients I met experienced the same. So for me that was very valuable; it was not something in my head. I finally understood that it had to do with HCL or the treatment.”

  • “My wife has been my main support. She made sure that my care plan was in order. We planned what we would ask about before we saw the doctor. She came with me to all appointments, took notes, and asked questions. Often, I just sat there like a bump on a log. She also did a lot of research. I didn't want to have to explain my medical condition over and over, so I created an emailing list and sent email updates to friends every two weeks or so for about three months. Then I decided that there was really no additional news to tell, so I told my friends that my treatment was finished. For several months, I avoided doing research about the disease and did not visit the website of the Hairy Cell Leukemia Foundation. This was a mistake. The Foundation has a great site and now I visit it two or three times a week. I go on the patient bulletin board and try to reply to the posts of others; I hope it will make someone feel less alone, even if I don't have a lot of relevant information to add. Also, I recently found on the website information about a clinical trial that I may qualify for and I've started the process of enrolling. This gives me the feeling that I'm seizing control of the situation and that I'm not helpless in the face of this disease.”

  • “I noted early on that HCL is rare. That told me that there would be little broad exposure and or regular studies and reports for me to access. I found the Hairy Cell Leukemia Foundation to be of comfort in that I could attend webinars, connect with others and also get a general sense of the experiences of HCL patients at various stages of their post-diagnosis lives. I continue to stay current through the foundation and hope to be an active and informed member of the HCL community. I consider myself to be extremely fortunate and have a much more positive outlook about life and the future than even before my original diagnosis!

    At times, I found myself having to be strong for my family. Once I learned what HCL would be, I knew it wasn't likely to be a long and painful road ahead that many might associate with other forms of leukemia. Once I showed my family that it was under control, I knew what I needed to know, and that I was feeling great, I sensed that they followed my lead and were able to discuss my condition without pure emotion. Part of my journey is to tell friends and colleagues about my condition and then immediately alleviate their concerns and fears for my well-being.”

“My family and friends are my support network. Some of them took the time to read about HCL. I waited a while before telling my daughter, and she may have struggled with my diagnosis the most. I was selective about what I shared with her so that she could remain optimistic and not become overly stressed about my diagnosis. My workplace has also been very supportive, allowing me to work from home for as long as needed and to take sick leave when necessary.”
— Shari
“My medical follow-up has primarily been with my doctors. I have not had contact with other people who are going through the same situation. My family and friends support me emotionally. My wife, in particular, has been with me throughout the entire process and has remained by my side since the beginning. ”
— Noe (Story Translated from Spanish to English)
“My family stood by me throughout my experience. The HCL community on Facebook was also very helpful, and several of my neighbors, bosses, colleagues, and friends supported me during the difficult times.”
— Gaurav
“I have read all the articles and stories on this website. It has been very helpful. My doctors in Atlanta and Ohio State have been great at answering my questions and explaining what’s going on. After 17 years and no treatment, I got pretty well educated on Hairy Cell.”
— Joe
““Although I searched social media and websites, I found it difficult to connect with other patients. Fortunately, I have had the support of my family and friends from the very first day. I also sought help from a psychologist, who referred me to a psychiatrist. To this day, I continue receiving support from both professionals.”
— Tadeo (Story Translated from Spanish to English)
“Fortunately for me, my wife worked in hematology during the early part of her career and studied diseases such as HCL. She was also able to quickly locate a support group for me and research new treatments for the disease. I think it helped that she came to every appointment and treatment and kept notes on the details of what was discussed, my questions, the answers and my progress. She kept family and friends aware of my progress which saved me from reviewing the details with multiple people over and over again. My friends have been very supportive.”
— Thomas
“My friends and family made sure we were fed with healthy food during my treatment phase. I did not leave home, except for doctor’s appointments, during the initial 90 days, so daily phone/video contact with friends and family was very important.”
— Lisa
“I am a 3 year survivor. My support group has been family and friends. Long after I got out of hospital and started healing, the Leukemia Society of Canada started having local meetings. We would share our stories and chat about different types of leukemia.”
— Sharon
“My support network is family and friends. I have not been able to meet or speak to anyone else who has had this condition as it is so rare. Also whilst in the hospital, I learned I was one of very few who had been treated for it there. Most of the nurses hadn’t heard of the condition. Family and friends have done everything they can to support me, from taking me for appointments, visiting me in the hospital, and keeping my morale up.”
— Philip
“I really don’t have family other than my wife and 2 kids. I have an 18-year-old and an 8-month-old baby, they were my emotional support and were always at the hospital with me. They even moved an extra bed in the room for me due to me not wanting to be alone and my anxiety flying through the roof. I even opened a GoFundMe page because I did not have insurance.”
— James
“My support network consisted of my wife, who was always a fierce advocate and sometimes a mediator between my oncologist and me. Following the success of my treatment, my oncologist and I developed a deep respect for each other that lasted for years. I also consider the Hairy Cell Leukemia Foundation to be a major part of my support network. Through HCLF, I was able to review the latest studies about my disease and communicate more knowledgeably with my oncologists. I continue reading new studies because you never know when you might need that information.”
— Kevin
“I have some lovely friends that walk the walk with me. I try to keep my adult children on the periphery because they have children to raise and are busy and I simply don’t want them too heavily involved at this time. My parents are 1500 miles away and 90 years old, so I don’t turn to them. I have joined the patient forum and am hoping for more variants to emerge. I find this is a very lonely journey though because no one understands!”
— Jean
“I don’t talk about this much with my relatives or friends, but mainly because I do not feel sick. So on a daily basis, I tend to forget I have this disease. Besides, my family still feels a bit scared of it; either they think I have nothing at all, or that everything is in my mind. So, they prefer not to talk about it.”
— Gina Alejandra (Story Translated from Spanish to English)
“We kept our friends and family close and in the loop. We asked for help when we needed it, especially when Nick had to spend time in the hospital. Nick was never afraid to call his nurse/doctor to ask questions and determine if he needed a follow up.”
— Michelle
“I have received a lot of information from the Hairy Cell Leukemia Foundation, I listen to many workshops, and I have a group of people who speak Spanish with Tricholeucemia on WhatsApp. It has been very helpful”
— Patricia (Story Translated from Spanish to English)
“Fortunately, I have not needed much support because I have felt very well at all times. My family lives far away, except for one brother who has been 100% by my side—both on the phone and physically during hospital admissions and treatments. The rest of my family and friends have been kept informed or have checked in, but I have not required any additional assistance. My children also knew from the very first day, and with a clear explanation, it only brought them reassurance.

Another very important network of support and information has been a WhatsApp group made up of patients and former patients from Spain and Latin America. Many of them are very knowledgeable and well-informed, thanks to their own experience with hairy cell leukemia. ”
— Benji (Story translated from Spanish to English)
“I did not know anything about the disease when I was diagnosed. I started researching it online, in both Spanish and English, and found an English-speaking Facebook group for patients that was very helpful.

Through that group, I discovered the Hairy Cell Leukemia Foundation website, which became an even greater source of support because of the quality of its information and scientific research. I also contacted the José Carreras Leukemia Foundation in Spain. Although it specializes in other types of leukemia, they researched HCL for me, shared my case on their Facebook page, and connected me with a couple of Spanish patients.

Together, we created a WhatsApp group that has continued to grow and now includes members from several Spanish-speaking countries. This group has contributed greatly to connecting Hispanic and Latino patients with HCL.”
— Mario (Story Translated from Spanish to English)
“I’ve been very happy with my support network. I have a very kind and wonderful wife who takes excellent care of me. I am truly blessed! My son and my daughter also help keep me smiling. My father kept me company during some of my infusion sessions. There’s always been someone there. My doctors are all talented and committed to helping me stay in remission as long as possible and keep up to date with new treatment options. I was excited to find the Hairy Cell Leukemia Foundation a few years ago and that was another new opportunity to get more information and for me to stay informed on what’s happening with hairy cell leukemia. Nice to get on the patient forum from time to time and see if I can answer a question for someone or ask a question if I need some help. I’m also a musician and enjoy playing music with my friends at least once a month and that keeps the happiness quotient high. I also enjoy going to church and visiting with my fellow congregation members and they help me stay positive as well.”
— Bill