Patient Stories: HCL Treatment and Building a Support Network

Stories are powerful. Through these stories, we hope you might have a better understanding of what to expect when you are diagnosed, relapse or receive treatment for hairy cell leukemia. Every patient is unique, so the stories you read here might mirror your experience or look and feel different from your own. We hope these stories inform and empower, and remind you that you’re not alone in this journey with a rare disease.

Patient Stories: Perspectives

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

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.

-Jerry

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

Upon learning of my relapse, I felt frightened as I was not expecting this so soon. Once I got over the initial reaction, I realized that I am very lucky to be dealing with a chronic leukemia that is manageable. When I asked my PA how to handle this she said, "Just Live.” That's my mantra. I'm alive and living each day. I feel thankful for that.

-Sandra

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.

-Philip

I struggle with the question of why did this happen to me? Did I do something in my past life that made me more susceptible to this disease? I wonder about pesticide exposure when I did my own lawn work and also because I owned a lawn and garden store and handled pesticides frequently. I grew up in a small town with a nearby textile factory dumping chemicals in a river where my brother and I played. He does not have the disease. I also wonder if there is a connection between the numerous basal and squamous skin cancers that I have had for more than 25 years and whether the two diseases are related in some way.

-Thomas

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 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.

-Tania

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

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

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.

-David

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

Stay positive. It could be a lot worse diagnosis! Stay healthy by exercising, eating healthy and staying positive.

-Brenda

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

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

Be patient and get as much advice as possible from doctors who have treated patients with HCL before.

-Derek

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

Patient Stories: Diagnosis

We asked, “When and how were you first diagnosed with hairy cell leukemia?”

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 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

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

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 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

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

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.

-Louis

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

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

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 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

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.

-Michele

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

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.

-Pelle

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

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 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

Patient Stories: HCL Treatment

We asked, “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?”

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

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

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

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

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.

-Thomas

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

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.

-Bill

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

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

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 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 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 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

Patient Stories: Relapse

We asked, “Can you describe your experience with relapse?”

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 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

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

Patient Stories: Support and Coping

We asked, “How have you built a support network? Where have you turned for connections or for 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.

-George

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 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

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.

-David

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.

-Louis

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

I am a man of strong faith. I relied on God to give me the peace and strength I needed to get through treatment. Second only to God is my wife and my family, who provided as much support as I could ask. My wife was allowed to stay in my room while I got my treatment. My wife and I reviewed the Hairy Cell Leukemia Foundation website and printed materials, spoke often to my oncologist, searched the Internet, and spoke with the cancer team to learn as much as we could before and after treatment. I participate in the HCL registry, visit the Hairy Cell Leukemia Foundation website regularly, email Foundation staff and look at other peoples' stories.

-David

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 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