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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Diagnosis | Treatment | Relapse | Support and Coping
Patient Stories: Perspectives
“What would you say to someone who has just been diagnosed? What advice would you offer to them or their families?”
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“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.’’
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“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.”
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“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.”
“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.”
“Stay positive. It could be a lot worse diagnosis! Stay healthy by exercising, eating healthy and staying positive.”
“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.”
“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.”
“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.”
“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.”
“Be patient and get as much advice as possible from doctors who have treated patients with HCL before.”
“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.’”
“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.”
“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.”
“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.”