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Michele
The news came that I had been dreading after three days of being hospitalized. Finally, they would tell me my diagnosis. Why my blood counts were critically low. Why the pain in my right leg was excruciating. Why morphine didn’t touch that pain. Since arriving at the hospital, my inner dialogue was on repeat, “What’s wrong with me? Somebody please just tell me everything is going to be fine."
Treatment
It's important that your doctor is experienced in treating patients with hairy cell leukemia or works in consultation with a hairy cell leukemia specialist. This type of specialist is usually called a hematologist oncologist.
Types of Hairy Cell Leukemia TreatmentFor many people with hairy cell leukemia, starting treatment helps them focus on moving ahead and looking forward to their disease's remission.
Several types of approaches and treatment are used for adults with hairy cell leukemia, some at different stages:
Sadie
Diagnosed with leukemia at age 2, Sadie survived thanks to her remarkable treatment. A sunny and positive personality, Sadie today pursues her ambition as a dragster driver and is a living example of hope to other cancer patients.
Aliyah
My name is Aliyah and I'm 19 and I am an acute myeloid leukemia survivor! Please watch my seven minute video of my journey: https://youtu.be/uxJs7N51BmQ Aliyah Petrone
Clinical Trials
Taking part in a clinical trial may be a treatment choice for some hairy cell leukemia patients. Clinical trials are under way to develop treatments that increase the remission rate of hairy cell leukemia or cure the disease. Today's standard treatments for cancer are based on earlier clinical trials. The Leukemia & Lymphoma Society continues to invest funds in hairy cell leukemia research.
Janet
I was diagnosed with acute myeloid leukemia (AML) at the age of 28, and our firstborn son was four months old. I am currently a 36-year survivor, married 41 years with four sons, four daughters-in-law, and eight grandchildren.
Sandra
I'm a survivor of multiple myeloma and MDS. Now I just want to raise awareness for the cause its seriousness.
Having both these diseases is tough, but I'm trying to take it all in and The Leukemia & Lymphoma Society offers wonderful support.
Childhood and Adolescent Blood Cancer Facts and Statistics
Childhood and Adolescent Blood Cancers- An estimated 54,868 children and adolescents younger than 20 years in the US are living with or in remission from leukemia, lymphoma, myeloma, myelodysplastic syndromes (MDS) or myeloproliferative neoplasms (MPNs).
- Leukemia is the most common cancer diagnosed in children and adolescents younger than 20 years and accounts for 25.4 percent of all cancer cases in this age-group.
- From 2016 to 2020, the most recent 5 years for which data are available, leukemia and lymphoma accounted for 38.4 percent of all cancer types in
Lindsay
Hello, my name is Lindsay. I was recently diagnosed with chronic myeloid leukemia (CML).
Among being diagnosed with this my husband and I have been going through infertility as well. It is helpful to connect with others going through the same process that we are.
God bless!
Tracy
In 2001 at the age of 31, I was living in Maui working at the Ritz Carlton and began to feel sick. I had a rash on my hand, was tired, losing weight, and just did not feel well. I had been healthy all my life so thought it would pass.
Marty
My story is very unique. Christine and I got married in July of 1979. In August she was diagnosed with acute lymphoblastic leukemia (ALL). As we all now know, the prognosis at that time was not the best for an adult with ALL. There was a new procedure called a bone marrow transplant. Chris was not a candidate and seven months after we were married, she passed away at the age of 26.
Jaiden
My son, Jaiden was diagnosed with T-cell acute lymphoblastic leukemia (ALL) on November 21, 2018. Prior to his diagnosis, Jaiden was a very well-rounded athlete and he played almost every sport, until one day during a football he fractured his arm and was done for the season. Needless to say, he was in a cast for 6 weeks.
Amos
Amos is 6 years old and has been in treatment for leukemia since September 2017.
Three weeks after his very first day of kindergarten, he was diagnosed with Acute Lymphoblastic Leukemia (ALL). Amos spent a month in the hospital for the initial induction phase of his treatment, and then was homebound for 9 more months while he continued his intensive chemotherapy regimen. His immune system was so compromised that he could not attend school or be in public spaces. He received tutoring from a teacher twice a week at home.
Helena
In 2018, a few days before Thanksgiving, Helena noticed something. She was having difficulty lifting speakers at her gigs. She became winded after only a few songs. Even the most minute tasks became daunting.
Lauren
In the fall of 2022, my cousin lost her battle with leukemia. She was the most lovely (a word that makes me think of her) and kind person, and at the memorial service, Kate's sister said Kate had said, "There is nothing better than to be young and to run." This sentiment stuck with me for a long time as I am also a runner, and I started thinking about how I could honor her in my own way. The family had directed those who wished to donate to The Leukemia & Lymphoma Society (LLS), so I researched and discovered Team In Training (TNT).
Terry
My life has been an interesting journey. In April 2019, I lost my wife of 20 years, and in August 2020, I lost my older brother to leukemia. My wife was 50, and my brother was 64. After several months of excruciating pain in my abdomen, I was finally diagnosed with non-Hodgkin B-cell lymphoma (B-NHL) in May 2021. I was 58. Upon entering the hospital in June for my first round of chemo, I was diagnosed with acute renal failure. After several days of treatment, I finally started my chemotherapy. I was lucky, or so I thought, no radiation for me.
Sahara
In August 2021, I was diagnosed with stage IV Hodgkin lymphoma (HL). I am now cancer-free. The Leukemia & Lymphoma Society (LLS) helped me tremendously throughout my process. I had the privilege of raising money for LLS through an Instagram campaign by sharing my story online.
Relapsed and Refractory
Some patients' cancer returns after a successful course of treatment. This is called a relapse.
Some patients' cancer does not respond to treatment. This is called refractory chronic myelomonocytic leukemia (CMML).
If you have relapsed or refractory CMML, talk with your doctor about whether taking part in a clinical trial may be a good option for you.
Diagnosis
Diagnosing acute lymphoblastic leukemia (ALL) and the ALL subtype usually involves a series of tests. An accurate diagnosis of the subtype is important. The exact diagnosis helps the doctor
- Estimate how the disease will progress
- Determine the appropriate treatment
In children, a diagnosis of ALL generally requires a finding that 25 percent or more of the cells in the bone marrow are leukemic blasts of lymphoid origin (lymphoblasts).
Relapsed and Refractory
Some patients still have leukemia cells in their bone marrow after hairy cell leukemia treatment. This is called refractory leukemia. Some patients have a return of leukemia cells in the marrow and a decrease in normal blood cells after remission. This is called a relapse.
Drug therapy that can be used to treat relapsed or refractory HCL includes:
Kelly
In January 2020, I was a 21-year-old full-time pre-medical student diagnosed with Stage 2E Nodular Sclerosis Classical Hodgkin lymphoma, about three weeks after getting engaged to the love of my life and primary caregiver, Alex. We put our entire lives on hold to begin this battle, but we had a huge support network that cheered us on with the slogan, "Let's Get Excited." I was treated for my cancer at Mercy Hospital in Springfield, Missouri, where Dr. Jessica Snider & Dr. Kimberly Creach successfully cured my cancer.
Sarah
I was diagnosed with B-cell acute lymphoblastic leukemia (B-cell ALL) in October 2020 at the age of 38. It was a shocking diagnosis. I started feeling bad in September with extreme fatigue and some body aches, nothing terribly alarming. I'm a busy wife and mom of two young kids (ages 2 and 8 at the time of diagnosis) with a full-time job and two new puppies. I figured I was just worn out from everything. I had routine bloodwork scheduled for my annual physical. When my primary care doctor received the results, he called and asked me to go to the emergency room.
Hannah
My name is Hannah Gallant. I am an 11 years old from Quispamsis, New Brunswick Canada. In August 2016, after several trips to the doctor and the hospital because I wasn’t feeling well, my parents brought me to the hospital for blood work. I wasn't worried, because I thought it was just growing pains. We got the results that same day, my parents found out it was a form of leukemia called acute lymphoblastic leukemia (AML). They didn’t tell me until the final diagnosis took place at the IWK. I was very worried, and even though I didn't know what leukemia was.
Heather
The Leukemia & Lymphoma Society’s Light The Night Walk serves as an inspiring, empowering and comforting event, made possible by those who share, remember, and advocate for the fight against cancer. Each year, we here at LLS are graced with countless stories that demonstrate and display the spirit of this event. Heather Lee’s story is one of them.