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Follow-Up Care

Click here for information about follow-up care, including what to expect, long-term and late effects of treatment, survivorship clinics, and other resources such as The National Comprehensive Cancer Network (NCCN) treatment guidelines.

Parents of JMML patients are advised to discuss survival information with their child's doctor. The treatment of JMML patients hasn't led to long-lasting remissions in most cases. However, individual factors influence patient outcomes. See Treatment Outcomes.

Watch and Wait

A small percentage of people can manage their hairy cell leukemia with their doctors using a watch-and-wait approach. By using the watch-and-wait method, your doctor can monitor your condition with regular physical exams and lab tests. You won't take any drugs or undergo any treatment during this period.

You may feel uncomfortable because you know that you have cancer, yet you're not being treated right away. Rest assured that the watch-and-wait approach lets you avoid therapy's side effects until you need treatment.

Side Effects

Before undergoing treatment, patients should talk with their doctor about potential side effects. Drugs and other therapies can prevent or manage many side effects.

The side effects of treatment for myelofibrosis (MF) will depend on many factors, including the type of treatment and dosage, the age of the patient and coexisting medical conditions. Therapy may induce

Lymph Node Biopsy

A lymph node biopsy detects cancer cells in lymph nodes and confirms a lymphoma diagnosis. Surgery is used to obtain all or part of a lymph node (or sometimes another tumor site) because it gives the pathologist or hematopathologist more tissue to examine. The tissue examination may detect cancerous tumors, noncancerous masses or infection. Since treatment differs for various types of blood cancers, a precise diagnosis is needed. A second opinion from a pathologist or hematopathologist may be needed to make the correct diagnosis.

How Is It Done?

Milliman Report

The Leukemia & Lymphoma Society (LLS) advocates for improved access to medications for patients.

Blood Cancer and Treatment Options

After your child is diagnosed with a blood cancer, you will work with members of the healthcare team to determine the best treatment plan. Treatment options vary depending on the patient's diagnosis, age, overall health, and other factors. Your child’s treatment plan might include

Fiorella

In September 2017, I was diagnosed with stage 2 Hodgkin lymphoma (HL), which is cancer that starts in the lymphatic system. My oncologist went over my treatment protocol, which included six months of chemotherapy treatments with one of the side effects of that regimen being hair loss. I was set to start chemo the morning after Christmas.  

Rebecca

On September 5, 2019, my world was forever flipped upside down. I heard the words, “This looks like signs and patterns of lymphoma cancer.” I froze at that moment and kept hearing the word cancer over and over again. Tears streamed down my face, and I remember everything else the ER doctor said was just gibberish to me. How could I have cancer? I’m a 26-year-old young adult who just gave birth to a healthy little boy. This could not be right.  

Marisa

Throughout my father’s journey, I was impressed by his care team, the advanced medicine used to treat blood cancer today, the individuals I met, people’s generosity, and the organizations I was introduced to. This journey opened my eyes to various organizations such as Be the Match and The Leukemia & Lymphoma Society (LLS). 

Bishoy

Born in Egypt, at the age of three, me and my family immigrated to the U.S. when I was diagnosed with acute lymphoblastic leukemia (ALL). I grew up in Long Island, New York, where I received treatment for 10 years. On my 13th birthday, I underwent brain surgery and remains cancer-free.

Alice

I was diagnosed with chronic lymphocytic leukemia (CLL). As soon as you learn that you have a form of cancer in your body, read a lot about it. Learn as much as you can about your cancer and how to talk to your doctor. It's up to you; it’s a mind situation. Don’t say, “Woe is me.” Say, “What should I do to take care of myself and enjoy life?” You are in charge, no one else can do it for you.

Jim

My brother Jim was an amazing man. He was a person for whom family was everything. He ran a plumbing business with his brothers and took pride in its success, but he was so much more than his work. We called him “The Renaissance Plumber” because he was so knowledgeable on so many topics ― history, literature, music, politics, sports. He was also a wonderful cook and a genial host. He lived life to the fullest. His leukemia diagnosis was a terrible blow, coming within months of the tragic death of our younger brother.

Joe

After being diagnosed with acute lymphoblastic leukemia (ALL) in March of 2011 when I was only 10 years old, my entire life changed and was put on hold. I went through months of treatments to slow down the cancer, looked for the best possible hospitals in my area, and was able to get a bone marrow transplant in August 2011 from my brother who was a matched donor. I wasn't even close to stopping there. Once I was feeling better, I could do home instruction school from my house so I wouldn't fall behind, and some of my friends were allowed to visit me at home.

John

I first got involved with The Leukemia & Lymphoma Society (LLS) shortly after the passing of my boyfriend, John, in 2020. John "Poochy" fought a very long and hard battle against leukemia that came to an end in August 2020.  I was absolutely devastated and lost in a world without my love.

About two weeks later, a friend posted something about an event called Light The Night (LTN) for LLS, so I checked it out and immediately signed up a team of John and my friends for my local LTN event. We raised over $1,000 in less than 24 hours!

Jack

Jack is an eight-year-old boy in second grade at Gayton Elementary School. He has a passion for all things sports, soccer being his favorite. He also plays baseball, basketball, participates in a swim team in the summer, and has recently taken up tennis. Jack also enjoys doing anything outside whether it’s riding bikes, shooting baskets, sailing, fishing or building forts with his twin sister, Ellie and younger brother, Landon. You won’t find him too far from a Lego set, and will whip up intricate cars, spaceships and villages in no time.

Boyd

Greetings from a friend in Canada! I am a two-time blood cancer survivor and marathon runner all because of the love of friends in The Leukemia & Lymphoma Society (LLS)! I had a life saving stem cell transplant from an American Naval Serviceman named Nathan Barnes who was in Japan when he saved my life. (2011-12). My stem cell transplant was May 2012!! A year after my stem cell transplant a friend took me to Alaska and ran a marathon for me with Team in Training! (2013).

Connor

In 2020, I was asked to join The Leukemia & Lymphoma Society’s (LLS) Student Visionaries of the Year (SVOY) by my friend, Camryn, who is now leukemia-free. Unsure of what LLS was or what I was getting myself into, I hesitated but agreed. Two years later, after my second grand finale event for SVOY Toledo, I was in love. I enjoyed the creativity of coming up with events, I loved the competition, and I loved the people and stories I heard along the way. After graduating high school, I knew that I couldn't stop.

Preston

Preston was a regular 12-year-old kid who loved being active and was obsessed with playing basketball. He got sick in August and was still having a hard time recovering in late September. We realized he needed a thorough check-up and decided to bypass the doctor’s office and go directly to the ER. He had been extremely lethargic and was losing weight. His lips were pale, and his body was cold to the touch.

Katherine

Hello! My name is Katherine and I was diagnosed in January 2020 with stage IV classical Hodgkin's lymphoma. My diagnosis came after months of fatigue and diffuse body pain. Initially I was evaluated for lupus or RA, but those diagnoses didn't quite fit. After discussing with my PCP again and noting a persistent cough, a CT and PET-CT showed diffuse lymphadenopathy and lesions on my liver and spleen.

Emily

Emily, a 32-year-old mother of three young children, was diagnosed with non-Hodgkin lymphoma in August 2013. After a whirlwind of intense treatments over the next two years including chemotherapy, a stem cell transplant and months of hospitalization, Emily relapsed soon after each treatment. In January 2015, Emily was given a devastating prognosis – doctors said she had six months to live. 

Bishoy

Leukemia Survivor Travels From Egypt to Receive Treatment

At just three years old, Bishoy’s parents uprooted him and his family from Egypt to America after he was diagnosed with acute lymphoblastic leukemia. He underwent treatment for most of his childhood until finally receiving a clean bill of health at thirteen years old. 

Alexis

CANCER, that one word that sits like a lump in the back of your throat making you unable to swallow...

I was in sixth grade when my hero, my dad, was diagnosed with hairy cell leukemia.

Over the years, my dad has gone through his fair share of chemotherapy.  Usually after treatment, his cancer became dormant, and then resurfaced a few years later.  The dreadful "process" would repeat itself, getting a little harder each time as his body became resistant to the therapy.

Lillie

My name is Lillie, and I am a Hodgkin lymphoma (HL) survivor. I was diagnosed in 2010 at the age of 22. At the time, I was the mother to two young boys, ages 4 months and 2 years old. I was afraid and didn't know what would happen to me because all I have ever heard about cancer was that a lot of people don't make it. I kept my faith in God and continued to be strong for my children.

Latasha

After a family vacation with her four kids and husband of 20 years, Latasha couldn't eat or hold her head up. After being in bed for almost a month, she thought she had the flu when her doctor broke the news that she had been diagnosed with acute myeloid leukemia (AML) and anemia.

Sal

Meet Sal. Chronic Myeloid Leukemia Survivor. Florida. Sal was diagnosed with chronic myeloid leukemia (CML) before his daughter Olivia celebrated her first birthday. After multiple courses of treatment proved unsuccessful, he underwent a bone marrow transplant in September 2011. Now, almost three years later, Olivia is almost 5 and her Daddy is celebrating his "three-year post-transplant birthday"! Sal is healthy and strong - and has the energy to play and laugh with her. Most beautiful of all, he can now dream of being at her side for all kinds of birthdays to come.