Search Results
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.
Use the Survivorship Workbook to collect all the important information you need throughout diagnosis, treatment, follow-up care and long-term management of a blood cancer.
Follow-Up Care
All children treated for ALL need to receive follow-up care. Follow-up care involves regular medical checkups after your child has finished treatment. These checkups may include blood work as well as other tests to check for a possible relapse of the cancer. These visits are also a time for doctors to test for other physical or emotional problems that may develop months or years after treatment. Even if your child is feeling entirely well, it is very important to keep the follow-up appointments.
Jude
From 2013 to 2014, after he was diagnosed with acute lymphoblastic leukemia (ALL), Jude endured four cycles of intense chemotherapy, lengthy hospitalizations, difficult side effects, and months of home isolation. Jude's younger brother, Finn, was born in May 2014 in the middle of Jude's chemotherapy cycle. In August 2014, his family finally celebrated as Jude finished the more difficult part of treatment.
Lauren
It was last July, and I was just a regular Jersey girl. I was a 41-year-old wife, mother of two, physical therapist assistant just living a regular, normal life, or so I thought. I was just returning from a vacation in Puerto Rico, celebrating my brother's 50th birthday, when I fainted on the plane and had to have an emergency visit upon landing.
Daniel
My son was diagnosed with acute lymphocytic leukemia (ALL) in 1992 at 7 years old. Needless to say, it was a devastating blow to our family, and we were so scared! I had just gone through cancer illnesses with two other members of my family and knew how this diagnosis went. But my son, I never thought in a million years!
Sophie
I was diagnosed with stage 3B Hodgkin lymphoma in February 2013. I was having unusual things going on with my body such as itching, weight gain, swollen lymph nodes and heavy breathing. As these symptoms continued, it led me to go see my general practitioner, who misdiagnosed me with scabies (a form of bed bugs). After another week of being miserable, and no change in my symptoms, I decided to go see my dermatologist. When I went in he knew right away something wasn’t right and sent me to get blood work done immediately.
Lawrence Paul "LP"
In July of 2017, our world was turned upside down. Our son, Larry Paul (LP), was experiencing back pain and was extremely tired. After multiple trips to doctors and ER visits over seven days, he was taken down to UMMC in Baltimore and diagnosed with T-cell acute lymphoblastic leukemia (T-ALL). After a 28-day battle of fighting ferociously, he passed away. When he was sent home from the hospital after 24 days, the doctors were convinced that he was going to beat this. The toxic chemo created a massive pulmonary embolism that went undetected.
Signs and Symptoms
Signs and symptoms are changes in the body that may indicate the presence of disease. A sign is a change that the doctor sees during an exam or in a laboratory test result. A symptom is a change that a patient can see and/or feel.
It is common for a child with ALL to feel a loss of well-being because of the lack of normal, healthy blood cells.
Symptoms of a low red blood cell count (anemia) include:
Ernest
During my summer internship at General Motors in Flint, Michigan, I suddenly started feeling extremely restless. Soon after a lump the side of a golf ball appeared on my neck and I got an extreme sore throat. A doctor told me I just had a sinus infection and gave me Theraflu.
Santino
I know the pain of being told that you have cancer twice, but I also know the joy of being told that you have beaten cancer twice. I write this message to bring encouragement and to instill a fight in people who have had a relapse of cancer. Being told once that you have this disease is already heartbreaking, but to be told that it came back and you will need chemo again is soul-crushing.
Amy
I am a stage IV non-Hodgkin lymphoma survivor (NHL). The diagnosis came as a complete shock since I was a relatively healthy, active young adult working and enjoying life with family and friends. With a family history of breast cancer, I was advised to start having screening mammograms in my 20s. After a few clear screenings, I approached my 2018 screening and annual health visit to my primary care doctor's office with optimism. Within 48 hours, I received the dreaded call many women fear ― abnormal results.
Signs and Symptoms
Signs and symptoms are changes in the body that may indicate disease. A sign is a change that the doctor sees during an examination or on a laboratory test result. A symptom is a change that a patient can see and/or feel. A person who has signs or symptoms that suggest the possibility of leukemia is usually referred to a specialist. This is a hematologist-oncologist. A hematologist-oncologist is a doctor who has special training in diagnosing and treating blood cancers such as leukemia, lymphoma and myeloma.
Side Effects
Cancer therapy for hairy cell leukemia can sometimes produce side effects. For most patients, treatment side effects are temporary and go away once therapy ends. For other patients, side effects can be more severe, sometimes requiring hospitalization.
Before you undergo treatment, talk with your doctor about potential side effects. Drugs and other therapies can prevent or manage many side effects.
Diagnosis
Diagnosing juvenile myelomonocytic leukemia (JMML) usually involves ruling out other similar diseases such as chronic myelomonocytic leukemia and chronic myeloid leukemia, especially if your child is older than 6 years. Doctors commonly use blood tests and bone marrow tests to diagnose JMML.
The tests used to diagnose JMML include:
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?
Clinical Trials
Taking part in a clinical trial may be the best treatment choice for some blood cancer patients. There are trials for patients at every stage of treatment as well as those in remission. Virtually all of today's standard treatments for cancer are based on previous clinical trials.
Clinical Trial Support Center
Work one-on-one with an LLS Clinical Trial Nurse Navigator who will help you find clinical trials and personally assist you throughout the entire clinical-trial process.
Will
I am a cancer mom. I WAS a cancer mom. My youngest son, Will, was diagnosed with Hodgkin lymphoma (HL) at age 19 in April of 2019. He, his dad, and I were beyond shocked when we heard the news that the swollen lymph nodes that came up out of the blue one March morning were indeed HL. We didn't really know anybody personally that had it. We didn't know what exactly all the words meant at that moment in time, but we knew it wasn't what we had planned for our youngest son.
Rylie
My name is Rylie York, I am 20 years old and I'm currently a sophomore at Baylor University. I'm originally from Round Rock, Texas and I am a patient at Texas Children's Hospital in Houston, Texas. I was diagnosed with stage 4 Hodgkin’s lymphoma at 18 in the middle of my senior year of high school. I have relapsed twice since then and completed my bone marrow transplant this past August and September.
Jonathan
I was diagnosed with B-cell acute lymphoblastic leukemia (ALL) on July 26, 2019, and even without the involvement of a pandemic, I imagine that’s reason enough to believe that to me 2018 seems like a lifetime ago. Still, I can remember it well enough: A wide-eyed younger version of me arrived at college orientation, somehow simultaneously thrilled to begin a new chapter of his life and paralyzingly terrified of the imminent unknown.
Elisa
I was diagnosed with stage IV Hodgkin lymphoma (HL) in April 2022 at 27 years old. After months of debilitating symptoms and a week-long hospital stay, I finally had an answer as to what was going on with my body. I was relieved to have an answer, but "cancer" was the last thing I expected. Ironically, after my diagnosis and first chemotherapy infusion, I felt better than I had in months. I didn't feel like I had cancer; the only reminders were a few enlarged lymph nodes and the mediport protruding from the right side of my chest.
Young Adults
Don't miss Voices of Strength, a special edition in the September issue of Elephants and Tea Magazine, sharing stories about advocacy, mental health challenges and resilience from young adult blood cancer patients.
Clinical Trials
When it comes to finding the right treatment for your child's cancer, a clinical trial may be an option. Your child will have access to new or improved therapies under study and not yet on the market. Discuss with your child's doctor the possibility of participating in a clinical trial, where treatment is administered in a safe, closely monitored environment.
Click here to read more about clinical trials.
Clinical Trials
Taking part in a clinical trial may be the best treatment choice for some acute lymphoblastic leukemia (ALL) patients. Clinical trials are under way for patients at every treatment stage and for patients in remission. Today's standard treatments for cancer are based on earlier clinical trials. The Leukemia & Lymphoma Society continues to invest funds in ALL research.
Click here to read more about clinical trials.
Follow-Up Care
Follow-up medical care is important for every Hodgkin lymphoma patient. Follow-up care helps the doctor monitor you to see if disease has recurred or relapsed, or to see if more treatment is needed. Talk to your doctor about how often to have follow-up visits and what laboratory tests, scans, or other imaging you need. It is important to get a record of your cancer treatment including the drugs you received so that your doctor can follow up on specific long-term effects that may be associated with your treatment.