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Our History
The Leukemia & Lymphoma Society (LLS) was born out of a family's grief following the death of their teenage son. Robert "Robbie" Roesler de Villiers, son of a well-to-do New York family, was only 16 when he quickly succumbed to leukemia in 1944. Five years later, frustrated by the lack of effective treatments for what was then considered a hopeless disease, parents Rudolph and Antoinette de Villiers started a fundraising and education organization in their son's name.
Supportive Care and Disease Complications
Supportive (palliative) care for myeloma helps manage the complications of the disease and the adverse side effects of the drugs used for treatment, including:
Gerardo (Jerry)
I came into this world with a 65,000-mile warranty. During all my life, maybe I had a cold once in a while, some minor stuff, a bit of bursitis, but nothing that you would consider life-threatening at all. One day during a routine exam, I had blood work done. My PCP told me she didn't like my white blood cell count, and it was best to have a specialist look at it. She referred me to an oncologist. I didn’t think of it much, and since I was feeling fine, I thought it must be nothing of consequence.
Ron
This started 11 years ago when my mom was first diagnosed with lymphoma. I wanted to do more and saw the purple team always out running events I was entered into. I wanted to join and did in 2010. I have run in countless events over the years with Team In Training (TNT). Then my mom passed in May of 2017 while I was training for the Walt Disney World event. I was crushed and continued to run in her honor. My mom was supposed to be at the finish line at my 2018 Walt Disney World Marathon Weekend, and it did not happen.
Allie
When I was in fourth grade in 2015, my older brother Nate (a freshman in high school at the time) was rushed by ambulance to the U of M Masonic Children’s Hospital. His spleen was holding 10 times the normal amount of red blood cells. This led to the discovery of his cancer. He was later diagnosed with chronic myeloid leukemia (CML). He missed out on the first month of high school and hockey season, but he was able to take medicines at home so that he could eventually attend the rest of the school year.
Ashley
It started in September of 2020, the start of this new journey in life called acute myeloid leukemia (AML). September 13th was the day that something needed to change. Something was just not right. She just was not herself and couldn’t figure out what was wrong. She knew it was time as a doctor told her to get to the hospital to get some fluids. Fluids were not what was needed, but in hindsight, fluids were just what was needed to find out what the root cause of the problem was. After hours of tests, life changed.
Diagnosis
An accurate diagnosis is one of the most important aspects of a person’s care. A precise diagnosis will help the doctor to
- Estimate the rate of disease progression
- Determine the appropriate treatment.
The doctor will take a comprehensive medical history and ask questions regarding either the absence or the presence of B symptoms. Physical examination will include measurement of all accessible lymph node groups, as well as the size of organs, such as the spleen and liver.
Hair Loss
Drugs that damage or destroy cancer cells also affect normal cells. Rapidly dividing cells, such as hair follicle cells, are the most affected. This is why hair loss (alopecia) is a common side effect of chemotherapy. Hair loss can range from thinning to baldness. It may be sudden or slow. You may also lose hair from other areas of your body such as eyelashes and eyebrows.
Hair usually grows back after treatment ends. The thickness, texture or color of hair may be different when it grows back.
Fertility
“Fertility” describes the ability to conceive a biological child. Human reproduction requires three elements: mature sperm, mature eggs and a person with a uterus to carry the pregnancy and give birth. Some cancers and some cancer treatments affect fertility.
Treatment
The main treatment for AML is chemotherapy given in phases.
Not every child with AML receives the same treatment. Your child’s doctor will tailor your child’s treatment based on the AML subtype and other factors, such as age, health and how the cancer responds to treatment.
Your child’s treatment may include:
Follow-Up Care
Your child will undergo frequent follow-up tests during the first year after treatment, but they will be done less often during the second and third years. Each patient has a different follow-up care schedule. How often your child has follow-up visits is based on your child’s type of AML and the treatments given. Your child’s doctor will let you know the schedule that is right for your child.
Children should visit their pediatrician or doctor at least once a year for a complete physical exam and any additional needed tests. The oncologist should also regularly examine the child.
Myeloma Staging
Doctors use imaging and laboratory test results and bone marrow examination findings to determine the extent of disease. This determination is called “staging.” Staging helps your doctor predict the myeloma's progression and develop a treatment plan.
Myeloma has three stages numbered from 1 to 3. Often doctors write the stage in Roman numerals. You may see stage 1 written as Stage I, stage 2 written as Stage II and stage 3 written as Stage III.
Signs and Symptoms
Essential thrombocythemia (ET) is often detected during a routine blood test before an individual has any symptoms.
The signs and symptoms of ET are linked to high platelet counts that cause the development of a thrombus (blood clot). The symptoms include:
Polycythemia Vera
Polycythemia Vera (PV)- Is one of a related group of blood cancers known as “myeloproliferative neoplasms” (MPNs). Too many red blood cells are made in the bone marrow and, in many cases, the numbers of white blood cells and platelets are also elevated.
- With careful medical supervision, PV can usually be managed effectively for many years.
Treatment for Aggressive NHL Subtypes
Aggressive non-Hodgkin lymphoma (NHL) progresses rapidly. It makes up about 60 percent of all NHL cases in the United States. Aggressive subtypes include:
Dan
My name is Dan. I was first diagnosed with multiple myeloma (MM). After a battery of excruciating, painful biopsies and bloodwork, my doctors prescribed chemotherapy and Velcade once a week, then twice a month. My myeloma numbers were going way down, and my platelet count was diving straight to the bottom, single digits. My routine appointments with my doctor not in my city were going south. The doctor told me to stop taking all my cancer medications. What was happening to me was my MM was completely going into leukemia, a disease called myelodysplastic syndrome (MDS).
Daniel (Lil Sicky)
Cancel blood cancer with web3! Daniel is a 27-year-old lymphoma patient who combined his medical diagnosis and love of digital art into an NFT project supporting The Leukemia & Lymphoma (LLS) patients and their families.
In November 2021, Daniel was diagnosed with stage three nodular sclerosing Hodgkin lymphoma (NSHL). Like so many others during the COVID-19 pandemic, he has been isolated to protect his health and has been unable to work.
Christen
Originally from northern New York, Christen moved to Denver, Colorado, in 2015 after completing her Bachelor of Science of Nursing at Le Moyne College to pursue a career in cancer care. Through a close relationship with her grandparents, she saw how her grandma, a retired registered nurse, graciously cared for her grandpa while he lived with esophageal cancer for close to a decade. The unwavering love, dedication, and courage they shared inspired Christen to seek out a specialty that allowed her to provide compassionate, holistic care to those in need.
Holly
I noticed a bulge on my lower abdomen in December 2022. I had a negative ultrasound and CT. What was initially believed to possibly be a lipoma (benign tumor of fat) was later biopsied, and by May 2023, I was diagnosed with subcutaneous panniculitis-like T-cell lymphoma (SPTCL). It was a rare form of cutaneous lymphoma. I was young, active, and healthy, so I thought.
Olivia
I'm officially nine months in remission and just celebrated my first birthday (27!) since finishing chemotherapy treatment. In January 2022, I was diagnosed with stage IVB Hodgkin lymphoma (HL) after taking almost nine months to officially be diagnosed. Unfortunately, delayed diagnoses are often the frustrating truth for many adolescent and young adult cancer patients. However, during those nine months, I learned invaluable lessons on how to advocate for myself and persevere until I had answers.
Christina
As a Greek Latina indie author, I found it empowering to share my fight with lymphoma through social media and with my current writing. Many have told me that it’s inspiring, and I hope that leads to more attention and support for those fighting blood cancers like lymphoma.
Jakob
I was diagnosed at two and a half years old in December 2003 at Valley Children’s Hospital. Some early symptoms that I had were paleness, unexplained fevers, and extreme fatigue. My babysitter noticed my naps were getting longer and longer as the days passed, and I was taken to my pediatrician because of the previously mentioned symptoms. I was diagnosed with pre-B-cell acute lymphoblastic leukemia (pre-B ALL). My length of treatment lasted three years and two months. I had oral, intramuscular, intrathecal, and IV chemotherapy over the course of the entire treatment.
Tiffany
I was first diagnosed in July 2015. The doctors in Joplin kept saying I had strep (which I did, at first) and it never got better. Appointments after appointments and I kept getting this. Despite the several medicines they had me on, I was still not feeling good. Nothing helped. Finally my friend forced me to go back to the hospital, where I had been four days later, and I was FINALLY diagnosed with acute myeloid leukemia (AML). Unfortunately, they did not have any doctors to treat it there.