Search Results

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.

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.

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. 

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.

Central Nervous System (CNS) Lymphoma

Central nervous system lymphoma is a rare non-Hodgkin lymphoma in which malignant (cancer) cells from lymph tissue form in the brain and/or spinal cord (primary CNS) or spread from other parts of the body to the brain and/or spinal cord (secondary CNS). Because the eye is so close to the brain, primary CNS lymphoma can also start in the eye (called ocular lymphoma). The cancer can also involve the spinal fluid that bathes the spinal cord and brain. This is called leptomeningeal lymphoma. Both primary and secondary CNS lymphomas are rare diseases.

Louise

During the last week of July 2019, Louise, then-two-and-a-half-year-old, developed unusual red dots on her chest and some gnarly, yet explainable, bruises all over her body. We chalked the rash up to wearing an unwashed shirt and the bruises to being an extremely active two-year-old. Then, after her gums bled one afternoon, we hopped on Google and became increasingly concerned with the search results. However, Louise wasn’t acting “sick,” so her parents ignored Dr. Google’s diagnosis.

Joshua

In May of 2016 my husband Josh was experiencing abdominal pains. He was so sick with nausea, vomiting, and diarrhea. He went to see his doctor and was told it was probably a stomach bug but then it continued to get worse. He went back a couple of days later and they did an MRI. On June 2, 2016 we got the results from the MRI and he had a bowel blockage then there showed signs of cancer. After a couple of days of him being in the hospital treating the bowel blockage we finally were told a diagnosis. The cancer Josh had was rare, extramedullary acute myeloid sarcoma.

Edmund

U.S. veterans’ sacrifices can occur on the battlefield … or much later.

Houseboys sprayed Agent Orange on weeds around the Quonset huts of Edmund Montefusco and his fellow soldiers in Korea in the early 70s, but it was decades before Edmund’s rare, slow-growing hairy cell leukemia made itself known.

Elizabeth

On November 8, 2021, I was diagnosed with stage III multiple myeloma (MM), an incurable cancer. Prior to being diagnosed, I thought I was a healthy young woman and was just living life with my children. I would have different pains throughout my body, but I didn't think much about it and would ignore them for the most part. The pains throughout my body were getting more and more frequent, so I went to the ER in October 2021 because I was in pain and could not eat, they said I was possibly having acid reflux and gave me a prescription for nausea.

CML Phases and Prognostic Factors

CML has three phases. The phase of your chronic myeloid leukemia (CML) plays a large part in determining the type of treatment you'll receive. Doctors use diagnostic tests to determine the phase of CML. Determining the CML phase is based primarily on the number of immature white blood cells (blasts) in the patient’s blood and bone marrow. 

Chronic Phase. Most patients are diagnosed with CML in the with chronic phase of the disease.

​People with chronic phase CML:

Amanda

I am now a two-time acute myeloid leukemia (AML) survivor. When I was diagnosed with AML, it was an absolute complete shock. At the time of my diagnosis, I was a stay-at-home mom to my then three-year-old son. In a matter of a few hours and three words, “You have cancer,” my life completely turned upside down.

Resources for Survivors

Use this Survivorship Workbook to collect all the important information you need throughout diagnosis, treatment, follow-up care and long-term management of a blood cancer.

Jeannine

I got started with The Leukemia and Lymphoma Society (LLS) when our good friend, Tim Mauro, ran for Man of the Year and my husband, Larry, was his “campaign manager.” Tim’s father-in law, Bob, was battling non Hodgkin lymphoma. Watching them battle with him and seeing everything they did to help was such an inspiration, and seeing how many people were bonded together, raising money to find a cure, was amazing.

Madeline

My daughter is Madeline Conley.  On January 7, 2014, three days after her 15th birthday,  she was diagnosed with leukemia (AML/MDS).  She was a high school cheerleader and cheer coach who was basically ripped out of her normal active life and immediately admitted to the hospital, where she spent the next five months. It was the scariest thing we've ever been through.

Aryan

Hello, my name is Aryan. I am 13 years old. I was almost five years old when I first got diagnosed with cancer. It started as a normal summer like always, and we were planning to go somewhere. My dad was always traveling because of work, so it was just me and my mom. I would mostly spend time at my grandparents’ house because I could play games with them. One day my dad saw a bump on the back of my head, and our pediatrician told us that it was a lymph node. My pediatric doctor told my parents that it's normal, part of recovery from a fever or cough and to monitor it.

Printable Financial Worksheets

The worksheets below may help when you are thinking about the many financial concerns that come up after you have received a diagnosis of a blood cancer.

Use these worksheets to keep track of questions to ask your healthcare and financial team members. Staying organized helps decrease many financial stressors and allows you to focus on feeling better.

Lilly

Treatment Outcomes

Treatment results and outcomes vary among patients. The advent of the chemotherapy drug cladribine (Leustatin®) has resulted in approximately an 85 percent rate of complete remission (no evidence of the disease) and approximately 10 percent rate of partial response.

Many patients remain disease free for years or decades after treatment with cladribine or pentostatin (Nipent®) and have a normal life expectancy.

Chemotherapy

Chemotherapy is the main treatment for ALL. The phases of treatment include the following:

The first phase of chemotherapy is called “induction therapy.” Induction therapy

Relapsed and Refractory

Refractory non-Hodgkin lymphoma (NHL) is NHL that has not responded to initial treatment. Refractory disease may be disease that is getting worse or staying the same.

Relapsed non-Hodgkin lymphoma (NHL) is NHL that responded to treatment but then returns. 

Katie

Only a couple weeks into my first year of my graduate program, I was diagnosed with acute myeloid leukemia (AML) with FLT3 mutation. I was only 21 years old and my entire world got flipped upside down. My whole life changed and I was about 1,000 miles from home.

Phil

My sweet and wild 3-year-old son, Phil, was diagnosed with B-cell acute lymphoblastic leukemia (B-ALL) in the midst of the holidays in 2019 on December 27. Phil began treatment right away, following a 2½-year treatment protocol for his leukemia type and risk level. With every hospital visit, chemotherapy infusion, medication to take, procedures in the OR, or “job” he was told to do, Phil smiled, he laughed, and he cooperated (with a little encouragement and bribery of course!). There really was something so special about him.

Bryon

In 2017, during a pickup basketball game at the local gym, Bryon Daily was beginning to feel his age, playing against 20-year-olds. A former college track athlete in his early 50s, this fatigue felt different. He also fractured his finger during a routine pass in the game.     Bryon’s primary doctor at Kaiser ordered labs including blood and urine, that showed impairment in his protein levels and referred him to a urologist then a hematologist.

Oya

My three kids are my precious jewels, the reason I get up every morning. As a single parent, providing a good life for them is what fuels my drive to succeed. Little did I know that need to care for them would end up saving my life.

Ava

My name is Lori Timko and my first daughter Ava is an acute myeloid leukemia (AML) survivor! It started in 2009 when she had become sick and the doctors discovered her blood counts were suppressed.