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Finances and Insurance Coverage

Healthcare costs are a key concern for most people with blood cancer. Many patients don't have health insurance, and for others, coverage is limited. If you have health insurance, it's essential that you know what your plan covers and how to maintain your benefits. 

You and your family will need to decide how to pay for treatment while managing household finances. You probably also need to consider additional indirect costs, such as lost time from work, childcare and travel expenses.

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. 

Todd

This cause is dear to me because my grandmother, Anne Zavorskas, passed away several years ago from Hodgkin’s disease--a form of leukemia. Also, many years ago, my mentor’s son, Ryan Hurley, had a recurrence of leukemia, which he was first diagnosed with at the age of three. He died at the age of 19. Unfortunately, leukemia at the time caused more deaths than any other cancer in children under the age of 20.  These instances led me to my desire to donate time and money to this particular charity. I have volunteered my time and fundraising expertise ever since.

Logan

July 3, 2021, was the day that my life changed forever. I had been dealing with odd symptoms for months, and after multiple visits with dismissive practitioners, I finally had the ear of a doctor who believed me. A tumor located in my mediastinum was discovered via a CT scan. This news was devastating. I was due to be married in one month and how could someone who is just beginning her life possibly have something like this happen?

Jared

At 31, I was diagnosed with acute myeloid leukemia (AML). As my career was finally taking off as a celebrity makeup artist and I finally felt “grown-up,” it came to a screeching halt. My life became cancer and getting better. Although I struggled with the isolation, I connected with many other patients via social media.

Dani

My daughter was a professional dancer out on tour when she was diagnosed with acute lymphoblastic leukemia (ALL). She was 25 years old dancing in Detroit, Michigan, at the time, feeling short of breath and having night sweats. Being a dancer, you are in the best shape of your life, and you know when something is going on with your body. So as a mom not knowing what was wrong, I started to panic and told her to start at the urgent care. Two days later I was on a plane heading to Detroit where they told her they thought she had leukemia.

Michael

In 1995, Michael’s daughter Carley was diagnosed with acute myeloid leukemia (AML), M-7 – a  rare form of blood cancer – at just two and a half years old. For the following year, Michael and his wife, Liz, practically lived at Rady Children’s Hospital in San Diego while Carley underwent heavy chemotherapy treatment.

Fely

Hello, my name is Fely Agustin, I am 38 years old and a mother to two teenagers. One is going to be a freshman in college and another a freshman in high school. I am married to a wonderful husband of almost 17 years. I was diagnosed on May 6, 2015 with Waldenstrom Macroglobulinemia (WM).

Matthew

In September, 2012, Dr. Matthew Levine noticed that his regular exercise routine and rotations in the ER were more physically draining than usual. When Dr. Levine realized he could no longer run a mile like he used to with ease, he contacted his physician.

In the interim, Dr. Levine began developing bruises on his body and a throat infection. He knew that after the testing, the diagnosis would not be good. On Monday, September 17, 2012. Dr. Levine learned he had acute myeloid leukemia (AML).

Steve

I was diagnosed with stage 4 follicular lymphoma on May 16, 2018, a date I will never forget. The cancer was already in my bone marrow and when I asked my doctor how long would I live if I did nothing, she said about 90 days. Dr. Amy is scary smart and I told her I needed to attend my son's wedding in a few months; let's see if you can get me there, even if it is in a basket. I started R-CHOP chemo treatments almost right away. The side effects, discomfort and pain were a 9 everyday. Shockingly, for the weekend of the wedding my pain & discomfort dropped down from a 9 to a 1.

Louis

Louis had been on a journey to achieve greater health. For 10 months, he had been on a healthy diet and exercise program and had lost 80 pounds. His doctors were pleased and he was able to stop taking most medications he was on.  However when he went for an annual physical he was diagnosed with chronic myelogenous leukemia (CML) at only the age of 33.

Myra

At age 2, Myra began having fevers and joint pain. Her parents took her to their pediatrician where she had bloodwork done. The results came back normal except it showed she was a little anemic.

“Myra never had any bruising or any issues other than the recurring fever,” according to her father.

Zainab

I'll never forget the call I received on April 17, 2017, when my then-three-year-old niece, Zainab, was diagnosed with leukemia. At the time, she was a bubble-blowing, pose-striking, diva princess. But for the next 2½ years, she became a tiny superhero whose mission was slaying the evil villain cancer. I've always felt a special connection to Zainab starting from the day she was born ― on my birthday, which I also happen to share with my younger sister Noura.

Marlana

My pawpaw, Archie, raised me my entire life. He was in the Air Force and stationed in Korea. He didn't have to, but he took me in as his own. And when I was 11, they got legal guardianship of me. My Dad was still in my life because he was raising my little brother, so I saw him often. but he just didn't raise me. Sometime around 2010, my Pawpaw was diagnosed with non-Hodgkin lymphoma (NHL). He went through treatment and chemo which caused him to go into remission.

Joan

In October 2014, I was handing out candy to my neighborhood’s tiny ghouls and goblins, but the scariest thing that Halloween was a phone call from my doctor. My heart pounded as the doctor told me I had myelodysplastic syndrome (MDS), a rare blood disorder in which the bone marrow stops functioning properly. My current MDS diagnosis is refractory anemia with ringed sideroblasts. My treatment consists of red blood transfusions and Reblozyl® injections.

Steven

In 2017, I was 52 and in pretty good shape. I was at the gym working out, and after a certain lift, I could not get off the bench by myself. After being helped up, I somehow drove myself home. The next morning, I could not get out of bed without my wife lifting me up. We went straight to the doctor and got an MRI. Then we got the news “you have cancer,” and it is eating your vertebrate in your neck. I was sent to a spine and neck specialist and also to a cancer doctor to find out what kind of cancer. Multiple Myeloma (MM) was the diagnosis.

Penny Man (Jonathan)

My name is Jonathan, but I really like to be called "The Penny Man.” I have been collecting pennies for over 15 years and then donating them to The Leukemia & Lymphoma Society (LLS). I first started collecting in high school in 2006 when a classmate of mine passed away from leukemia. My teacher, Mrs. Jean Cassetta, started a schoolwide campaign in partnership with LLS in memory of our friend Andrew, and I never stopped saving pennies since.

Krista

Where do I begin? I am a 2x acute myeloid leukemia (AML) survivor with being diagnosed for the first time in 2008 at the age of 38. My family and I received amazing support through The Leukemia and Lymphoma Society (LLS) both emotionally and financially with the co-pay program, webinars, and information guides.

Mollie

Although I was a cancer patient many years ago, survivorship is a journey I take every day. Ever since my diagnosis, I’ve spent my free time engaging with the childhood cancer community and learning more about myself.

Teri

I was first diagnosed with a myeloproliferative neoplasm (MPN) called polycythemia vera (PV) in 2012. I must admit, I was a bit overwhelmed when they said the “C” (cancer) word and then the “R” (rare) word. I have been living with a handful of rare diseases for some time and now a rare cancer. At that time, there was limited information. I started to research MPNs, attended some conferences, talked with a social worker (Amy is my hero) at The Leukemia & Lymphoma Society (LLS), and connected with the MPN Research Foundation and MPN Advocacy Foundation.

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.

Radiation Therapy

This treatment, which uses high-energy rays (x-rays) to kill cancer cells, is used selectively in myeloma treatment to kill myeloma cells. For example, radiation therapy is the main treatment for solitary plasmacytoma and for carefully selected patients whose bone pain does not respond to chemotherapy. Radiation therapy may, however, be impractical if there are widely distributed areas of painful bone involvement in the body.

Stem Cell Transplantation

Allogeneic stem cell transplantation has been used to treat and sometimes cure chronic myelomonocytic leukemia (CMML) patients. However, because of the high, sometimes life-threatening risks associated with stem cell transplantation, doctors rarely use it in elderly patients or patients in poor health.

End-of-Life Care

Awareness and discussion of end-of-life issues is an important aspect of care for any serious illness and helps improve quality of life. Talk to your child’s healthcare team about treatment goals and any concerns you have related to prognosis, treatment outcomes and end-of-life care.

Fannie

I was diagnosed in August 2018 with stage 4 Hodgkin lymphoma (HL), and at that time, I was seven months postpartum with my daughter who was only 7 months old, and my son was 8 years old. It was a surprise to hear that I had stage 4 cancer! But after my oncologist explained to me what HL was and what the treatment was, I knew that it was treatable. I started chemotherapy in October 2018, and after a month of chemotherapy, I relapsed because my insurance company was giving me a difficult time with chemotherapy treatment approval.