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Steven

I have a rare blood cancer. It is Waldenstrom macroglobulinemia (WM), a type of non-Hodgkin lymphoma (NHL), but some doctors say it has the same characteristics as POEMS syndrome.

I have very painful neuropathy, and it affects my legs and feet to the point that some days I cannot walk.

I have a spinal cord stimulator with the battery implanted in my back.

I am thankful to The Leukemia & Lymphoma Society (LLS) for my grants and all the other assistance, especially through this COVID pandemic.

For certain patients with CML, allogeneic stem cell transplantation (the infusion of donor stem cells into a patient) is their best treatment option. However, this type of transplant can cause serious or even life-threatening complications and side effects. In addition, it is often not a good option for older patients or for patients who have other health problems.

Long-Term and Late Effects of Treatment

While treatments for ALL have led to increased survival rates, some may cause significant long-term or late effects. Long-term effects of cancer treatment are medical problems that last for months or years after treatment ends. Late effects are medical problems that do not appear until years, or even possibly decades, after treatment ends.

The long-term and late effects of childhood ALL treatment can include:

Side Effects

Therapy for CLL sometimes produces side effects. Side effects from kinase inhibitor drugs and monoclonal antibody therapy are generally milder than side effects from chemotherapy.

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. Some patients never have side effects.

Side Effects

Chronic myeloid leukemia (CML) treatment can sometimes produce side effects. Most patients can manage their side effects without stopping therapy.

Before you start treatment, talk with your doctor about potential side effects. Drugs and other therapies can prevent or manage many side effects. Many treatment side effects go away or become less noticeable over time.

Treatment Outcomes

AML is a difficult disease to cure, but survival rates for childhood AML have improved over the past several decades. From 2012 to 2018, the 5-year relative survival rate was 69.0 percent for children and adolescents younger than 15 years. However, there is a wide range of outcomes for different subtypes of AML.

For statistics, click here.

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.

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.

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.

Sherry

Laniya

I was truly blessed to be introduced to The Leukemia & Lymphoma Society by workers from Duquesne Light Company as well as my daughter, Ebony Jennings who works as a customer service representative for Duquesne Light Company in Pittsburgh PA. First, I must boast about my granddaughter, Laniya S. White, because she’s a TRUE fighter and never allowed lymphoma to define her.

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.

Carley

Hi, my name is Carley and I am an angel. I was diagnosed with acute myeloid leukemia (AML) in 1995 and I died in 1996. I was 3 ½ years old when I died and I tried so hard to live, but AML was just so terrible and there weren’t a lot treatments back then. My parents were so sad when I went to heaven. I’m still 3 ½ years old because up here in heaven we stay the same age and none of us are sick anymore. It’s truly wonderful up here, but there are still way too many of you coming up here from earth because of AML.

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).

Michael

My story is not so unlike many others. In May 2005, just two months after I retired, I was looking forward to the start of a terrific period of my life spending time with my family, traveling, relaxation and golf That's when I got that dreaded call: “Mr. Blackman, you need to come into my office. We need to talk.”

Ashley

I had acute promyelocytic leukemia (APL) in 2013. I went in to have surgery to remove all four of my wisdom teeth and never stopped bleeding after surgery. The doctor called those miracle teeth instead of wisdom teeth because that is how we found out I had leukemia and they saved my life.

The first few weeks were very difficult in the hospital and my life was literally turned upside down in the blink of an eye. I was a single mom of two young daughters and it was so hard for them to understand how I was suddenly so sick.

Russ

(As told by Russ Parker’s wife Karen A. Parker) In the fall of 2004, Russ was looking forward to a surfing trip to Fiji with his son Rusty and a group of good friends. He was a real estate developer, surfer, soccer coach, swimmer and runner.

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.

middle aged white woman with curly blonde hair and glasses with her chin resting on her hand wearing a pink and purple print shirt

Daniel

My children and I lost their mother and my wife in March 2008, six WEEKS after being diagnosed with acute myeloid leukemia (AML). She was 41 years old. Our children were teenagers. There are no words to describe the pain and grief the three of us went through, a pain that I know we share with others who have lost a loved one through ANY form of cancer. We must rise up together and DEFEAT all forms of cancer. I urge you to help in any way you can!

Kiersten

When I was 38 weeks pregnant, I found a lump on my neck. Doctors couldn't test anything until after my son was born.

In February of 2015, my happy and healthy baby boy, Elliot was born. Just one month later, I was diagnosed with Hodgkin lymphoma. I started chemotherapy in April and after 12 rounds, there was no trace of cancer found in my body.

Now I'm ready to enjoy raising my first child without going through chemotherapy while giving back to The Leukemia & Lymphoma Society!

Shayne

Shayne was diagnosed with T-cell Acute Lymphocytic Leukemia in May 2005 when he was just 18 months old. He endured 42 months of chemotherapy, multiple blood transfusions and several surgeries before achieving remission. Today, Shayne is 10 years old, in the fourth grade and a honor roll student. He is doing great and remains in remission. Shayne loves school and plays basketball and baseball. He also participates in track and field, where he throws both the shot put and javelin.

Robert

I was diagnosed with acute myeloid leukemia (AML) when I was 18 years old the summer before I was supposed to start college. Instead, I spent six months receiving treatment on a clinical trial at CHOP. I was fortunate to have access to outstanding, cutting-edge cancer care and have a good outcome. This experience inspired me to pursue a career in medicine. I’m now a physician-scientist finishing my oncology fellowship at Dana-Farber Cancer Institution. I’m passionate about advancing the field of oncology through research and advocacy.

Leigh

In August 2019, I developed pneumonia for the third time in two years. I had been finding that my ability to fight off illness was not as good as it used to be. Once it got to the point that I was having problems breathing, I decided to go to urgent care. Two years prior, I had been hospitalized for pneumonia, and I wasn’t looking forward to it happening again. I Googled the nearest urgent care, and it was closed. There was only one nearby that was open, but I had never been before.

Kate

On May 17, 2018, our family was thrown into the world of blood cancer. Our family's patriarch, our bonus dad, and our beloved "Candy Boy," as he was affectionately nicknamed by his youngest daughter, found out that he was in the aggressive stages of acute myeloid leukemia (AML).