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Geoffrey

My wife was diagnosed with acute lymphoblastic leukemia (ALL) in November 2014. She went through a three-year protocol of a steroid regimen followed by one year of oral chemotherapy. She was pronounced in remission after one segment of chemotherapy but went through the entire protocol. Living in Chicago at the time, she was treated at Northwestern under Dr. Diner, a specialist in her type of ALL.  Then in 2020, we moved to North Carolina and were referred to Dr. Kataryna Jamieson at UNC Hospital for what we thought would be a yearly or biannual checkup. In July of 2020, Dr.

Joy

My mother, Joy, was diagnosed in 2015 with follicular lymphoma (FL) in her stomach. She went into remission after chemo treatment. Six months later, it came back, this time more aggressive and on the outside of her organs. They did CHOP chemo and then a bone marrow transplant. She went into remission for a second time. Eight months later, she wasn't feeling spectacular, so we took her back to the doctor. She was diagnosed with large B-cell lymphoma (DLBCL). The mass was in her uterus and had grown so fast and massive that it blasted through her bladder.

Gil

I was sitting alone in a stark, clean examination room on September 16, 2021, at the Dana Farber Cancer Institute (DFCI) in Brookline, Massachusetts when my oncologist walked in. I called my spouse and son on my cell phone so they could hear the results.

Laura

My mom was diagnosed with non-Hodgkin lymphoma (NHL) in August 2022. Over the course of a year, she underwent chemotherapy, caught COVID-19, underwent CAR-T therapy, and fought through many respiratory infections. My mom was a fighter. She wasn’t going to let a cancer diagnosis slow her down. She wanted to live. Between me and my sisters, we all took turns taking my mom to all her appointments.

Jude

At age five, on my fourth day of kindergarten, I was diagnosed with acute lymphoblastic leukemia (ALL). With the 85% survival rate for ALL, I was confident I would go through this for the next three years but one month later after the induction period, my doctor told us I didn’t respond and I may need a bone marrow transplant.

Relapsed and Refractory

Some patients have residual leukemia cells in their bone marrow even after they receive intensive treatment. In these cases, the disease is referred to as being “refractory” (or “refractory ALL”).

Other patients achieve remission but later have decreased numbers of normal blood cells and a return of leukemia cells in their bone marrow. This is referred to as a “relapse” of the disease (or “relapsed ALL”). 

Kate

"You have cancer" is one of the scariest things you might ever hear. When Kate was diagnosed with non-Hodgkin lymphoma (NHL), she initially thought about how she wasn't strong enough and how she wasn't ready to die. Then she calmed down and told herself she didn't really have a choice.

"You have to do this; you have to be strong."

Refractory and Relapsed Childhood ALL

Most children with ALL are cured with standard chemotherapy treatments. But about 15 percent of young patients have ALL that returns after remission. This is referred to as a “relapse” of the disease (or “relapsed ALL”). Some children are unable to achieve a remission because their cancer does not respond to treatment. In these cases, the disease is referred to as “refractory” (or “refractory ALL”).

Kabir

Kabir is an eight-year-old boy who is very affectionate, loving, and sweet. He has endless interests and loves dogs, superheroes, ponies, mermaids, magic shows, zoos, roller coasters, rock collecting, traveling, eating at "fancy" restaurants, watching television and movies, building Legos, and playing video games. Before his diagnosis, Kabir also enjoyed swimming and Brazilian Jiu Jitsu. He is caring by nature and an amazing older brother to his younger sibling, Ayaan.

Role of the AML "Immunome" in response and failure of chimeric antigen receptor T cell therapy

Most patients with acute myeloid leukemia (AML) are not cured with chemotherapy alone, and most long-term survivors of AML have undergone an allogeneic stem cell transplant (also known as bone marrow transplant). The outlook is quite grim for patients whose AML relapses after transplant. We have developed a new type of treatment for AML called chimeric antigen receptor (CAR) T cells for these patients. The goal of this project is to investigate how to improve CAR T cells for AML.

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. 

 

Where to Start

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.

Lauryn

After visiting Fiesta Texas on July 11, Lauryn complained about pain in her lower right leg. She had been complaining of pain and swelling in her lower right leg since April when she accidentally caught her leg in the car door. We took her to an orthopedic urgent care center when she continued to complain of pain while she was walking. After x-rays did not show a fracture, she continued to have a bump on her lower leg and the pain increased over time. I took her back to the orthopedic urgent care on July 12. The same P.A.

Glenis

The body is ultimately wise. Through this most recent medical ordeal, I learned to listen to what my body was telling me. In 2018, I felt symptoms above and beyond the fibromyalgia ailments that I had been plagued with for 25 years. I had unusual inflammation despite eating healthy and walking on a regular basis. I developed an unrelenting throb of pain in my lower back. My internal medicine doctor at the time dismissed my complaints.

Jack

On October 19, 2018, after complaining about excruciating pain in his back, we took our 16-year-old son Jack to see the pediatrician. The doctor checked him out and told us to immediately get him to the Children's Hospital of Colorado and go to the 7th floor to see Dr. Maloney. Not paying attention and thinking nothing was wrong, we didn't notice that the 7th floor was the Center for Cancer and Blood Disorders. We met with doctors, had a blood test done, and they came back with the dreaded words, "Your child has cancer." Specifically, he had acute lymphoblastic leukemia (ALL).

Treatment

It's important that your doctor is experienced in treating patients with myeloma or works in consultation with a myeloma specialist. This type of specialist is usually called a hematologist oncologist.

Types of Treatment for Myeloma

Your treatment may include one or more of the following therapies:

A phase 1 study of VIPER-101, a CD5-edited dual population chimeric antigen receptor cell therapy, to enhance immunotherapy against T-cell non-Hodgkin lymphoma

In October 2023, LLS made an equity investment in Vittoria to "Support Clinical Development of VIPER-101, a CAR-T Cell Therapy for T-cell lymphomas."

Tatijane

On February 19, 2021, I was diagnosed with acute lymphoblastic leukemia (ALL), both B and T cells, and given six to eight weeks to live. I was 24 years old. I was diagnosed alone in the ER because of COVID-19 protocols and unable to see my family and friends in person for a week or two because of testing, port placements, and biopsies. It was like an earthquake that shook up my life as well as all my loved ones’ lives, and all I wanted was to hug my mom.

Paul

I have had the opportunity to know Paul since he was diagnosed with B-cell lymphoma (BL). Paul has an energy that makes it so you will like him instantly and this is exactly what happened. I have had my share of patient's lose their battle over the years so I am very cautious now of who I allow in my bubble. I am certain that even if I had not allowed Paul and his wife Carrie into mine they would have found a way in anyhow. Paul sailed thru R-Chop like a champ. I introduced The Leukemia and Lymphoma Society (LLS) and the work that you do for the Cohen's at this time.

Kayli

My daughter Kayli is a remarkable 22-year-old, six-time cancer survivor of leukemia who is currently undergoing treatment for a relapse of acute lymphoblastic leukemia (ALL) that has been recurrent in her central nervous system (CNS) since she was 8 years old. We are hopeful that the upcoming bone marrow transplant will provide a much-needed, life-saving cure for Kayli.

I am an RN and a single mother of five daughters and one son. My only son, Kayli's brother, Markai, is a full match and will be her bone marrow donor. He just graduated high school in May.

Kristen

In the fall of 2012, Kristen Comer noticed her energy level wasn't as high as it had been, but she thought nothing of it. It wasn’t until the fall of 2013 when she had unidentifiable bruises on her body and no change in her energy levels, that her general practitioner drew labs to determine a diagnosis. After three panels of blood work, Kristen was diagnosed with chronic myeloid leukemia (CML) on December 31, 2013.

Kris

Every survivor has a story. Mine started out on my way home from work one sunny June afternoon in 1983. My mom came to pick me up and we were riding in the car. I still remember the feeling of freedom as the wind blew through my long brown hair. Spring was always a season of rebirth to me after the long New York winters. I closed my eyes and smiled, completely unprepared to hear the next words spoken to me. “What’s that on your neck, honey”? Those words came from my mother as she noticed the lump embedded in my collarbone.

Kevin

My senior year of high school was supposed to be the best year of my life. College applications, celebrations, and memories with friends—I had it all planned out. But life had a different path in store for me. At the very start of my senior year, I was diagnosed with acute lymphoblastic leukemia (ALL), and just like that, my world changed forever.

Kim

On February 22, 2011, our 2½-year-old Abigail just stopped walking. We were baffled and took her to the pediatrician who sent us to the hospital to have her tested for a joint infection. After several hours at the ER, she was diagnosed with acute lymphoblastic leukemia (ALL). That was not what we had expected, and we worried about her identical twin as well. Eight months into Abigail’s treatment, in October of 2011, her identical twin Natasha was also diagnosed with ALL.

Kari

I am writing this in 2022, but I never would have believed when acute lymphoblastic leukemia (ALL) struck my daughter in 2013, that it would feel like we were back at step 1.

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: