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Lyndi

In March 2019 I began feeling off...I didn't know what it was. I thought perhaps it was a loss of relationship that broke me to my core, or that fact that an old friend had asked me to be kidney donor for someone I had never know. I agreed to be tested to see if I was a possible match. Fast forward to October when I was tested a possible blood clot that had formed from all of this. I was having continual pain in my right shoulder blade.

Ariana

In the blink of an eye, our lives can crumble underneath us like a tsunami drowning the life out of a city. Many of us unknowingly stand on the edge of an eroding cliff and one slip away from relinquishing our most desired aspirations. At 19 years old, I stood inches away from the edge of that cliff when I was diagnosed with essential thrombocythemia (ET). This was one of the most defining moments in my life that propelled me into a tenacious desire to become a physician capable of fully understanding the fragility of life.

Talking About Cancer

Telling people about your diagnosis is a very personal decision. Some people with cancer choose to tell only close family. Others find it helps to let more people know about their diagnosis. Take some time to consider what and how much you would like to share about your diagnosis and how you want to share this information. By letting friends and family know about your diagnosis, you give them the chance to offer their support.

Here are some tips and things to keep in mind when telling someone about your diagnosis:

Diagnosis

An accurate diagnosis of the type of leukemia is important. The exact diagnosis helps the doctor to

• Estimate how the disease will progress
• Determine the appropriate treatment

After your doctor or clinician takes your blood, he or she sends it to a lab for a complete blood count (CBC), which shows the number of red cells, white cells and platelets in your blood. 

Simantinee

It started when I was in my second year of studying engineering with a small lump on my neck. Dad's suspicion got me to the procedure room the next morning for a biopsy. My father, Dr. Promothesh Roy (Dr. P Roy), a renowned E.N.T surgeon in the North East part of India, didn't feel it was ethical to do an incision on me (hindsight, I wish he did, he probably would have taken out the right sample at that time). Instead, he asked another colleague to do the biopsy. They didn't find anything at that time.

Gwendolyn

Gwendolyn describes herself as a wanderlust who never likes to let the grass grow under her feet. After college, she moved from her hometown in Florida to Houston and spent the next few years moving around Texas for work. She started her new life in Texas where her son, Sterling, was born and raised. She loves traveling, but following a trip to Belize, she started to notice white spots on her skin and other strange issues happening with her health. After doing some research on her own and going to the doctors, she was told she likely had lupus.

Teresa

I was diagnosed in 2009 with chronic lymphocytic leukemia (CLL). Upon diagnosis, perhaps the greatest shock was becoming aware that I knew so little about cancer, so little about the medical system, and how one needs to go about a process of self-education regarding their disease.

My diagnosis occurred at the Simon Cancer Center, a part of the Indiana University Health System. I was fortunate to have a neighbor who is a nurse practitioner at this cancer center. She intervened when she found out that a routine shoulder MRI revealed multiple enlarged lymph nodes.

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.

Lila

It’s January 11th, 2017, well past midnight, probably around 3 am. I am on the side of a mountain in Africa, 1000 miles away from home, in pitch black out, -20º with the winds, and I can barely feel my fingers. All I can see is the headlamp spot of light shining on the trail.

I think to myself, “Well, Lila, maybe this was not your best idea!” I look up and call my teammate in front of me, my best friend Dawn, and say, “Dawn, I am sorry I talked you into this.” She just looks at me, gives a knowing smile, then turns back to the path in front of us!

Jess

Thirteen years ago, my cousin brought me and our family into the The Leukemia & Lymphoma Society (LLS) world. Her friend's dad had lost his battle, and I had just begun mine. In November 2011, I was told I had acute lymphoblastic leukemia (ALL). After being immediately hospitalized, poked, and prodded, I started on a clinical trial following a pediatric protocol with adult doses. It worked! By March 16, 2012, I could say I was in remission. Life was great! No more nausea, vomiting, and general crap feeling. No more pulmonary embolisms from one of the treatments.

Julia

Julia is an eleven-year-old volleyball player, and when she started to experience digestive issues that we couldn't equate to anything, we were afraid that her physical symptoms would keep her off the court for a prolonged period of time.

Jelien

Jelien started showing signs in early July of 2018. She had bruises and cuts that were taking too long to heal. In November, she kept spiking fevers with no other symptoms, and the doctor suggested giving her Motrin and switching to Tylenol. In December, during her well visit, Jelien’s bloodwork came back with slightly low counts, but her hemoglobin was too low. She was admitted to the hospital for a day for observation, and her counts were recovering. She had a follow-up and was cleared.

Clifford

The year 2012 started as one of the best years I could remember. After an arduous effort, I successfully passed step 1 of the United States Medical Licensing Exam (USMLE) which allowed me passage into my third-year medical school clinical rotations. After a wonderful third-year experience, I transitioned to my fourth year and was cruising toward the finish line of my dream to become a physician. Not only that, but after completely overhauling my nutrition and exercise habits, I had lost 100 pounds and was enjoying a newfound freedom that is beyond words.

Drew

One thought that never crossed my mind as a parent was the fear of a cancer diagnosis for my five year old son.

A few months shy of his 6th Birthday, Drew had very typical cold symptoms, but they were persistent and he was extremely fatigued.  After a two visits to his primary care physician, come over the counter medicines and finally a trip to Urgent care, we had a lot of questions but no answers.  My husband took him to his primary care Dr on Monday and we insisted on a blood test. 

Chloe

At the age of 13, I became the youngest stem cell donor at Johns Hopkins Hospital. At 15, I am a Student Visionary of the Year in the 2024 Leukemia and Lymphoma Society (LLS) campaign. LLS has become an integral part of my life over the past two years. In the spring of 2022, the peaceful life of our family was shattered by my mom’s diagnosis of acute myeloid leukemia (AML). Learning that a stem cell transplant was the only cure, I volunteered to donate my bone marrow to her.

Chronic Myeloid Leukemia

• Is a cancer of the bone marrow and blood
• CML is usually diagnosed in its chronic phase when treatment is very effective for most patients
• CML has three phases

Click here to access CML statistics. 

Infections

Cancer patients, especially those undergoing chemotherapy, are more likely to get infections because of their weakened immune systems. Cancer and certain cancer therapies can damage the immune system by reducing the number of infection-fighting white blood cells. Patients with a low white blood cell count are at a higher risk of developing infections, and these infections can be more serious and harder to treat. In severe cases, infections can lead to death.

Pain

A cancer diagnosis does not mean that you will have pain. Still, many people with cancer do have pain at some point. Good pain control is part of proper cancer care.

Managing pain may result in better treatment outcomes, so patients should talk to their healthcare team about their pain right away. Left untreated, pain can:

Dating, Sexuality & Intimacy

As a young adult you may be dating, in a relationship, or married. Cancer can make navigating romantic relationships complicated.

Dating can be intimidating no matter your situation. Remember, every date before your diagnosis probably did not go perfectly. You may have bad dates after your diagnosis as well. You may also meet incredible, new people.

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

Diagnosis

While certain signs and symptoms may indicate that a person has ET, a series of tests are needed to confirm the diagnosis. It is important to have an accurate diagnosis, as it helps the doctor to: 

• Estimate how the disease will progress
• Determine the appropriate treatment

Some of these tests may be repeated both during and after treatment to evaluate its effectiveness.

Treatment

Polycythemia Vera (PV) is a chronic disease: It's not curable, but it can usually be managed effectively for very long periods. The goal of therapy is to reduce the risk of thrombosis and to ease symptoms by lowering the number of extra blood cells. 

Many treatment options are designed to manage PV by lowering hematocrit levels below 45 percent for men and 42 percent for women. Careful medical supervision and therapy is important to keep the hematocrit concentration at normal levels. 

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.

Rick

Rick Ostroff and his family have a legacy of philanthropy with a heartfelt connection to a disease he never had. During the first three years of his life, he spent time on the leukemia floor of Children’s Hospital in Boston but eventually was found to have the critical illness of gamma globulin anemia rather than then-fatal leukemia.

Sofia

Sofia’s story starts in November 2022. Actually, it starts on March 17, 2019, when she was born. She has been my fierce, independent, strong-willed little girl from the get-go. Once she started walking, she was an unstoppable force. Contrary to her cautious, older brother, Sofia seemed fearless. She loved to climb to the top of the playground structure meant for kids twice her age. She loved gymnastics and took after Mommy with her love of the bars, anything she could hang or climb on.