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Watch and Wait
Not all CLL patients need to start treatment immediately. “Watch and wait” is a valid treatment approach that means your doctor will watch your condition but not give you treatment unless you have signs or symptoms that appear or change. This approach includes:
Other Disease Studies
Another type of study that blood cancer patients and their relatives can participate in is a nontherapeutic study. Nontherapeutic studies aren't considered clinical trials because they don't involve the study of new diagnostics or treatments for diseases. Instead, they're developed to gain a better understanding of disease-incidence patterns or the consequences of specific treatments for a specific disease.
In all cases, you should be asked to sign a consent form that defines the study's purpose and what's expected from the participants.
Megan
I am a 12-year-old girl who likes to play soccer and basketball, and I am in 7th grade. I was diagnosed with myelodysplastic syndromes (MDS-EB) with monosomy 7. It is a blood cancer similar to leukemia. It is extremely rare for pediatric patients to receive this diagnosis, between 1-4 children out of every million.
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.
Ariel
I was diagnosed with acute promyelocytic leukemia (APL) on January 24, 2019. I hadn’t been feeling well for a while. I was having very odd symptoms. For example, I was having joint pains, I kept hearing this whooshing noise, my gums were bleeding, and the biggest symptom was I would get out of breath so easily. Walking up the steps of my apartment building felt like running a marathon. I went to an urgent care clinic and described these symptoms, and the doctor gave me an antibiotic and sent me home. I’ll never forget his face before he discharged me. I could see he was unsure.
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.
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.
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.
Side Effects
The side effects of treatment for essential thrombocythemia (ET) will depend on many factors, including the type of treatment and dosage, the age of the patient and coexisting medical conditions.
Management of side effects is important. Patients should discuss any concerns about side effects with their doctor. Most side effects are temporary and resolve when treatment is completed
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.
Complications of CLL or CLL Treatment
InfectionPeople with CLL are more likely to get infections.
Jane
In 2008, I retired from teaching art, mostly because I was feeling tired all the time and didn’t want the program I was running to suffer because I couldn’t keep up. I figured it was old age. I was enjoying my first full year of retirement when I woke up with a backache. After two months of tests, in July 2010, I was diagnosed with multiple myeloma, a treatable but not yet curable blood cancer in the plasma cells of the bone marrow.
Suzanne
In January 2021, I received my diagnosis after five months of multiple doctor visits, blood work, and biopsies. I had no common symptoms such as night sweats or fatigue, just a small lump behind my ear. It was removed, and the pathology came back as non-cancerous. About six or so weeks later, another lump showed up. I decided to switch doctors, and they also didn't feel it was cancer based on my chart. But after they removed it, the pathology shared a much different story.
Martin
In February of 2020, at 32 years old, Martin was diagnosed with acute lymphoblastic leukemia (ALL). Soon after being diagnosed, the COVID pandemic struck the world, and Martin was laid off from his job along with hundreds of others working for the major airline Avianca. With this, he lost his income and health insurance.
Micah
My wife was diagnosed with Pre-B-cell acute lymphoblastic leukemia (ALL) in June of 2018. For nine months I watched her battle her cancer and her treatments. I learned so much about what families with a cancer patient go through ― the uncertainty, the anxiety, and many protocols and precautions to keep your loved one safe. It was a very scary time for us, full of unknowns. But we lived each day at a time. The uncertainty brought us closer together and allowed us to live every moment with gratitude. My wife was in full remission before the end of the year, and we had so much to celebrate!
Carol
Meet carol. hodgkin survivor. indiana. Carol was diagnosed with Hodgkin lymphoma in 2010. After being a stay-at-home mom, she went back to school to get her teaching degree and found out she had a grapefruit size tumor in her chest when she was one week away from finishing her student teaching. She put off finding a teaching job for a year while going through six months of chemotherapy. She was able to work as a learning specialist while going through her treatments as she had a very supportive principal.
Dana
I was diagnosed with stage 4 non-Hodgkin lymphoma (NHL) in January 2018. I was lucky enough to get into City of Hope which is about 25 minutes from my house. I received all my treatment there. The first treatment was R-CHOP chemotherapy which required me to be in the hospital three to five days every three weeks for six months. I relapsed after six months and did an autologous bone marrow transplant in March of 2019. After about eight months, I relapsed again and prepared for an unrelated donor transplant.
Natalie
In December 1986, a week after my 15th birthday, I was diagnosed with acute undifferentiated leukemia (AUL) after having unclassifiable arthritis for two years. They now believe that I had pre-leukemic arthritis. So, when I was diagnosed, it was a blessing and a curse. It was a curse given how it turned my life upside down. I was now battling for my life and having to deal with the side effects of the treatment. It was a blessing because now I finally had a diagnosis, and there was a treatment that could be given to finally cure my condition.
Gena
I am 28 years old and a two-time cancer survivor. My life has come full circle many times, and I am here to share my story to inspire and help others to heal themselves.
My story begins when I was 3½ years old. I was diagnosed with acute lymphoblastic leukemia (ALL). At the time, I was treated at Schneider's Children's Hospital, now Cohen's Children's Medical Center. This was a long and tough battle with rounds of chemotherapy. I almost did not make it. Thank God I had the most loving support system which helped me get through the battle.
Valerie
I was a nurse prior to getting diagnosed with cancer. When I was working I wondered to myself, how are my patients so strong laying in that hospital bed? Little did I know I was going to be one. At age 24, back in 2013, I was diagnosed with acute lymphoblastic leukemia (ALL). Months before I just had a small lump on my neck and thought it would go away, but I decided to check out what was going on.
Thomas/TJ
This picture is of my brother and my son. Both fought valiantly from acute lymphoblastic leukemia (ALL) and Hodgkin's lymphoma respectively.
It started in 2009 when my son, Thomas came home from his freshman year in college. He was diagnosed with Hodgkin's lymphoma and was treated right away. He went through the regular protocol which lead to the next level and then trial drugs, radiation, and autonomous stem cell transplant.
Debra
In October 2011, while at work, I fell after attempting to sit on a chair, and I went to the emergency for x-rays. As soon as the technician began the process, he entered the room to ask if I had scoliosis. I replied, "no" and he proceeded with the exam.
Jean-Paul
This is the fourth anniversary of Jean-Paul being diagnosed with acute myeloid leukemia (AML). We had just gotten back from San Francisco, and Jean-Paul got scratched by Oskar. We thought we would go to the emergency room to get an antibiotic shot and maybe a tetanus shot and then go to dinner. Instead, we spoke to the doctor, and 1.5 hours later the doctor had already reached Jean-Paul’s oncologist (this is Jean-Paul’s second diagnosis of cancer, the first was testicular cancer in 2016). They set him up to start chemo the next day. We were shocked and did not believe it.
