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Resources for Survivors
Survivorship WorkbookUse this Survivorship Workbook to collect all the important information you need throughout diagnosis, treatment, follow-up care and long-term management of a blood cancer.
Dental Health
Dental care is an important part of overall cancer care. Good nutrition also plays a big role in dental health. Problems with the teeth, gums or mouth can interfere with eating well. Poor nutrition can lead to dental problems.
Visit the dentist at least four weeks before treatment begins if possible, and
Chemotherapy
ChemotherapyChemotherapy is the use of potent drugs or chemicals, often in combinations or intervals, to kill or damage cancer cells in the body. Chemotherapy drugs are often called anticancer agents. The drugs must be toxic enough to kill leukemic cells, which is why chemotherapy can be hard on your body; the drugs' toxicity can harm your healthy cells as well. However, successful chemotherapy depends on the fact that cancerous cells are more sensitive to the chemicals in the drug than normal cells are.
Mental Health
The term “mental health” includes your emotional and psychological well-being. Your mental health guides how you handle stress, manage relationships and make decisions. Mental health, like physical health, is important to your overall well-being.
Emotions like sadness, anger or stress are normal and healthy responses to difficult life events, such as a cancer diagnosis. However, sometimes persistent feelings of sadness, stress or anxiety can be caused by a mental health disorder. Don't ignore any of these feelings. Talk to your healthcare team about how you are feeling.
Dellyanett
I was healed from cancer in 90 days! God's glory was displayed in my life in such a major way! I knew I was coming into this with VICTORY and coming out of it in VICTORY! My faith was elevated to another level. It was only a season of my life that came and went, TO GOD BE THE GLORY! This happened at a time when I was going to move to Atlanta Georgia to pursue what God has called me to do. One of those things was Acting. It seemed that at that time everything was working in my favor.
Nausea and Vomiting
Many cancer treatments can cause nausea and vomiting. Nausea, also called feeling “queasy” or “sick to your stomach,” is that unpleasant feeling you have when you are going to throw up. Vomiting is throwing up what is inside your stomach through the mouth. Nausea and vomiting can happen together, or one can occur without the other. The severity of nausea and vomiting varies among patients. Sometimes these side effects improve as you adjust to treatment, and most side effects go away after treatment ends.
Stem Cell Transplantation
The goal of stem cell transplantation is to cure the patient’s cancer by destroying the cancer cells in the bone marrow with high doses of chemotherapy and then replacing them with new, healthy blood-forming stem cells. The healthy blood stem cells will grow and multiply forming new bone marrow and blood cells. There are two main types of stem cell transplantation. They are
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:
Diagnosis
Diagnosing juvenile myelomonocytic leukemia (JMML) usually involves ruling out other similar diseases such as chronic myelomonocytic leukemia and chronic myeloid leukemia, especially if your child is older than 6 years. Doctors commonly use blood tests and bone marrow tests to diagnose JMML.
The tests used to diagnose JMML include:
Side Effects
Cancer therapy for hairy cell leukemia can sometimes produce side effects. 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.
Before you undergo treatment, talk with your doctor about potential side effects. Drugs and other therapies can prevent or manage many side effects.
Signs and Symptoms
In the early stages of myeloma, some patients have no signs or symptoms of the disease. It is sometimes detected before symptoms appear, when results of laboratory tests done as part of a routine medical examination show abnormalities in the blood and/or urine. When symptoms are present, the most common ones are bone pain and fatigue.
Signs of MyelomaDoctors sometimes refer to the acronym, CRAB, to describe signs of myeloma. The letters stand for
Legal and Financial
Advance DirectivesAdvance directives are a patient's instructions about future medical care in case he or she can no longer speak for himself or herself. Ideally, an advance directive should be in place before a person becomes ill or before a crisis.
Madeline
Being in a very close-knit family, we were devastated upon learning of our sister Madeline’s diagnosis of AML. There were 4 of us girls and all 3 of us wanted to do anything to help our sister survive. Our biggest challenge was staying positive and offering her and her family support. The 3 of us were tested and I was her perfect match. I was overjoyed to be able to do this for her. Although my other sisters felt let down that they weren’t, we were all constant support through her journey.
Jennifer
Jennifer of Hayward, CA, was diagnosed with myeloma (MM) in 2008. During this process, she endured a year of intense chemotherapy, followed by an autologous stem cell transplant where her own stem cells were harvested and reintroduced into her body on January 8, 2010. This resulted in an extended hospital stay followed by radiation treatments. She is currently in remission and remains under doctor’s care. After her diagnosis and treatments, she wanted to give back to others living with the disease.
Grace
I’m 15 years old, and I’m a ballerina, Junior Zoo Keeper at Cheyenne Mountain Zoo, actress, singer, and I am a childhood leukemia survivor.
When I was five years old, my parents noticed that I was getting a lot more bruises and nose bleeds than usual (even living in New Mexico at the time). My abdomen was really swollen and I was taking frequent naps, which was also alarming to my parents. They took me to an urgent care location near my house where the doctors said that I was fine.
Louise
During the last week of July 2019, Louise, then-two-and-a-half-year-old, developed unusual red dots on her chest and some gnarly, yet explainable, bruises all over her body. We chalked the rash up to wearing an unwashed shirt and the bruises to being an extremely active two-year-old. Then, after her gums bled one afternoon, we hopped on Google and became increasingly concerned with the search results. However, Louise wasn’t acting “sick,” so her parents ignored Dr. Google’s diagnosis.
Jaleah
In April 2018, our lives were forever changed when we found out that our sweet Jaleah, full of life and personality, had cancer. Sometimes life is unfair — to sit there helpless and scared and then hear the doctor say, “Your child has cancer,” was pure devastation and the worst day of our lives! These words should never be heard by any parents.
We got transferred the next day to Duke Children’s Hospital, and I was still in disbelief. How could my sweet snuggly baby, who has a history of good health, loves to eat, and bury her head into my shoulder, have cancer?
Barbara
At age 60, I stopped working as a full-time physical therapist and started working PRN at two different facilities. My reasoning was I could help my elderly but healthy parents when needed and help out with my grandkids. Everything was going great until the COVID-19 pandemic hit. I was laid off from both jobs. My father was very afraid of COVID-19 and wouldn’t let my mom leave the house, so I started doing all of their shopping. I had been fatigued for months but attributed this to work or being out of shape.
Allison
My story is not all that different from many others. It began with two-year-old me not feeling well and my mom taking me to the pediatrician on a Monday. They diagnosed me with an ear infection and gave me antibiotics. On Friday, still not better, my mom asked my dad if they should let the doctor take another look at me. In my mom’s words, “Something’s not right with my little girl.” Fortunately, the doctor ran a platelet test. My results were so off the charts that she also ran the test on herself to make sure the machine was not broken.
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).
Timothy
I am an awardee of The Leukemia & Lymphoma Society’s (LLS) Scholarship for Blood Cancer Survivors. I currently hold an associate’s degree in science and am pursuing my bachelor's degree in biology at California State University, San Bernardino, (CSUSB). I am very grateful to be granted this scholarship to help pay for my tuition. In fact, this is the first scholarship I have ever been awarded during my education. These funds are a big stress reliever as it has provided me with the ability to avoid taking out a loan for school and given me peace of mind.
Megan
Megan is my daughter. She was diagnosed in April 2020 with stage 2 Hodgkin lymphoma (HL) at the age of 16. At the time, Megan was finishing up her sophomore year of high school. Due to the pandemic, school was virtual, and even though she had a month and a half to go, she finished with straight A’s while receiving chemo. She would go on to have four cycles that included 16 rounds of chemo. Her cancer was still not completely gone, so a 21-day regimen of radiation was administered.
Landon
My cancer journey began on June 24, 2018. A month before that day, I'd experienced chest pains, night sweats, and shortness of breath. After scheduling a doctor's appointment, my primary physician determined that it was merely an upper respiratory infection. For a week, I took the medicine prescribed by my doctor, hoping that I would soon feel well again. With little to no signs of improvement, I scheduled another appointment for Monday, June 25th. We didn't make it to that appointment, because on June 24th, I lost oxygen and passed out.