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Treatment
On average, individuals with essential thrombocythemia (ET) have a normal life expectancy if they are properly monitored and treated. It's important that your doctor is experienced in treating myeloproliferative neoplasms (MPNs) or works in consultation with a hematologist oncologist who has experience treating MPN patients.
Choosing a Blood Cancer Specialist
Hematologists specialize in internal medicine with a subspecialty in hematology, the study of diseases of the blood. A “hematologist-oncologist” is a doctor who specializes in treating people with blood cancers. Pediatric hematologist-oncologists treat infants, children, and adolescents with blood cancers. Blood cancers are uncommon diseases, so it can be to your advantage to be treated by a doctor specially trained to focus on treating patients with blood cancers.
Children and End of Life
Children facing end-of-life have specific needs and concerns to consider. It's important to approach them in a spirit of honesty. However, honesty doesn't mean overwhelming them with information and details that can be frightening. Honesty means honesty of feeling. Information needs to be screened and made appropriate for their needs.
Israel
I am 39 years old, a father of two boys and one girl ― Abdias, 12 years old; Ester, 10 years old; and Ben, 9 years old ― and a husband to my wife Erin for almost 14 years.
On August 14, 2021, I suffered a serious knee injury playing basketball which inadvertently led to revealing I had a blood cancer called chronic myeloid leukemia (CML). Suddenly, instead of prepping for knee surgery, I was sent to the hospital and received an official diagnosis on September 9 after a bone marrow biopsy and what felt like a million tests.
Crystal
My story starts in early December 2024. I had been getting sick a lot that year, and it finally struck me as odd when it just wouldn’t go away. I had this intense pressure in my chest as if something was sitting on top of it. Something felt wrong. I finally realized I had to go in and get checked out; I could no longer ignore my body. Early one morning, I went to urgent care, figuring I might have pneumonia or a chest infection and that I’d be sent home with some medication.
Teresa
It took two months for the doctors to take my illness seriously. I was suffering from hip and leg pain, but the doctors thought it was caused by the sports I was playing in high school. They would send me home with pain medication.
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.
Be Your Child’s Advocate
Parents may need to educate other family members, friends, school personnel and healthcare providers about long-term and late effects. Here are some steps parents can take:
Chemotherapy and Drug Therapy
The main treatment for active myeloma is systemic drug therapy (meaning the drugs travel through the bloodstream to kill malignant cells). The initial therapy, or “induction therapy,” for myeloma usually includes a combination of targeted agents and/or standard chemotherapy. This therapy is often followed by stem cell transplantation in eligible patients.
Common drugs combinations for people with newly diagnosed myeloma include:
Treatment Outcomes
With the current advances in treatment and supportive care, survival rates for myeloma patients have improved significantly in the last decades. It is not unusual for myeloma patients to live for 10 years or longer after diagnosis. Outcomes are influenced by a series of patient-specific factors, including disease stage, chromosome abnormalities, age and presence of other medical problems. Patients should discuss their own potential outcomes with their doctors.
Click here to access myeloma survival statistics.
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:
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
Chronic myeloid leukemia (CML)- 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.