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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.
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:
Graysen
Graysen was born in March 2017. She was born the day before my birthday and we often say that she was the greatest birthday present ever. She was such an easy-going baby - happy, curious, and sweet with a magnetic personality. She was seemingly healthy, happy and 21 months old when we shockingly learned she had leukemia in November 2018. It was a diagnosis we never saw coming and one we were forced to simultaneously digest, navigate and hit head on.
Lori
Lori’s journey to becoming a Leukemia & Lymphoma Society (LLS) volunteer began back in 2002 through her own experience with being diagnosed with Myelofibrosis. Lori had just embarked on a new job as a real estate agent to a new home builder when she began to feel extremely tired and have pain in her hands. She chalked up her sickness to a case of the flu; however, after deciding to go to her doctor, he recommended some blood work which came back showing high white counts. Her doctor referred her to an Oncologist who did a bone marrow biopsy. The results showed she had Myelofibrosis.
Krista
Prior to my diagnosis, I was a much-loved daughter to my parents, a dedicated dog mama to my Golden Retriever, a loyal friend, and an enthusiastic high school history teacher. After my diagnosis and seven-year battle with refractory Hodgkin lymphoma (HL), I was still all of those things and somehow so much more.
Isabelle
I was diagnosed with acute lymphoblastic leukemia (ALL) on December 4, 2003, at the age of five. As a young child, I was very energetic and loved to do anything outdoors and active, and I especially loved a good competition with my older brother Harrison. My parents began noticing that something was off when I started complaining about not being able to walk up the big hills in San Francisco where we lived. This was very uncharacteristic of me as I loved to race my brother to the top.
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.
Julie
March 22, 2020- 7 years since acute myeloid leukemia (AML) diagnosis, CURED!!! I am so blessed to be alive to celebrate my 7th year since diagnosis of AML! Who celebrates being diagnosed with AML or any cancer for that matter? But let’s be honest, in the cancer lottery, AML, is not one of the preferred. At least if you cling to cancer stats which is something I highly discourage. The first problem with AML stats specifically-the mean DX age of 68ish.
Savanna
My name is Savanna, I’m 24 years old, and I am a two-time Hodgkin lymphoma (HL) survivor! I was diagnosed in 2017 when I was 18 during my freshman year of college. I had been severely sick for a year and a half with symptoms ranging from nausea, vomiting, unexplained weight loss, lack of appetite to a distended abdomen, debilitating migraines, swollen lymph nodes all over my body, extreme fatigue, and drenching night sweats. I had test after test done, saw doctor after doctor, and after months of being my own advocate, I had finally received a diagnosis.
Aila
Aila was diagnosed with acute myeloid leukemia (AML) on October 5, 2023. She was nearly 16 months old and was just getting used to being a walking toddler and enjoying the exploration of her world. Aila had been feeling sick for a few weeks before she was diagnosed. She had fevers, irritability, fatigue, sleeping long hours, and a decreased appetite. In the last several days before she was diagnosed, she started getting unexplained bruising and petechiae (broken blood vessels) all over her body.
Myeloma Overview
Myeloma Link Connecting African American Communities to Information, Expert Care, and SupportAs black Americans are at twice the risk for myeloma as whites, The Leukemia & Lymphoma Society has created Myeloma Link to increase access to education and treatment for myeloma in African American communities.
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.
Induction therapy, given before the transplant, has several goals:
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:
Chemotherapy
Chemotherapy is the main treatment for ALL. The phases of treatment include the following:
Induction TherapyThe first phase of chemotherapy is called “induction therapy.” Induction therapy
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.
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.
Watch and Wait
Watch and wait involves closely monitoring a patient's condition without giving any treatment until symptoms appear or change. Some people can manage their blood cancer — depending on the disease — with their doctors for years using a watch-and-wait approach. It is usually recommended for patients in early stages of indolent (slow-growing) or chronic forms of blood cancers.
Your doctor can monitor your condition for disease progression with regular physical exams and lab tests. You won't take any drugs or undergo any forms of treatment during this period.
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.
DatingDating 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.
Nora
Nora was diagnosed with acute lymphoblastic leukemia (ALL) on August 20, 2018. This is the day our lives were turned upside down and forever changed. Nora was about three weeks away from her second birthday, and we were in utter shock that she would now be fighting an unfathomable battle. After all, this was Nora, our go-hard, go-fast, ray of sunshine. Never did we imagine anything could get her down. But yet, here we were.
Cassie
In April 2023, I started to notice that I was having trouble breathing. I was a perfectly healthy 34-year-old woman who did kickboxing three times a week and was very physically active. I ended up going to a doctor who, for three months, misdiagnosed me with asthma and acid reflux. After about three visits to his office, I was crying to him, begging to be referred to a specialist. I really felt that there was something wrong with me that wasn't asthma.