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Manuel

Part 1: A Survivor’s Mission

Ten years ago, my life was forever changed by three words, “You have cancer.” Those words shocked my invincible-minded adolescence into reality. I was a 15-year-old sophomore in high school, and I was terrified beyond comprehension. I knew nothing about cancer, chemotherapy, or what was about to happen to me. All I knew was that my life was involuntarily put on hold as I engaged in war with an enemy I never saw coming. With my entire world turned upside down and displaced within the confines of DuPont Hospital, life seemed utterly hopeless.

Samuel

On June 21, 2019, my sweet, goofy, little boy, Samuel, turned 3 years old, and we had a big celebration. We threw Samuel a beautiful birthday party surrounded by family and friends at a local farm. The kids played, fed the farm animals, went on pony and tractor rides, and ate pizza and cake. It was a day Samuel still remembers and talks about. He has always been so bright, even as a baby, saying words like “tickle” at 10 months old.

Mike

My personal story with blood cancer started in 2020 but nobody really knew how long it was brewing. A day came when back spasms started raging and my Primary Care Physician (PCP) sent me to physical therapy (PT). It didn’t take more than 1 visit to PT to know that was a bust and finally my PCP sent me to the Hematologist. This is where my blood cancer story becomes reality, in no more than 5 minutes, the Hematologist sent me directly to the Huntsman Cancer Institute.   

Treatment

It's important that your doctor is experienced in treating patients with acute leukemia or has access to an acute lymphoblastic leukemia (ALL) specialist.

Doctors use several types of approaches and treatment combinations for ALL:

Disease Complications

Myeloma and treatment of myeloma can lead to mild to serious health complications and side effects. Some of these symptoms can be managed with ongoing supportive (palliative) care. Others may be medical emergencies requiring immediate attention. Always tell your healthcare team if you experience new or worsening symptoms. 

Pain related to myeloma or myeloma treatment can include 

Related Diseases

Myeloma shares some similar features and symptoms with other blood disorders, including:

Options for Egg Preservation

You may be able to take certain steps and precautions to preserve fertility before, during and after treatment. 

The Affordable Care Act (ACA)

The Affordable Care Act requires health insurance plans sold through www.healthcare.gov and its state-based marketplaces to comply with a number of requirements. Many of these – including the ones described below – are meant to ensure that patients have access to meaningful health insurance coverage. It’s important to be aware that some health plans, available today through non-governmental sites, may not include these patient protections.

Hudson

Hudson entered the world on March 31, 2017. This is the day my heart left my own chest and was beating outside of my body. My whole world was immediately consumed by this little, perfect bundle of cuteness. As far as cancer risk goes, he didn’t really have any. He had a healthy infancy and toddlerhood, barely needing a Band-Aid. This is the case for so many children. In November of 2018, Hudson became a big brother to Violet. I can remember being in the studio for Violet’s newborn photos when the photographer had Hudson lay beside Violet.

Diagnosis

While certain signs and symptoms may indicate that a person has MF, 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 the effectiveness of treatment.

Pain Treatment

Pain can be managed effectively in a number of ways, depending on the cause and type of your pain. Treatments may include:

Miriam

My name is Miriam Hernandez, and I have been a long-time volunteer with The Leukemia & Lymphoma Society (LLS). I first started volunteering in 2010 working with the LLS Greater Los Angeles Region and their Patient Services Team to help with outreach into the Latino community in Los Angeles. I worked on an education program about myths and misconceptions about blood cancers done in the form of a “bingo” style game.

Graft-Versus-Host Disease

Graft-versus-host disease (GVHD) is a potentially serious complication of allogeneic stem cell transplantation and reduced-intensity allogeneic stem cell transplantation. In this treatment, a patient’s own damaged or diseased blood-forming stem cells are destroyed. Then they are replaced with healthy stem cells from a donor.

Supportive Care and Disease Complications

Supportive (palliative) care for myeloma helps manage the complications of the disease and the adverse side effects of the drugs used for treatment, including: 

Insurance Coverage

Health insurance helps pay for costly medical treatment and can protect you and your family from financial hardship. Some people have private health insurance coverage either through an employer (often called a group plan) or through an individual policy they've purchased. Even if you have coverage, however, certain treatments and charges may not be covered or paid in full. And there's the potentially overwhelming task of filing or appealing health insurance claims, especially when you're undergoing cancer treatment.

Donna

The year 2021 was quite a year for us. It was the year of cancer. No one ever really prepares themselves for the diagnosis of cancer, and when you're told you have it, the emotional roller coaster you are about to embark on cannot ever be fully described in words. The fear, the exhaustion, the financial burden, the feeling of helplessness you experience is completely terrifying. In the year 2021, we started the fight of all fights, the fight to save my husband's life. This is our story of cancer. Our story of love, life, hope, and healing.

Peter

My story starts a year and a half before diagnosis when a serious body surfing accident led to blood tests showing significantly low red and platelet counts. My primary care physician (PCP) retested several times in a short period, and when the counts came back closer to normal, she chose to stop her inquiry without scheduling further tests or redoing the same test, say, six months later to see if the lower values were actually correct. There was no discussion of what it would have meant if the lower counts were, in fact, an accurate representation of my blood health.

Diagnosis

An accurate diagnosis is one of the most important aspects of a person’s medical care. Obtaining a precise diagnosis will help the doctor to:

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

The results of blood tests that accompany periodic medical examinations may indicate the need for further evaluation for myeloma. These include an elevated protein level, anemia and abnormalities in kidney function or calcium levels.

Blood Transfusion

Blood transfusion using cells donated by healthy volunteers can help replace red cells, platelets and other blood components. Some people with leukemia, lymphoma, myeloma and other blood diseases or disorders such as hereditary anemias and aplastic anemia need periodic blood transfusions for several reasons:

Cancer-Related Fatigue

Fatigue is very common in patients with blood cancers. Cancer-related fatigue (CRF) is characterized by excessive and persistent exhaustion that interferes with daily activity. CRF often begins before cancer is diagnosed, worsens during the course of treatment and may persist for months—even years—after treatment ends. 

Dental and Oral Complications

Side effects of cancer treatment may cause a variety of problems affecting the mouth, teeth and jaw, and they impact your quality of life. The side effects you experience will depend on the type and duration of the treatment you receive. There are things you can do to decrease the risk of dental and oral problems.

A thorough oral evaluation by a dental professional is recommended prior to treatment. During and after treatment, work closely with your entire healthcare team to manage any oral complications. Proper dental hygiene on an ongoing basis is essential.

Sexual Health and Intimacy

These webpages cover a range of sensitive topics related to intercourse, sexual health, intimacy and cancer. Although not always discussed, sexual health and intimacy are an important part of your wellbeing, even after a cancer diagnosis. Please note: If you have experienced any type of sexual trauma, we recommend that you seek support and help from a trusted healthcare professional before reading further.

Tim

It was December 2006. I was 28 years old, and I discovered some purple bruises on my leg. I had never seen anything like these on my body before, so I went to my primary care physician. He took some bloodwork, then called me to say I needed to go to the hospital at once. My parents’ friend drove me and my parents to the hospital, and I ended up staying at the hospital for four days.

Big Climb

No matter where you live, no matter what your connection to cancer may be, you can step up to take cancer down by being a part of The Leukemia & Lymphoma Society’s Big Climb.

Take on a new challenge, by climbing to the top of iconic buildings, all while raising critical funds towards The Leukemia & Lymphoma Society’s mission to cure leukemia, lymphoma, Hodgkin's disease, and myeloma, and improve the quality of life of patients and their families.

Dax

“I just wanted to let you guys know that I’m so supportive of everybody who likes my stuff even though not a lot of people like my stuff – like I’m not huge or anything – I’m pretty small. I just want to show you guys support, and even though I know most of it is just my friends, people I know, who I’ve met, that really helps when you see appreciation for things that you do.”