Tag Archive for: Acute Myeloid Leukemia

Confused About AML Genetic Testing and Treatment? What You Need to Know

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Confused About AML Genetic Testing and Treatment? What You Need to Know. from Patient Empowerment Network on Vimeo.

What is AML genetic testing? Dr. Alice Mims explains genetic testing in AML, including the necessity of testing, the effect on treatment decisions, and why patients should be retested over the course of their disease.
 
Dr. Alice Mims is a hematologist specializing in acute and chronic myeloid conditions. She serves as the Acute Leukemia Clinical Research Director at The Ohio State University Comprehensive Cancer Center – James.

See More From INSIST! AML

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How is Acute Myeloid Leukemia (AML) Treated?

  

Effective AML Combination Treatment: Pairing Old and New Therapies

  

AML Genetic Testing Explained

Transcript:

Dr. Mims:

So, in regards to older treatments and being effective, seven plus three, which is an intensive chemotherapy, is still the standard of care treatment for patients with favorable risk AML, if they’re candidates for intensive treatments because it is potentially curative. And 7 + 3 is also the backbone for newly diagnosis for patients with FLT3 mutations, we add a FLT3 inhibitor called Midostaurin onto that, as it’s shows to improve overall survival with the addition of that compared to just the chemotherapy alone.  

And also, hypomethylating agents, which are a less intensive treatment, were the standard of care for patients who couldn’t tolerate intensive chemotherapy.  

And now we’re seeing the addition of other agents being added to this, like the BCL2 inhibitor of Venetoclax.  

And recent data in phase 3 trial comparing the hypomethylating agent alone versus adding that agent did show an overall survival advantage. And so, these are definitely evolving, and I think as we are learning more about targeted therapies and how they can best be used in combination with chemotherapy other than single. Agent. But you give two targeted therapies together and having even better outcomes. We hope we continue to make improvements from where we were even just five years ago and do a better job for. 

How is Acute Myeloid Leukemia (AML) Treated?

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How is Acute Myeloid Leukemia (AML) Treated? from Patient Empowerment Network on Vimeo.

 When diagnosed with Acute Myeloid Leukemia (AML), understanding available treatment options can be overwhelming. Dr. Alice Mims, an AML specialist, provides an overview of AML therapies and discusses factors to consider when deciding on an appropriate therapy with your healthcare team.

Dr. Alice Mims is a hematologist specializing in acute and chronic myeloid conditions. She serves as the Acute Leukemia Clinical Research Director at The Ohio State University Comprehensive Cancer Center – James.

See More From The Pro-Active AML Patient Toolkit

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Facing a Cancer Diagnosis: Advice From An Expert

  

Effective AML Combination Treatment: Pairing Old and New Therapies

  

AML Treatment Options: What’s Available?

Transcript:

For the past 30 years, we’ve had the same treatment options, which have been standard intensive induction chemotherapy that weren’t really tailored to individual patients and had significant toxicity. And not necessarily effective for all AML genomic subtypes.

Now we have quite a bit added to the treatment arsenal for AML, including continuing intensive induction chemotherapy for patients who are appropriate. There’s also been the addition for newly diagnosed patients for hypomethylating agents and a new BCL-2 inhibitor called Venetoclax. IDH inhibitors for patients with IDH1 and IDH2 mutations. The addition of FLT3 inhibitors for patients either newly diagnosed or with relapse or refractory disease.

And liposomal daunorubicin and cytarabine in for patients with AML with MDS related changes or therapy related AML that are newly diagnosed. Lastly, there’s also a hedgehog inhibitor, glasdegib, that’s been approved for newly diagnosed AML patients in combination with low dose cytarabine.  

So, when working with patients, there are multiple factors that we take into consideration when coming up with a treatment decision together and it really should be a team approach. But one of the most important things is trying to understand the patient’s goals of care.

Because different treatments have different expectations, side effects, toxicities that we want to be sure we’re all aligned when we’re making a treatment decision together. Also, other features that we take into account can be age. Other comorbidities, including other diagnosis such as cardiovascular disease, diabetes and other medical issues patients may have.

So, for roles that patients have in making these decisions, they should know that they’re their own best advocate. And so, as you’re getting to learn your oncologist who’s helping you make these treatment decisions, it’s very important that you talk about things that are important to you in regards to quality of life, overall goals for your life. Ask questions in regard to side effects and expectations for outcomes for potential treatment. Whether they’re curative or more palliative, which can extend life. And for quality of life, it may not be curative for AML.  

So, AML really was considered a single disease 30, 20 years ago. Now we really know it’s likely dozens of diseases based off of looking at molecular features of an individual patient’s AML. So, it’s very important to try to understand what genomic features your AML may have, meaning DNA mutations that are just present in the leukemia cells. Chromosomal changes as well. And then understanding if, based off that information, that that may afford you additional treatment options other than the current standards of care.  

Effective AML Combination Treatment

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Pairing Old and New Therapies

Effective AML Combination Treatment: Pairing Old and New Therapies from Patient Empowerment Network on Vimeo.

With advances in AML research and a number of new treatments, can older therapy types still play a role in care? Dr. Alice Mims discusses pairing early AML treatments with new agents to boost their effectiveness.

Dr. Alice Mims is a hematologist specializing in acute and chronic myeloid conditions. She serves as the Acute Leukemia Clinical Research Director at The Ohio State University Comprehensive Cancer Center – James.

See More From The Pro-Active AML Patient Toolkit

Related Resources

 

Key Genetic Testing After an AML Diagnosis

  

How is Acute Myeloid Leukemia (AML) Treated?

  

AML Treatment Advances: What’s  New for YOU?

Transcript:

So, in regards to older treatments and being effective, seven plus three, which is an intensive chemotherapy, is still the standard of care treatment for patients with favorable risk AML, if they’re candidates for intensive treatments because it is potentially curative. And 7 + 3 is also the backbone for newly diagnosis for patients with FLT3 mutations, we add a FLT3 inhibitor called Midostaurin onto that, as it’s shows to improve overall survival with the addition of that compared to just the chemotherapy alone.

And also, hypomethylating agents, which are a less intensive treatment, were the standard of care for patients who couldn’t tolerate intensive chemotherapy.

And now we’re seeing the addition of other agents being added to this, like the BCL2 inhibitor of Venetoclax.

And recent data in phase 3 trial comparing the hypomethylating agent alone versus adding that agent did show an overall survival advantage. And so, these are definitely evolving, and I think as we are learning more about targeted therapies and how they can best be used in combination with chemotherapy other than single. Agent. But you give two targeted therapies together and having even better outcomes. We hope we continue to make improvements from where we were even just five years ago and do a better job for.

Acute Myeloid Leukemia

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What is Leukemia?

Leukemias are cancers that start in cells that would normally develop into different types of blood cells. It is a cancer of the body’s blood-forming tissues, including the bone marrow and the lymphatic system. Most often, leukemia starts in early forms of white blood cells, but some leukemias start in other blood cell types.

There are several types of leukemia, which are divided based mainly on whether the leukemia is acute (fast growing) or chronic (slower growing), and whether it starts in myeloid cells or lymphoid cells. The main types of leukemia include:

  • Acute Lymphocytic Leukemia (ALL)
  • Acute Myeloid Leukemia (AML)
  • Chronic Lymphocytic Leukemia (CLL)
  • Chronic Myelogenous Leukemia (CML)
  • Other – Other, rarer types of leukemia exist, including hairy cell leukemia, myelodysplastic syndromes and myeloproliferative disorders

In this article we will be focusing on Acute Myeloid Leukemia (AML) since it is the most frequent acute leukemia in adulthood.

What is Acute Myeloid Leukemia?

Acute myeloid leukemia (AML) is a cancer of the blood in which the bone marrow makes abnormal cells. The “acute” in Acute Myeloid Leukemia denotes the disease’s rapid progression In AML, myeloid stem cells usually mature into abnormal myeloblasts, or white blood cells. But, they sometimes become abnormal red blood cells or platelets. As they multiply, they overwhelm the normal cells in the bone marrow and blood. The cancer cells can also spread to other parts of the body.

This type of cancer usually gets worse quickly if it is not treated. It is the most common type of acute leukemia in adults. AML can also be referred to as:

  • Acute myelogenous leukemia
  • Acute myeloblastic leukemia
  • Acute granulocytic leukemia
  • Acute nonlymphocytic leukemia

Types of Acute Myeloid Leukemia

Knowing the subtype of AML can be very important, as it sometimes affects both a patient’s outlook and the best treatment. Most types of AML are based on how mature (developed) the cancer cells are at the time of diagnosis and how different they are from normal cells. The different types of AML include:

The French-American-British (FAB) Classification

  • M0 – Undifferentiated acute myeloblastic leukemia
  • M1 – Acute myeloblastic leukemia with minimal maturation
  • M2 – Acute myeloblastic leukemia with maturation
  • M3 – Acute promyelocytic leukemia (APL)
  • M4 – Acute myelomonocytic leukemia
  • M4 eos – Acute myelomonocytic leukemia with eosinophilia
  • M5 – Acute monocytic leukemia
  • M6 – Acute erythroid leukemia
  • M7 – Acute megakaryoblastic leukemia

World Health Organization (WHO) Classification

  • AML with recurrent genetic abnormalities, meaning with specific chromosomal changes
  • AML with multilineage dysplasia, or abnormalities in how the blood cells look
  • AML, related to therapy that is damaging to cells, also called therapy-related myeloid neoplasm
  • AML that is not otherwise categorized
  • Myeloid sarcoma
  • Myeloid proliferations related to Down Syndrome
  • Undifferentiated or biphenotypic acute leukemias

Cytogenetics

AML can also be classified by the cytogenetic, or chromosome, changes found in the leukemia cells. Changes in certain chromosomes help diagnose cancer, plan treatment, or find out how well treatment is working. Chromosomal changes are commonly grouped according to the likelihood that treatment will work against the subtype of AML.

All chromosomes are numbered from 1 to 22. And, sex chromosomes are called “X” or “Y.” The letters “p” and “q” refer to the “arms” or specific areas of the chromosome. Some of the types of genetic changes found in AML include:

  • A translocation, which means that a chromosome breaks off and reattaches to another chromosome
  • Extra copies of a chromosome
  • A deletion of a chromosome

Some of the most common chromosomal changes are grouped as follows:

  • Favorable. Chromosomal changes associated with more successful treatment include abnormalities of chromosome 16 at bands p13 and q22 [t(16;16)(p13;q22), inv(16)(p13q22)] and a translocation between chromosomes 8 and 21 [t(8;21)].
  • Intermediate. Changes associated with a less favorable prognosis include normal chromosomes, where no changes are found and a translocation between chromosomes 9 and 11 [t(9;11)]. Many other subtypes are considered part of this group, particularly those with 1 or more specific molecular changes. Sometimes, extra copies of chromosome 8 or trisomy 8 may be classified as intermediate risk over unfavorable (see below).
  • Unfavorable. Examples of chromosomal changes that are associated with less successful treatment or with a low chance of curing the AML include extra copies of chromosomes 8 or 13 [for example, trisomy 8 (+8)], deletion of all or part of chromosomes 5 or 7, complex changes on many chromosomes, and changes to chromosome 3 at band q26.

Symptoms of AML

The signs and symptoms of AML vary based on the type of blood cell affected. They are generally nonspecific and warrant investigations for proper diagnosis. The signs and symptoms of AML are:

  • Fever
  • Pain in bones and joints
  • Pale skin
  • Easy bruising and contusions
  • Recurrent infections
  • Unusual bleeding, epistaxis, bleeding gums

Causes and Risk Factors for AML

Although the cause of AML is not known, several factors are associated with an increased risk of the disease. The following factors may raise a person’s risk of developing AML:

  • Age – AML is becomes more common as people get older
  • Being Male – AML is more common in males than in females
  • Smoking – Cancer-causing substances in tobacco smoke are absorbed by the lungs and spread through the bloodstream to many parts of the body
  • Genetics – Researchers are finding that leukemia may run in a family due to inherited gene mutation
  • Chemicals – Long-term exposure to chemicals like benzene, found in petroleum, cigarette smoke, and industrial workplaces, raises the risk of AML
  • Previous Cancer Treatment – People who have received chemotherapy and/or radiation therapy for other types of cancer, such as breast cancer, ovarian cancer, and lymphoma, have a higher risk of developing AML in the years following treatment.
  • Other Bone Marrow Disorders – People who have other bone marrow diseases can develop AML over time

How is Acute Myeloid Leukemia Diagnosed?

No screening exams exist for leukemia.

Doctors often discover that a person has chronic leukemia through routine blood testing. They may also rely on their experience and current knowledge of the disease.

If your doctor suspects you may have leukemia, he or she will order specific diagnostic tests such as a:

  • Blood test
  • Bone marrow biopsy
  • Spinal tap
  • Genomic testing

Is Acute Myeloid Leukemia Hereditary?

Leukemia does not usually run in families, so in most cases, it is not hereditary. However, people can inherit genetic abnormalities that increase their risk of developing this form of cancer.

For example having a family history of other blood disorders increases your risk of getting AML. These disorders include:

  • Polycythemia Vera
  • Essential Thrombocythemia
  • Idiopathic myelofibrosis.

Some syndromes that are caused by genetic mutations (abnormal changes) present at birth seem to raise the risk of AML. These include:

  • Down syndrome
  • Ataxia telangiectasia
  • Li-Fraumeni syndrome
  • Klinefelter syndrome
  • Fanconi anemia
  • Wiskott-Aldrich syndrome
  • Bloom syndrome
  • Familial Platelet Disorder syndrome

Newly Diagnosed AML Advice from an Expert

Dr. Elizabeth Bowhay-Carnes of UT Health San Antonio MD Anderson Cancer Center provides advice for patients facing an AML diagnosis, including:

  • Understand who your care team is including the main attending physician and the main nursing contact/support person would be
  • Designate a family member or friend to play the main supportive role

Preparing for Your AML Appointment

Your first appointment can be overwhelming and can be hard to grasp the realistic expectations of life during the AML treatment phase. Here are some tips and tricks to prepare you for your first appointment:

  • Write down any and all questions you have before coming to the doctor’s office
  • Bring a notepad to the appointment to jot down notes about what is said during the appointment or ask if you can record your visit
  • Consider your values and expectations of your quality of life
  • Keep copies of your medical records
  • Bring a friend or a family member to your appointments to help you retain all the information discusses
  • Consider all your treatment options, including any clinical trials available to you

Treating Acute Myeloid Leukemia

Treatment of AML depends on several factors, including the subtype of the disease, your age, your overall health and your preferences. The types of treatment include:

  • Chemotherapy – the primary treatment options that uses chemicals to kill cancer cells
  • Targeted therapy – medications that target cancer cells, but don’t affect healthy cells. This type of treatment usually has less side effects
  • Other drug therapy
  • Stem Cell transplant – also called a bone marrow transplant, helps re-establish health stem cells by replacing unhealthy bone marrow with leukemia-free stem cells that will regenerate health bone marrow
  • Clinical trials – can involve therapy with new drugs and new drug combinations or new approaches to stem cell transplantation

it is often a good idea to seek a second opinion. A second opinion can give you more information and help you feel more confident about the treatment plan you choose.

What You Can Expect From AML Treatment

Based on your treatment options that you have discussed with your care team, it Is important you understand how treatment may affect you. Some things you should discuss with your care team and loved ones include:

  • Your personal goals and values
  • Results you can expect
  • Potential side effects
  • Palliative care
  • How treatment may affect your life
  • The financial costs of treatment

Recovery and Survival

Leukemia represents 3.5 percent of all new cancer cases in the United States, and it is the seventh leading cause of cancer death. The outlook for leukemia patients depends on which type of leukemia they have, their overall health, and their age.

In the case of AML, it makes up 32% of all adult leukemia cases and there will be about 19,940 new cases of AML in the United States this year. Remission in AML is usually defined when the bone marrow contains fewer than 5% blast cells. For most types of AML, about 2 out of 3 people with AML who get standard treatment go into remission. The 5-year survival rate for people 20 and older with AML is about 25%. For people younger than 20, the survival rate is 67%.

Sources:

“Treatment.” Acute Myeloid Leukemia Treatment | Leukemia and Lymphoma Society, 26 Feb. 2015, www.lls.org/leukemia/acute-myeloid-leukemia/treatment.

“Adult Acute Myeloid Leukemia Treatment (PDQ®)–Patient Version.” National Cancer Institute, www.cancer.gov/types/leukemia/patient/adult-aml-treatment-pdq.

“Acute Myeloid Leukemia (AML) Subtypes and Prognostic Factors.” American Cancer Society, www.cancer.org/cancer/acute-myeloid-leukemia/detection-diagnosis-staging/how-classified.html.

“Leukemia – Acute Myeloid – AML – Subtypes.” Cancer.Net, 18 Aug. 2017, www.cancer.net/cancer-types/leukemia-acute-myeloid-aml/subtypes.

“Leukemia Types, Symptoms, and Treatments.” UPMC HIllman Cancer Center, hillman.upmc.com/cancer-care/blood/types/leukemia.

“Treating Acute Myeloid Leukemia (AML).” American Cancer Society, www.cancer.org/cancer/acute-myeloid-leukemia/treating.html.

“Acute Myelogenous Leukemia.” Mayo Clinic, Mayo Foundation for Medical Education and Research, 27 Dec. 2017, www.mayoclinic.org/diseases-conditions/acute-myelogenous-leukemia/diagnosis-treatment/drc-20369115.

“Treatment Response Rates for Acute Myeloid Leukemia (AML).” American Cancer Society, www.cancer.org/cancer/acute-myeloid-leukemia/treating/response-rates.html.

“Leukemia – Acute Myeloid – AML – Statistics.” Cancer.Net, 19 Feb. 2020, www.cancer.net/cancer-types/leukemia-acute-myeloid-aml/statistics.

A Look at Leukemia

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What is Leukemia?

As with many other cancers, leukemia is not a singular disease. There are many types of leukemia, and while it is a common childhood cancer, leukemia actually occurs more often in older adults. Leukemia is the most common cancer in people under the age of 15, but it is most likely to affect people who are 55 or older. There are more than 60,000 cases of adult leukemia diagnosed each year, and it is more common among men than women. 

Leukemia is a broad term that describes cancer of the blood or bone marrow. It starts when the DNA of developing blood cells are damaged and the bone marrow makes abnormal cells. The abnormal blood cells are the leukemia cells which grow and divide uncontrollably. Unlike healthy cells that follow a life cycle, the leukemia cells don’t die when they are supposed to so they continue to build up, eventually overcrowding the blood. They crowd out normal white blood cells, red blood cells, and platelets so those normal cells can’t grow and function. Eventually, there are more cancer cells than healthy cells in the blood. The type of leukemia is determined based on which blood cells are affected by the abnormal cells. Leukemia usually affects the white blood cells, called leukocytes, but can occur in other blood cells. There are four main types of leukemia: chronic, acute, lymphocytic, and myelogenous.

Leukemia that grows slowly is called chronic leukemia. The cancer cells form very slowly so the body can also continue to form healthy cells, but over time the cancer cells continue to grow and the leukemia worsens. 

Acute leukemia grows very quickly and gets worse really fast. It has been identified as the most rapidly progressing cancer, and it can develop and grow in a matter of days or weeks.

Lymphocytic leukemia forms in the part of the bone marrow that makes lymphocytes, which are white blood cells that are also immune cells. Chronic lymphocytic leukemia (CLL) is most common in older adults and makes up about 25 percent of adult leukemia cases. It is more common in men than women and is very rare in children. Acute lymphoblastic leukemia (ALL) also affects older adults, but children younger than five have the highest risk of developing it.

Myelogenous leukemia forms in the bone marrow cells that produce blood cells, rather than forming in the actual blood cells. Chronic myelogenous leukemia (CML) accounts for about 15 percent of all leukemia cases in the United States. CML develops mostly in adults and is very rare in children. Acute myelogenous leukemia (AML) is a rare cancer that develops quickly with symptoms of fever, difficulty breathing, and pain in the joints. It can be caused by environmental factors, and develops more often in adults than children, and more often in men than women.

There are also several less common types of leukemia. Most of these types are chronic, and each year in the United States, about 6,000 cases of these less common leukemias are diagnosed.

  • Chronic myelomonocytic leukemia (CMML) develops from myeloid cells.
  • Juvenile myelomonocytic leukemia (JMML) is typically found in very young children and is another type of myeloid leukemia.
  • Acute promyelocytic leukemia (APL) is a subtype of AML.
  • Hairy cell leukemia is slow growing, chronic, and makes too many B cells that appear hairy wen viewed under a microscope.

Leukemia Possible Risk Factors

There are several risk factors linked to leukemia. There are environmental factors and genetic reasons why some people might develop leukemia. Some of the factors can be controlled while others can not. Age, smoking history, and exposure to hazardous chemicals are all possible risk factors. Other risk factors may include exposure to chemicals or medical treatments, personal health history, and family history. Some of the possible risk factors need more study to determine a definite link to leukemia, but being aware of your potential risk is important.

If you were exposed to chemotherapy or radiation therapy for another cancer you have a higher chance of getting leukemia later in life. Also, children who took medications to suppress their immune systems, such as after an organ transplant, may develop leukemia. Exposure to chemicals such as benzene and formaldehyde, often found in cleaning products, hair dyes, and embalming fluid, may also increase your risk of developing leukemia. Smoking and exposure to workplace chemicals like gasoline, diesel and pesticides could also be a risk factor.

There are several syndromes, conditions, and genetic disorders that can also increase leukemia risk. Li-Fraumeni syndrome, a hereditary disorder, is linked to leukemia, and children with Down syndrome have a two to three percent increased risk of developing acute myeloid or acute lymphocytic leukemia. Other genetic disorders that increase leukemia risk are Fanconi anemia, and dyskeratosis congenita (DKC). The inherited immune system conditions ataxia-telangiectasia, Bloom syndrome, Schwachmai-Diamond syndrome, and Wiskott-Aldrich syndrome also increase the risk of leukemia. Risk is also increased in patients with a history of blood disorders such as myelodysplastic syndrome, myeloproliferative neoplasm, and aplastic anemia. There are also viruses, such as the human T-lymphotropic virus (HTLV-1), linked to leukemia.

Family history can also play a role in the development of leukemia. Having a sibling with leukemia is a risk factor, and having an identical twin with leukemia gives you a one in five chance of developing it yourself.

Preventing Leukemia

There are no known ways to prevent leukemia; however, being aware of risk factors and attempting to reduce them could help. Studies have linked leukemia to smoking and obesity, so quitting smoking and having a healthy body weight could help prevent leukemia. In addition, avoiding heavy exposure to dangerous chemicals might decrease your risk.

Signs and Symptoms

There are no reliable early screening methods for leukemia and, especially in chronic leukemia, the symptoms may not be very noticeable early on. Symptoms such as fatigue and fever may not be alarming at first, and could be mistakenly attributed to other causes. Acute leukemia symptoms come on faster and are typically more noticeable. All types of leukemia can have similar symptoms, but the symptoms each individual patient has can help determine the type of leukemia. Any symptoms should be checked by a doctor.

The most common symptoms of leukemia are:

  • Extreme fatigue that doesn’t respond to a good night sleep
  • Enlarged lymph nodes that are swollen and tender as a result of leukemia cells building up
  • Unexplained fever higher than 101 degrees that occurs frequently or lasts more than three weeks with no explanation
  • Night sweats that can also occur during the day, and can drench the sheets through to the mattress
  • Bruising and excess bleeding such as frequent nose bleeds caused by poor blood clotting which is also a symptom
  • Poor blood clotting is apparent when small red or purple spots, called petechiae, appear
  • Abdominal pain occurs when white blood cells accumulate in the liver or spleen
  • Bone and joint pain usually occurs in the hips or sternum where there is a lot of bone marrow that is being crowded by abnormal cells
  • Headaches and other neurological symptoms such as seizures, dizziness, visual changes, nausea, vomiting can occur due to leukemia cells in the fluid around the brain and spinal cord
  • Unintentional weight loss of five percent or more of your body weight in 12 months or less. Weight loss can sometimes be a result of having a swollen liver or spleen which can lead to loss of appetite
  • Frequent infections occur because white blood cells aren’t working properly to fight infections
  • Anemia, or iron deficiency, occurs when there is a lack of hemoglobin in the blood to transport iron in the body. Iron deficiency can cause labored breathing and pale skin. Symptoms of anemia are nausea, fever, chills, night sweats, flu-like symptoms, weight loss, bone pain, and tiredness

Complications from Leukemia

Leukemia can cause several serious complications due to the nature of the disease and treatment. Complications such as life-threatening infections can occur when white blood cells are damaged or reduced. When white blood cells aren’t fully functioning, the body can’t properly fight infections, so any infections a leukemia patient gets, such as urinary tract infections or pneumonia, can become very serious. Low platelet counts make bleeding in areas such as the brain, the lungs, and the stomach or intestines very dangerous, while high white blood cell counts can cause leukemia cells to spill over from the blood into other organs possibly causing respiratory failure, stroke, or heart attack.

There are other complications that are related to specific types of leukemia. Notably, the development of secondary cancers and blood cancers are more likely in CLL patients. Another complication of CLL is called a Richter transformation in which the cells can transform into an aggressive form of lymphoma. Kidney failure can be a treatment-related complication of AML or ALL.

Leukemia Diagnosis 

Leukemia can’t be diagnosed based solely on symptoms, but if leukemia is suspected, in a general exam, the doctor will look for an enlarged spleen or liver and take a blood sample. Further diagnostic testing may include a bone marrow test where a long needle is used to extract marrow from the center of a bone (usually the hip). The bone marrow test will help determine if the patient has leukemia and the type of leukemia.

Staging Leukemia

Staging is used to identify the size and location of cancer in the body. Typically cancers have four stages with Stage I usually indicating the cancer is in one location and is not very large. Stage IV indicates the cancer has grown large and spread far from the original location. Most leukemias aren’t usually staged because they are in the blood and therefore have already spread throughout the body. Instead, leukemia can be considered untreated, active, in remission, or recurrent. The exception is CLL, which can spread through the lymph nodes or the blood or bone marrow, so it does have three stages.

Treatment

The earlier treatment starts for leukemia, the better chance of remission. However, thanks to some exceptional advancements in leukemia treatment medications, doctors are often able to take the time they need to come up with the best treatment plan for each individual with leukemia, even in cases of acute leukemia if life-threatening complications are not present. When coming up with a treatment plan, doctors consider the patient’s age, overall health, and most importantly, the type of leukemia the patient has.

Leukemia treatment options vary for each type of cancer:

Watchful Waiting is used when treatment for slower growing leukemias, such as CLL, may not be necessary;

Chemotherapy is the primary treatment for AML, and sometimes a bone marrow transplant is needed;

Targeted therapies are medications that are tyrosine kinase inhibitors which target cancer cells, but don’t affect healthy cells. Targeted therapies have less side effects. Many CML patients have a gene mutation that responds very well to targeted therapy;

Interferon therapy is a drug that acts similar to a naturally occurring immune response which slows and then stops the leukemia cells. This therapy can cause severe side effects;

Radiation therapy is often used in ALL to kill bone marrow tissue before a transplant is done;

Surgery to remove the spleen may be necessary, depending on the type of leukemia;

Stem cell transplant is effective in treating CML and is usually more successful in younger patients. After chemotherapy or radiation or both are used to destroy the bone marrow, new stem cells are implanted into the bone marrow so noncancerous cells can grow.

Treatment for acute leukemia can take up to two years. It is usually done in phases. In the first phase the goal is to use chemotherapy for several weeks to kill the cancer cells and put the patient in remission. The second phase is designed to kill any remaining cancer cells using chemotherapy or stem cell transplant or both. The treatments and their side effects can be pretty harsh for older patients so researchers have been focusing on finding targeted therapies for acute leukemia, which have fewer side effects. Researchers are also hoping CAR T-cell therapy, which uses the patient’s own immune system to treat cancer, could be an eventual replacement for stem cell replacement therapy in older ALL patients. AML is more aggressive and often harder to treat, but several new targeted medications have been approved to treat AML. Researchers continue to look at other targeted therapy options and other drugs for AML.

In some cases of chronic leukemia, a stem cell transplant might be required, but the main treatment is oral medications that patients will probably take for the rest of their lives. Some research is investigating whether or not patients could potentially stop taking the medications at a certain point. 

CML treatments have really advanced and there are now several drugs that target the abnormal protein that causes CML. Thanks to these targeted medications CML patients now have a close to normal life expectancy and a 90 percent five-year survival rate. Clinical trials are looking at using targeted therapies to treat CLL as well and CAR T-cell therapies are also being considered for CLL treatment.

Recovery and Survival

Leukemia represents 3.5 percent of all new cancer cases in the United States, and it is the seventh leading cause of cancer death. The outlook for leukemia patients depends on which type of leukemia they have, their overall health, and their age. Leukemia is more likely to be fatal in older patients. The average age of those who die from leukemia is 75. However, the many advances in treatment options and medications, such as targeted therapies, have created a better prognosis for many. Leukemia has a 62.7 percent five-year survival rate, and some people with leukemia can now achieve complete remission.

Sources

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Raymaakers, Karen. “Symptoms of Leukemia” Verywell Health, medically reviewed November 1, 2019, https://www.verywellhealth.com/leukemia-signs-and-symptoms-2252435. Accessed March 9, 2020.

“Adult Leukemia: What You Need to Know” Dana-Farber Cancer Institute, updated December 5, 2019, https://blog.dana-farber.org/insight/2019/11/adult-leukemia-five-things-you-need-to-know/. Accessed March 9, 2020.

Wang, Eunice. “How Fast Does Leukemia Develop” Roswell Park Comprehensive Cancer Center, October 4, 2018, https://www.roswellpark.org/cancertalk/201810/how-fast-does-leukemia-develop. Accessed March 9, 2020.

“Reducing Your Risk for Leukemia” Canadian Cancer Society, https://www.cancer.ca/en/cancer-information/cancer-type/leukemia/risks/reducing-your-risk/?region=on. Accessed March 9, 2020.

“Risk Factors for Leukemia” Canadian Cancer Society, https://www.cancer.ca/en/cancer-information/cancer-type/leukemia/risks/?region=on. Accessed March 9, 2020.

Stöppler, Melissa Conrad. “Leukemia” MedicineNet, medically reviewed September 11, 2019, https://www.medicinenet.com/leukemia/article.htm. Accessed March 9, 2020.

“Leukemia Screening” Moffitt Cancer Center, https://moffitt.org/cancers/leukemia/diagnosis/screening/. Accessed March 9, 2020.

“Leukemia — Patient Version” National Cancer Institute, https://www.cancer.gov/types/leukemia. Accessed March 9, 2020.

“Cancer Stat Facts — Leukemia” National Cancer Institute Surveillance, Epidemiology, and End Results Program, https://seer.cancer.gov/statfacts/html/leuks.html. Accessed March 9, 2020.

“Advances in Leukemia Research” National Cancer Institute, June 25, 2019,https://www.cancer.gov/types/leukemia/research. Accessed March 9, 2020.

Acute Myeloid Leukemia: Your AML, Your Treatment, Your Decision

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Acute Myeloid Leukemia: Your AML, Your Treatment, Your Decision from Patient Empowerment Network on Vimeo.

AML experts Dr. Pinkal Desai, Assistant Professor of Medicine at Weill Cornell Medical College and Assistant Attending Physician at the New York-Presbyterian Hospital, and Dr. Tapan M. Kadia Associate Professor, Department of Leukemia at The University of Texas MD Anderson Cancer Center, share research-based insight on how AML is diagnosed, including the symptoms and recommended tests, and disease management strategies.
 
These experts give an overview of currently approved AML therapies and share clinical trial updates on treatments in development. The panel discusses AML management and how you can ask questions and talk to your doctor to feel confident with your care. Additionally, you will hear from an AML patient who shares their experience and advice for approaching the decision-making process.
 

What is Targeted AML Therapy?

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 AML expert, Dr. Jessica Altman, defines targeted AML therapy and outlines available treatment options. Want to learn more? Download the Program Resource Guide here.

Dr. Jessica Altman is Director of the Acute Leukemia Program at Robert H. Lurie Comprehensive Cancer Center of Northwestern University.

See More From The Fact or Fiction? AML Series

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Transcript:

Patricia:

Can you talk a little bit about targeted therapy?

Dr. Altman:

Absolutely. So, targeted therapy – while meant to be specific, because a target is meant to be specific – targeted therapy has become a relatively broad characterization of additional treatments. We think about targeted therapy as the addition of agents that specifically inhibit or target an abnormality associated with the leukemia. The most prominent targeted therapies right now involve specific mutations seen in Acute Myeloid Leukemia. 

For instance, about 30% of adults who have newly diagnosed AML will have a mutation in something called FLT3, or F-L-T-3. There is now an approved drug that is combined with standard intensive induction chemotherapy that improves the
response rate and overall survival in adults with AML with a FLT3 mutation. In addition, there is now an approved agent for relapsed and refractory FLT3 mutating leukemia. 

Patricia:

What about molecular testing? What can you say about that?

Dr. Altman:

Molecular testing is part of the workup for an adult or a child when they’re newly diagnosed Acute Myeloid Leukemia. And molecular abnormalities look for specific known mutations that occur in Acute Myeloid Leukemia cells. 

For instance, that FLT3 that I mentioned. In addition, the IDH mutation. Looking for those mutations has always been important in understanding the prognosis, but it’s now especially important because some specific mutations, we have additional therapies that we can give as part of initial treatment or for relapsed disease that target those mutations. So, not only do they have a prognostic role, but they have a treatment impact as well.

Acute Myeloid Leukemia: Diagnosis & Prognosis

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This podcast was originally published on The Bloodline With LLS on April 22, 2019, here.

 

Join Alicia and Lizette as they speak with Dr. Martha Arellano, Associate Professor of Hematology and Oncology and Program Director of the Hematology and Medical Oncology Fellowship Program at the Winship Cancer Institute of Emory University in Atlanta, Georgia. On this episode, Dr. Arellano defines acute myeloid leukemia (AML) and how it is diagnosed. She addresses questions about cause and prevention and how treatment is determined for younger vs older patients. Dr. Arellano also explains the importance of a patient getting a second opinion to not only increase their education about diagnosis and treatment options but also as a way to move forward with a team they trust.

Financial Assistance: Filling in the Gaps

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This blog was originally published on Bone Marrow & Cancer Foundation here.

Lifeline Fund

The Lifeline Fund provides support to patients who often lack the financial resources necessary to afford the often overlooked living and ancillary expenses that can present considerable financial obstacles—or prohibit the transplant altogether. Funding from the Bone Marrow & Cancer Foundation’s Lifeline Fund helps to cover the myriad costs associated with transplants, such as donor searches, compatibility testing, bone marrow harvesting, medications, home and childcare services, medical equipment, transportation, cord blood banking, housing, and other expenses associated with the transplant. Health insurance often does not cover these vital support services, and many patients cannot afford them on their own.

Open Homes Medical Stays

Our partnership with Airbnb’s Open Homes Medical Stays program provides free temporary accommodations to patients diagnosed with any form of cancer or undergoing a hematopoietic stem cell transplant, as well as housing for their caregivers, family members, and donors.

One-to-One Funds

A One-to-One Fund is a personal fund created for a specific patient. It is a simple and effective way for a patient’s family, friends, and community to raise money on a patient’s behalf with all money raised going directly to their benefit. All donations are tax-deductible. The Bone Marrow & Cancer Foundation administers and maintains the fund, and can offer support with fundraising ideas.

Scholarship Grants

Scholarship Grants help make educational aspirations a reality for bone marrow, stem cell and cord blood transplant survivors. Transplants affect all aspects of life and often prohibit the pursuit of educational opportunities. To address this, the Bone Marrow & Cancer Foundation offers survivors support towards an academic future so their hopes and dreams remain intact. Scholarship Grants support students of all ages as they pursue their educational goals.

Early Detection of Acute Myeloid Leukemia (AML)

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This podcast was originally published by Cancer Cast (Weill Cornell) here.

 

Pinkal Desai, MD – Speaker Bio

How specific gene mutations can enable prediction of acute myeloid leukemia (AML) up to a decade prior to disease development.

Guest: Pinkal Desai, MD, hematologist and medical oncologist at the Weill Cornell Medicine and NewYork-Presbyterian Hospital Leukemia Program.

Host: John Leonard, MD, world-renowned hematologist and medical oncologist at Weill Cornell Medicine and NewYork-Presbyterian Hospital.

How is an AML Treatment Approach Determined?

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 AML expert, Dr. Jessica Altman, discusses the factors she considers when making treatment decisions for patients. Want to learn more? Download the Program Resource Guide here.

Dr. Jessica Altman is Director of the Acute Leukemia Program at Robert H. Lurie Comprehensive Cancer Center of Northwestern University.

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Transcript:

Patricia:     

So, when you’re talking with your patients, what kind of things are you considering when determining how to best treat AML?

Dr. Jessica Altman:    

So, that’s a great question. This is something that is the basis for the entire conversation that I have with my patients and their family members. 

I consider patient goals and patient fitness, other medical conditions, and a lot about the biology of the leukemia. If someone has an acute leukemia that is expected to be highly sensitive to intensive chemotherapy, then that is something that we want to think about. Versus if the patient has a disease that is not expected to be as sensitive to intensive chemotherapy, we frequently like to consider other alternatives in that space.

Patricia:     

So, in terms of options, as a patient what kind of things should I be thinking about when I’m working with you as my doctor about what the best treatment for me might be going forward?

Dr. Jessica Altman:    

So, I think the goal of the initial meetings and the initial consultation between a patient and their healthcare provider is to explore those things. We take a detailed history, understanding patients’ other medical issues. In addition to that, the social history and patients’ goals are very important, as things are not always a yes or no.  

They’re not dichotomous choices. And to be able to understand a patient’s goals, and for the healthcare provider to be able to explain what the intent of treatment is helps both parties come to the right decision for that individual patient.

What Is the Impact of Cytogenetics on AML Care?

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What Is the Impact of Cytogenetics on AML Care? from Patient Empowerment Network on Vimeo.

 Understanding the cytogenetics of your acute myeloid leukemia (AML) can help determine which treatment option might be best for you. Registered nurse Mayra Lee defines this complex term and the role it plays in AML care.

Mayra Lee, RN, is an outpatient clinic nurse at Moffitt Cancer Center. Learn more about Mayra Lee.

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Transcript:

Cytogenetics would be the term that I would say patients are unaware of and don’t understand it quite often. It’s probably the first time you hear it when you come and sit down and we talk about the disease because the first thing you want to know is what is my prognosis and what is the treatment. Well, a lot of that is made through the cytogenetics of the disease.

We use these terms and we don’t often explain what all of that means. And what that means is that the disease itself has chromosomes, has mutations, has genetic information that will help us determine which treatment is a better option for you or is there a genetic mutation that you perhaps have that we now have medications that are used to treat that genetic mutation as a said just a few seconds ago. Like for the three, if you have that mutation, we now have medication to treat that where we didn’t have that five years ago or even four years ago.

 So, that terminology of cytogenetic and biomarkers are very new. They’re not something that the general public knows or understands very well.

But when you come to academic centers like where I’m at right now that is all we’re going to talk to you about because we want to do personalized medicine. And personalized medicine means what is it that your disease looks like because your disease does not look like the other AML patients. Your disease is your disease and it looks different and it’s going to behave differently. And so, we want to know about those mutations. So, so much of your treatment, so much of the prognosis is so closely linked to that that I think it’s an important thing to know. It’s important to understand it. It’s important to ask. It’s important to pause your doctor and your nurses and say, “I don’t understand what you mean by that. What does that word mean? Can you explain that to me?”

AML Genetic Testing: Could It Lead to a Targeted Treatment for You?

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AML Genetic Testing: Could It Lead to a Targeted Treatment for You? from Patient Empowerment Network on Vimeo. 

AML expert, Dr. Pinkal Desai, outlines the reasoning behind the necessity of cytogenetics and molecular testing when managing an AML diagnosis. Want to Learn More? Download Your AML Navigator Resource Guide, here.

Dr. Pinkal Desai is an Assistant Professor of Medicine at Weill Cornell Medical College and Assistant Attending Physician at the New York-Presbyterian Hospital. More about this expert here.

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Transcript:

Dr. Pinkal Desai:         

So for patients who are undergoing molecular testing or any diagnosis of AML, both cytogenetics and molecular profiling are important, so they do not supersede each other. This is the conglomerate information that we need from the diagnosis to make important medical decisions. Usually the diagnosis would include: looking at the cells under the microscope by the pathologist; flow cytometry, which is a way to identify the subtype of leukemia; chromosomes or karyotypic analysis, which is to look at the individual chromosomes and whether they are abnormal in these leukemia cells; and the last one would be the molecular mutations, which would be single-gene profiling of the leukemia cells.

All of these are important, and it’s not that one can be omitted. They’re all part and parcel of the diagnosis of AML, and all of them should be done.  

So my advice to patients whenever this topic comes up of molecular mutations is always an unequivocal – there should be no question that this should not be done. The advice is plain and simple. This has to be done at diagnosis and, in certain cases, at relapse as well in order to figure out the best treatment possible. If they’re at a site or a clinic where this molecular testing is not available, then they should seek a second opinion to a site that would do this testing because in this day and age of leukemia, there is no treatment and diagnosis that can be done without all of these components in place.

In the old days, we didn’t have a lot of treatment in AML. It was either chemotherapy or hypomethylating agents, and that’s it. But now we have several drugs, five or six of them, that were just approved in the past two years specifically for leukemia and targeting some of these mutations. We have Midostaurin, Gilteritinib, Ivosidenib, Enasidenib, and I don’t want to go on and on about these drugs, but the most important thing is that in this day and age where you have so many drugs, how to incorporate these drugs into the management for patients, both upfront and in the relapse setting, it’s extremely relevant to do this testing, and this is highly encouraged and should be done as part of the diagnosis and treatment.

What’s Next in AML Treatment and Research?

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What’s Next in AML Treatment and Research? from Patient Empowerment Network on Vimeo.

Dr. Pinkal Desai, an AML specialist, discusses research in-progress on MRD testing and pre-disease mutations in leukemia.

Dr. Pinkal Desai is an Assistant Professor of Medicine at Weill Cornell Medical College and Assistant Attending Physician at the New York-Presbyterian Hospital. More about this expert here.

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Transcript:

Dr. Pinkal Desai:         

So we at Weill Cornell are a big leukemia center, and we are leading a lot of the clinical trials in AML, both in the upfront and the relapse setting. There are several research initiatives that we are highly interested in. One of them is how to incorporate some of these targeted treatments, both in the upfront and in the relapse setting.

The most important one that we’re actively working on is to monitor these patients, so MRD testing, or minimal residual testing, is extremely relevant in order to figure out whether the treatments are working in the right fashion, and would you change treatment or would it impact the patient’s overall survival if some of these mutations persist or not.

And we are really interested in monitoring these patients and these mutations to figure out a plan which is targeted not only for the mutation but also for the specific patient, and that is one of the things that we are very interested in and doing at Cornell.

We’re also looking at pre-disease mutations. There are several mutations – this is personally my research interest as well – there are certain people who are at risk of developing leukemia; for example, people who are undergoing chemotherapy for other cancers, and the presence of some of these mutations before the diagnosis of leukemia would highly be relevant because if we’re monitoring some of these people and figuring out who can develop this leukemia and can you do something about it, so this is sort of more on the prevention aspect of leukemia or secondary leukemia, which is also something we are interested in at Cornell and ongoing research is for us.

But the most important things is obviously for patients who actually have the diagnosis of AML, the best available agents as part of clinical trials, the best way to monitor them and design treatments so that we can achieve the best possible results for the patient is what we are striving for at Cornell, and it would be extremely helpful for patients to enroll into these trials and contribute both to their own treatment outcomes and also to the AML community at large.

Facing Acute Myeloid Leukemia: Notes from a Survivor

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In the spring of 2016, I was looking forward to a final year of teaching sociology before a retirement promising new adventures.  I felt great and had no reason to think I had any health problems.  When my doctor suggested some routine blood work, I readily complied.  When the results showed abnormally low white blood cell counts and he recommended a hematologist, I readily complied. When the hematologist ordered a bone marrow biopsy, I still readily complied.  When the results came in, my life changed forever.

The biopsy revealed that I had acute myeloid leukemia. Since this disease can kill within months, they recommended immediate treatment. The next day I checked into a hospital and started chemotherapy.  I received the standard treatment for this disease for the preceding 40 years: a “7 + 3” cocktail of cytarabine and idarubicin.  I spent five and a half weeks in the hospital dealing with various infections brought on by immunosuppression and patiently waiting for my blood counts to recover. As they did, I received the best possible news. The chemotherapy had achieved a temporary remission that bought me time to explore my options for longer term treatment.

As I awaited the molecular and cytogenic data on my cancer, I was told to expect two possibilities.  If there was a relatively low risk of relapse, I might get by with additional chemotherapy. If there was a high risk of relapse, a stem cell transplant was in order. When the results placed me in an intermediate risk category, I had a tough choice to make. After researching my options, getting second opinions, gathering advice, and reading my doctor’s cues, I settled on the transplant.  My logic was that if I opted for more chemo and it didn’t work out, I would deeply regret not having the transplant.  If I had the transplant and it didn’t work out, at least I would feel as if I gave it my best shot and it just wasn’t meant to be. Despite the 15-20% mortality rate from the transplant itself, I was at peace with my decision to proceed.

My benefactors were two anonymous sets of parents who had donated their newborn infants’ umbilical cords to a transplant bank.  Once we found two good matches, the cords were shipped to my transplant hospital, the cord blood was extracted, and it was transfused into my bloodstream. These stem cells just “knew” where to go to engraft in my bone marrow and begin producing a healthy new immune system.  For the second time, I received the best possible news. Three weeks after transplant, one of my donor’s cells were 99% engrafted. With that result, I returned home for a prolonged recovery.

For the next few weeks, I faced daily clinic visits, blood tests, transfusions of platelets and red blood cells, growth factor injections, and lingering effects of my conditioning chemotherapy and radiation as well as the engraftment process itself. As the weeks turned into months, my recovery proceeded apace.  It eventually became clear that I could claim the best possible news for the third time, as my new cells and old body got along with each other and there was no evidence of graft-vs.-host disease.  Looking back over the entire process, my oncologist summarized it by saying “this is as good as it gets.”

Many people wanted to give me credit for surviving this disease. While it is tempting to claim such credit, I remain agnostic about whether anything I did had a material effect on my positive outcome. I think my survival was largely a matter of luck, chance, and random variation across AML patients. Nonetheless, there were several practices I engaged in throughout my treatment that deserve mention. At the very least, they brought me peace during a difficult time. And at the most, they may indeed have contributed to a positive outcome for which I am eternally grateful.

The first set of practices that sustained me was mindfulness, meditation and yoga.  To the greatest extent possible, these practices helped me let go of ruminations about the past or fears about the future and focus on the present moment.  Focusing on my breathing kept me centered as – like my breaths – each moment flowed into the next.  Maintaining a non-judgmental awareness and acceptance of each passing moment kept my psyche on an even keel.

Rather than extended periods of formal meditation, I simply sought a mindful awareness of each moment, hour, day and week.  I also went through a daily yoga routine even while receiving chemotherapy. Doing so helped me retain my identity as I weathered the toxic treatment and its inevitable side-effects.  In the evenings, I used a technique called a body scan to relax and prepare me for a peaceful sleep. The cumulative effect of these practices was a calm acceptance of circumstances I could not change alongside a serene hope that all would work out for the best.

A second practice involved being a proactive patient.  Perhaps it was my training as a social scientist that allowed me to bring an analytical curiosity to my disease and the treatments my doctors were deploying. I asked lots of questions during their all too brief visits, and they patiently responded to all my queries.

On several occasions, my proactive stance made a positive contribution to my treatment.  When I developed a nasty, full body rash, it took a collaborative conversation between me, my oncologist, and infectious disease doctors to isolate the one drug among so many that was the culprit. I identified it, they switched it out, and the rash abated. On another occasion, I was able to identify two drugs that were causing an unpleasant interaction effect.  I suggested changing the dosing schedule, they concurred, and the problem resolved.  The sense of efficacy I received from this proactive stance also helped me retain a positive mood and hopeful stance during my prolonged treatment.

A third practice involved maintaining a regimen of physical activity.  During my first, five-week hospital stay, I felt compelled to move and get out of my room for both physical and social reasons.  I developed a routine of walking the halls three times a day, trailing my IV pole behind me.  They tell me I was walking roughly 5 miles a day, and every excursion felt like it was keeping my disease at bay and connecting me with all the nurses and staff members I would encounter as I made my rounds.

When I moved to my transplant hospital, I was confined to my room but requested a treadmill that met the physical need for activity even as I sacrificed the social benefits of roaming the halls.  But throughout both hospital stays and later at home, I maintained stretching activities, exercise workouts, physical therapy routines, and yoga to keep my body as active and engaged as my circumstances would allow. These activities also gave me a welcome sense of efficacy and control.

A fourth practice involved maintaining my sense of humor.  I have always appreciated a wide variety of humor, ranging from bad jokes, puns and double entendre to witty anecdotes and stories to philosophical musings.  Cancer is anything buy funny, which is precisely why humor has the power to break through the somber mood and fatalistic worldview that so often accompanies the disease.  Using humor became another way of keeping the cancer at bay.  It was a way of saying you may make me sick and eventually kill me, but I’m still going to enjoy a good laugh and a bad joke along the way.

Alongside these practices I could control, there were also beneficial circumstances beyond my control that worked in my favor.  These included the privilege of being a well-educated white male that led to my being treated respectfully and taken seriously by all my health care providers.  In addition, my doctors and nurses consistently combined skill and expertise with compassion and empathy in ways I will never forget or could ever repay. And finally, my privileged status and excellent care played out against a backdrop of strong social support from a dense network of family, friends, colleagues and neighbors.

A final practice that integrated everything else was writing my story as it unfolded. Upon my first hospitalization, I began sending emails to an ever-expanding group of recipients documenting and reflecting upon my disease, treatment and recovery.  Narrating my story for others required me to make sense of it for myself.  The ostensible goal of keeping others informed became a powerful therapeutic prod for my own understanding of what was going on around me and to me.  While my doctors’ ministrations cured my body, my writing preserved my sense of self and a coherent identity.

I eventually sent over 60 lengthy reports to a group of roughly 50 recipients over a 16-month period.  This writing would eventually serve three purposes.  It was a sense-making procedure for me. It was a communication vehicle with my correspondents. And finally, I realized it could be a resource for others in the broader cancer community. With that insight, I did some additional writing about lessons learned and identity transformations and published the resulting account.

As I mentioned at the start, I will never know if any of these practices or circumstances made a material contribution to my survival.  But they maintained my sanity and preserved my identity during the most challenging experience of my life. Regardless of the eventual endings of our journeys, sustaining and nurturing ourselves along the way is a worthy goal in itself.