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Lasting Legacy: A Story of Perseverance, Partnership and Giving Back to the Blood Cancer Community

This is the story of Dave, who, along with his wife Dawn, shared his journey with acute myeloid leukemia (AML) – from diagnosis and clinical trial experience to remission. Since being interviewed, Dave passed away. To continue Dave’s legacy, Dawn keeps sharing his journey with AML as an inspiration to people with cancer, their caregivers and the scientific community.

AML is the most common type of aggressive leukemia in adults and has the lowest survival rate of all types of leukemia.1 AML is a cancer that starts in the bone marrow but can spread quickly to the blood and other parts of the body.2 About 20,000 people are estimated to receive an AML diagnosis in the United States in 2023.3

Copy Of Dave Dawn Family 2Courtesy Dave
Dave (center), Dawn (left), surrounded by their family

I felt like a car running out of gas.”

One day, Dave, who lived with his wife Dawn near Denver, started feeling like he could barely put one foot in front of the other. In his words, he felt like a car running out of gas, getting weaker every day until he could hardly walk. He called his family doctor, who immediately sent him to the emergency room, where he underwent six hours of inconclusive tests. He went home that night without any answers, but he didn’t have to wait long to receive one.

The next day, his doctor called bearing a difficult update: “Dave, I have bad news. You have cancer – acute myeloid leukemia.”

Diagnosis and Determination

Dave went for additional testing with the hopes of obtaining new information that would point to another reality. However, the additional tests came to the same conclusion: Dave had AML. Although he had a general understanding of cancer, he knew almost nothing about AML. He asked about the stage of his cancer, but was told that, in his case, it didn’t matter since it had spread throughout his entire body. Dave was told to get his affairs in order because his doctors were unsure how long he had to live.

He gathered the courage to share the news with Dawn, whom he had been married to for nearly 50 years. She was certain there must have been a mistake – a mix-up with the blood work – but there was no mistake. “I was in complete denial,” Dawn said. “I cried all night… but, the next day, we decided that we were going to beat this as a team.”

Taking a Leap of Faith with a Clinical Trial

Given Dave’s age and history of coronary artery disease, coupled with the typically aggressive nature of AML, he was deemed ineligible for intensive chemotherapy. With his treatment options limited, he had little time to act. When presented with an opportunity to enroll in a clinical trial, Dave was eager to participate. The study was being conducted by a clinical research team at a local university. If Dave participated, he would be given low-dose chemotherapy along with an investigational oral treatment that was not yet approved by the FDA at the time of the trial – VENCLEXTA® (venetoclax tablets; 10mg, 50mg, 100mg; learn more about approved use and safety information) – for a fixed duration of time. The trial was being conducted to evaluate the medicine as an additional treatment option for AML, which at the time was only treated with chemotherapy.

After discussing the benefits and risks with the clinical research team, Dave and Dawn took the brave step of enrolling Dave in the trial, as they recognized the critical role he could play in helping learn more about this investigational treatment for AML.

“Dave took a leap of faith participating in the study. He felt he had nothing to lose and might be able to contribute to research that could help patients with AML in the future,” explained Dawn.

Dave started treatment with low-dose chemotherapy and VENCLEXTA. As often happens with a new treatment cycle, Dave experienced a variety of side effects, including tiredness, lethargy and a rash. But he slowly regained his strength over time. As part of the trial, Dave underwent regular testing to evaluate any potential reduction in his cancer. When his care team was unable to detect cancer cells in his bone marrow, he was told he was in remission.

Copy Of Dave Garden 1Courtesy Dave
Dave in his garden

Spreading Hope to Others with a Blood Cancer Diagnosis

At the time Dave and Dawn shared this story, they were celebrating his remission – something that had seemed impossible when he was diagnosed with AML.

During that time, Dave looked at each day as a gift. He was able to enjoy many hobbies, including crafting in his workshop, fixing up his home, and spending time with Dawn and their grandchildren. Dave and Dawn were grateful for his health and were determined to pay it forward by supporting others facing a tough cancer diagnosis. Dave dedicated his time to sharing his own diagnosis and AML treatment journey. He participated in podcasts and was interviewed by media outlets where he told his story. Although different people have different treatment experiences and results, Dave’s mission became offering hope to others navigating blood cancer.

Even after Dave completed the clinical trial, he continued to provide bone marrow samples every six months to help researchers better understand AML.

“Giving bone marrow was painful, but Dave said he would do it even more frequently if it could help scientists and doctors learn more about how the treatment he received worked, so other patients with AML could have the possibility of a positive outcome,” said Dawn, recounting Dave’s optimism.

During hospital visits to donate bone marrow, the couple often met others in the waiting room who were facing a difficult diagnosis of their own or that of a loved one.

“Dave could tell by their downcast expressions that they were envisioning a future without a solution, and that is when he would share his own story,” Dawn recalled. “He wanted to offer them hope about what science can achieve.”

Since Dave’s passing, Dawn continues to share his story. She wants to carry on his legacy and offer hope to others navigating a cancer diagnosis and treatment.

“I cherish Dave’s legacy and passion for helping others. His determination and compassion will help others benefit for years to come,” said Dawn.

For more information about AML, visit https://www.venclexta.com/aml.

About Genentech in Hematology

For more than 20 years, Genentech has been developing medicines with the goal to redefine treatment in hematology. Today, we’re investing more than ever in our effort to bring innovative treatment options to people with diseases of the blood.

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About VENCLEXTA

VENCLEXTA is a first-in-class targeted medicine designed to selectively bind and inhibit the B-cell lymphoma-2 (BCL-2) protein. In some blood cancers and other tumors, BCL-2 builds up and prevents cancer cells from dying or self-destructing, a process called apoptosis. VENCLEXTA blocks the BCL-2 protein and works to help restore the process of apoptosis.

VENCLEXTA is being developed by AbbVie and Genentech, a member of the Roche Group. It is jointly commercialized by the companies in the United States and commercialized by AbbVie outside of the United States. Together, the companies are committed to research with VENCLEXTA, which is currently being studied in clinical trials across several types of blood cancers.

VENCLEXTA Indications

VENCLEXTA is a prescription medicine used:

  • to treat adults with chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL).
  • in combination with azacitidine, or decitabine, or low-dose cytarabine to treat adults with newly diagnosed acute myeloid leukemia (AML) who:
    • are 75 years of age or older, or
    • have other medical conditions that prevent the use of standard chemotherapy.

It is not known if VENCLEXTA is safe and effective in children.

Important Safety Information

What is the most important information patients should know about VENCLEXTA?

VENCLEXTA can cause serious side effects, including:

Tumor lysis syndrome (TLS). TLS is caused by the fast breakdown of cancer cells. TLS can cause kidney failure, the need for dialysis treatment, and may lead to death. Your healthcare provider will do tests to check your risk of getting TLS before you start taking VENCLEXTA. You will receive other medicines before starting and during treatment with VENCLEXTA to help reduce your risk of TLS.
You may also need to receive intravenous (IV) fluids into your vein. Your healthcare provider will do blood tests to check for TLS when you first start treatment and during treatment with VENCLEXTA. It is important to keep your appointments for blood tests. Tell your healthcare provider right away if you have any symptoms of TLS during treatment with VENCLEXTA, including fever, chills, nausea, vomiting, confusion, shortness of breath, seizures, irregular heartbeat, dark or cloudy urine, unusual tiredness,
or muscle or joint pain.

Drink plenty of water during treatment with VENCLEXTA to help reduce your risk of getting TLS. Drink 6 to 8 glasses (about 56 ounces total) of water each day, starting 2 days before your first dose,
on the day of your first dose of VENCLEXTA, and each time your dose is increased.

Your healthcare provider may delay, decrease your dose, or stop treatment with VENCLEXTA if you have side effects. When restarting VENCLEXTA after stopping for 1 week or longer, your healthcare provider may again check for your risk of TLS and change your dose.

Who should not take VENCLEXTA?

Certain medicines must not be taken when you first start taking VENCLEXTA and while your dose is being slowly increased because of the risk of increased TLS.

  • Tell your healthcare provider about all the medicines you take, including prescription and over-the- counter medicines, vitamins, and herbal supplements. VENCLEXTA and other medicines may affect each other causing serious side effects.
  • Do not start new medicines during treatment with VENCLEXTA without first talking with your healthcare provider.

Before taking VENCLEXTA, tell your healthcare provider about all of your medical conditions, including if you:

  • have kidney or liver problems.
  • have problems with your body salts or electrolytes, such as potassium, phosphorus, or calcium.
  • have a history of high uric acid levels in your blood or gout.
  • are scheduled to receive a vaccine. You should not receive a “live vaccine” before, during, or after treatment with VENCLEXTA, until your healthcare provider tells you it is okay. If you are not sure about the type of immunization or vaccine, ask your healthcare provider. These vaccines may not be safe or may not work as well during treatment with VENCLEXTA.
  • are pregnant or plan to become pregnant. VENCLEXTA may harm your unborn baby. If you are able to become pregnant, your healthcare provider should do a pregnancy test before you start treatment with VENCLEXTA, and you should use effective birth control during treatment and for 30 days after the last dose of VENCLEXTA. If you become pregnant or think you are pregnant, tell your healthcare provider right away.
  • are breastfeeding or plan to breastfeed. It is not known if VENCLEXTA passes into your breast milk. Do not breastfeed during treatment with VENCLEXTA and for 1 week after the last dose.

What should I avoid while taking VENCLEXTA?

You should not drink grapefruit juice or eat grapefruit, Seville oranges (often used in marmalades), or starfruit while you are taking VENCLEXTA. These products may increase the amount of VENCLEXTA in your blood.

What are the possible side effects of VENCLEXTA?

VENCLEXTA can cause serious side effects, including:

  • Low white blood cell counts (neutropenia). Low white blood cell counts are common with VENCLEXTA, but can also be severe. Your healthcare provider will do blood tests to check your blood counts during treatment with VENCLEXTA and may pause dosing.
  • Infections. Death and serious infections such as pneumonia and blood infection (sepsis) have happened during treatment with VENCLEXTA. Your healthcare provider will closely monitor and treat you right away if you have a fever or any signs of infection during treatment with VENCLEXTA.

Tell your healthcare provider right away if you have a fever or any signs of an infection during treatment with VENCLEXTA.

The most common side effects of VENCLEXTA when used in combination with obinutuzumab or rituximab or alone in people with CLL or SLL include low white blood cell counts; low platelet counts; low red blood cell counts; diarrhea; nausea; upper respiratory tract infection; cough; muscle and joint pain; tiredness; and swelling of your arms, legs, hands, and feet.

The most common side effects of VENCLEXTA in combination with azacitidine or decitabine or low-dose cytarabine in people with AML include nausea; diarrhea; low platelet count; constipation; low white blood cell count; fever with low white blood cell count; tiredness; vomiting; swelling of arms, legs, hands, or feet; fever; infection in lungs; shortness of breath; bleeding; low red blood cell count; rash; stomach (abdominal) pain; infection in your blood; muscle and joint pain; dizziness; cough; sore throat; and low blood pressure.

VENCLEXTA may cause fertility problems in males. This may affect your ability to father a child. Talk to your healthcare provider if you have concerns about fertility.

These are not all the possible side effects of VENCLEXTA. Call your doctor for medical advice about side effects.

You are encouraged to report side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

If you cannot afford your medication, contact genentech-access.com/patient/brands/VENCLEXTA for assistance.

Please see the VENCLEXTA full Prescribing Information, including the Medication Guide, for additional Important Safety Information.

References:

  1. American Cancer Society. 2022 Cancer Facts and Figures. https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-and-figures/2022/2022-cancer-facts-and-figures.pdf. Accessed August 29, 2022.
  2. American Cancer Society. What is Acute Myeloid Leukemia? https://www.cancer.org/cancer/acute-myeloid-leukemia/about/what-is-aml.html. Accessed August 29, 2022.
  3. American Cancer Society. Key Statistics for Acute Myeloid Leukemia (AML). https://www.cancer.org/cancer/acute-myeloid-leukemia/about/key-statistics.html. Accessed February 21, 2023.