From Physician to Patient: Navigating Chronic Lymphocytic Leukemia Treatment
Dr. Edward Ratner, a 68-year-old internist, geriatrician and associate professor of medicine at the University of Minnesota, finds deep fulfillment in treating patients and helping them recover from illness or injury. In 2015, this dedication became personal when he was diagnosed with chronic lymphocytic leukemia (CLL), a cancer affecting the blood and bone marrow. Faced with his diagnosis, Dr. Ratner utilized his medical expertise to navigate his journey.
“As a physician, I’m used to caring for others, but when I was diagnosed with a serious disease of my own, I began imagining worst-case scenarios,” he said. “I realized I needed to shift my mindset from treating patients to becoming an informed patient myself.”
With his medical background, experience in advising others, and familiarity with medical research, Dr. Ratner worked closely with his oncologist to make an informed decision about his treatment plan. Because CLL is a slow-growing cancer, and many people with early-stage CLL do not experience significant symptoms, doctors may recommend a “watch and wait” approach: closely monitoring disease progression but not starting treatment immediately to avoid unnecessary side effects.
“My oncologist explained that I might not need treatment for many years, if at all, and instead recommended routine monitoring of my CLL,” said Dr. Ratner. “While this approach made logical sense, it was emotionally challenging, especially in the days prior to follow-up blood testing.”
From “Watching” to "Treating”
For more information about CLL and VENCLEXTA, visit www.venclexta.com.
The information in this story is specific to one patient’s experience and is not a substitute for consulting your own doctor. If you have CLL, talk to your doctor about your individual symptoms and potential treatment options.
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Seven years after his diagnosis, Dr. Ratner’s symptoms worsened and, at his oncologist’s recommendation, he decided to pursue treatment. “Fortunately, the advancements in treatments since my diagnosis in 2015 provided me with several promising options to consider,” he said.
Together with his oncologist, Dr. Ratner decided on a chemotherapy-free treatment regimen of oral VENCLEXTA® (venetoclax) plus GAZYVA® (obinutuzumab) infusion. VENCLEXTA is a targeted medicine designed to selectively bind and inhibit the 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. Venetoclax is designed to block the BCL-2 protein and work to help restore the process of apoptosis. The combination of VENCLEXTA and GAZYVA, approved by the FDA for adults with previously untreated CLL, is taken for a fixed duration of time (12 months), unlike some other cancer medicines that are taken until unacceptable toxicity or until disease progression, which, in the case of CLL, can take many years. VENCLEXTA may cause serious side effects, including tumor lysis syndrome, low white blood cell counts, and infections. In the clinical trial of VENCLEXTA plus GAZYVA, the most common adverse reactions were low white blood cell count, diarrhea, fatigue, nausea, low red blood cell count, and upper respiratory tract infection. Learn more about the approved use and safety information for VENCLEXTA (venetoclax tablets; 10mg, 50mg, 100mg) at the end of this article.
“My oncologist recommended VENCLEXTA plus GAZYVA based on a variety of factors, such as my overall health, genetics of my CLL cells, and my preferences. After reading about this treatment, getting a second opinion, and talking to others who had been treated for CLL, I decided this time-limited regimen was the right option for me,” said Dr. Ratner. “Choosing between treatment options is challenging because each person’s condition is unique. It’s important to thoroughly research and consider all aspects.”
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As a physician, I’m used to caring for others, but when I was diagnosed with a serious disease of my own, I began imagining worst-case scenarios
In the early years following Dr. Ratner’s CLL diagnosis, only his wife and a close friend were made aware. Even while facilitating a local CLL Society support group, he kept his condition private from most people outside the group. However, once he began treatment, he decided to share his diagnosis with a broader circle, including loved ones, friends and colleagues. Now, Dr. Ratner openly shares his experience to help others learn about CLL and available treatment options.
“I kept my diagnosis mostly private for about five years because I didn't want to burden others, including my aging mother, with worry,” Dr. Ratner shared. “However, starting treatment can be daunting. When planning treatment, sharing my story with my family, friends and a few selected co-workers expanded my network of support...I no longer needed to explain and justify why my CLL didn’t require treatment right away.”
Dr. Ratner encourages others facing a CLL diagnosis to not only rely on their oncology healthcare team members but also to actively seek out information and assistance from various other sources. “Surround yourself with loved ones, support groups, and others that can provide both emotional and practical assistance,” he said. “It's important to seek and accept help on this journey and its inevitable challenges.”
Embracing Support and Empowering Others
– Dr. Edward Ratner, CLL patient
VENCLEXTA USE
VENCLEXTA is a prescription medicine used to treat adults with chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL).
It is not known if VENCLEXTA is safe and effective in children.
IMPORTANT SAFETY INFORMATION
What is the most important information I 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.
Before taking VENCLEXTA, tell your healthcare provider about all of your medical conditions, including if you:
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:
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.
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. For more information, ask your healthcare provider or pharmacist.
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 genentechaccess.com/patient/brands/venclexta for assistance.
Please see full Prescribing Information, including Medication Guide at https://www.rxabbvie.com/pdf/venclexta.pdf.
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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.
•
•
•
•
•
•
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.
References
1.
2.
American Cancer Society (2024). What is chronic lymphocytic leukemia? Accessed November 20, 2024. https://www.cancer.org/cancer/types/chronic-lymphocytic-leukemia/about/what-is-cll.html
Leukemia & Lymphoma Society. Watch and wait. Accessed November 20, 2024. https://www.lls.org/leukemia/chronic-lymphocytic-leukemia/treatment/watch-and-wait
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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.
VENCLEXTA USE
VENCLEXTA is a prescription medicine used to treat adults with chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL).
It is not known if VENCLEXTA is safe and effective in children.
IMPORTANT SAFETY INFORMATION
What is the most important information I 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.
Before taking VENCLEXTA, tell your healthcare provider about all of your medical conditions, including if you:
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:
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.
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. For more information, ask your healthcare provider or pharmacist.
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 genentechaccess.com/patient/
brands/venclexta for assistance.
Please see full Prescribing Information, including Medication Guide at https://www.rxabbvie.com/pdf/
venclexta.pdf.
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.
•
•
•
•
•
•
•
•
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.
References
1.
2.
3.
4.
5.
•
•
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.
By Monica Vanover on May 5, 2025
By Monica Vanover on May 5, 2025