That phrase can send a chill up anyone's spine, and instill a sense of overwhelming confusion, and even panic, according to Victor Gonzalez, senior director of patient programs and support services at The Lymphoma Research Foundation in New York City. He helps people deal with the impact that a blood cancer diagnosis can have on their lives and their loved ones. Victor has seen a wide array of reactions due to a cancer diagnosis, not just in his work as a patient advocate, but also as a son. Victor's own mother was diagnosed with aggressive stomach cancer. He and his family scrambled to support her and get her care.
Gonzalez himself was also recently diagnosed with Barrett's esophagus, a condition that raises the risk of developing cancer. The combination of these health events in his family has made him even more aware of how patients feel after a life-altering diagnosis. In his work with lymphoma and leukemia patients, he's witnessed the reactions of those diagnosed with a blood cancer, such as chronic lymphocytic leukemia (CLL).
"It's a shock, and a huge wake-up call that your life is about to change," he says. "You want to be prepared, but there's a certain level of paralysis anyway. What helps is getting more information, and part of that is understanding the experience of other patients and hearing about what gives them hope."
Although everyone's CLL journey is different, there tend to be shared milestones that can give patients a sense of progress, as well as resilience, when navigating treatment options. Here's what Gonzalez sees as bright lights along the CLL path.
WHEN SOMEONE GETS a CLL diagnosis, time seems to stop, says Gonzalez. It can be easy to feel disheartened and even fearful.
However, making sure to focus on your mental health in multiple ways can help you stay more positive. These can include things like spending time with friends and family, learning about the disease, and reading about available treatment options. "In the 12 years I've been a patient resource, I've seen how hard it can be to stay optimistic," he says. "But I've also seen instances where patients who are generally more positive do better when it comes to treatment. It can make a real difference from what I've observed."
Focusing on notable milestones can be a helpful first step, he adds. Maybe you're looking forward to your teen's high school graduation, or there's a wedding or holiday gathering coming up that will bring everyone together. "Keeping such important events in mind can be a way to take a deep breath and remember that you may be navigating through cancer, but you are not your cancer," Gonzalez says.
FOR MANY PATIENTS, going through CLL treatment isn't just about taking care of their health, it's an opportunity to be more mindful about what they do every day, says Gonzalez. He often sees people leap into a new profession or hobby after their cancer diagnosis, even though they hadn't previously felt empowered to try different things.
Some become motivational speakers or patient advocates like him, he says, while others simply spend more time with their families, feeling a deep sense of purpose from that shift. Others enroll in clinical trials to participate in the development process of new and potentially promising therapies as a way to contribute to science, which can help advance the overall CLL treatment landscape.
"I've had patients who described cancer as an opportunity to evaluate what's meaningful in your life," Gonzalez notes. "For many people, cancer lights a fire in them to take care of their mental health as much as their physical health, and that means reflecting on what's important."
ONE THING THAT he says helps patients stay positive is the knowledge that therapeutic options are expanding. In the past, those with CLL could only look to chemotherapy. "The treatment landscape has evolved and changed so much over the past few years," says Gonzalez. "If you look at the past five or six years alone, so many things have been happening. I think for a lot of CLL patients, knowing that there are treatment approaches out there, including BCL-2 inhibition, is promising."
BCL-2 inhibitors are designed to target B-cell lymphoma 2, a type of protein that's observed at higher levels in certain types of cancers. By attaching to these proteins, BCL-2 inhibitors help restore apoptosis, the body's natural process of breaking down old or damaged cells, including cancerous ones. They alter the way this protein operates in the body and shut down what cancer cells need for growth, causing them to die. The only FDA-approved BCL-2 inhibitor for the treatment of CLL is VENCLEXTA (venetoclax tablets; 10mg, 50mg, 100mg; learn more about approved use and safety information).
This is an important option to explore, Gonzalez believes. With VENCLEXTA (an AbbVie product) as a treatment option, patients can be treated for a defined period of time.
"For CLL patients looking to experience time off treatment, you should consider speaking with your doctor about the chemo-free treatment regimen of oral VENCLEXTA plus GAZYVA (obinutuzumab) infusion, which can be completed in about one year," Gonzalez says. "Living with a blood cancer like CLL, it's important to arm yourself with as much knowledge as possible and become an active participant in your care. Part of that is understanding treatment options like VENCLEXTA, because that may help empower you."
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.
* 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.
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 genentech-access.com/patient/brands/venclexta for assistance.
Please see full Prescribing Information, including Medication Guide at https://www.rxabbvie.com/pdf/venclexta.pdf.
VENCLEXTA and its design are registered trademarks of AbbVie Inc.
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