This post was developed in collaboration with Novartis
Virginia was in her late 40s when she began getting upset stomachs on and off throughout the week. Active and health conscious–her nieces and nephews call her “nuts and berries”–Virginia thought she might be perimenopausal. “When I asked my older sister if my stomach problem could be related, she said, ‘Sometimes, but everyone is different,’” Virginia recalled. After a couple of months, it got to the point where she could eat only half her meal because her stomach was burning pretty intensely, and she felt nauseous.
Between jobs, Virginia had insurance but didn’t have a primary care doctor, so she took herself to the ER in a hospital near her home in Southern California. There she learned her white blood cell count, normally around 10K, had shot up to 700K, and her spleen had enlarged to over four times its normal size. With that came the news that Virginia had Philadelphia chromosome–positive chronic myeloid leukemia in chronic phase, or Ph+ CML, which is a cancer of cells in the blood and bone marrow that starts with a gene mutation called the Philadelphia (Ph) chromosome. This triggers the bone marrow to grow abnormal white blood cells uncontrollably. A form of leukemia most often diagnosed in people over 60, it can occur in younger adults, as it did with Virginia.
“My spleen had been taking on all of the cancer, which is very uncommon, and it extended from the top of my rib cage to my groin. It was laying on top of my stomach and my intestines, which was impacting my digestion. I was lucky it didn’t erupt,” Virginia said. It took 10 days of intense chemotherapy to get her white blood cell count to a place where she could be released from the hospital. “I was devastated. I was scared. I had no idea about my future,” Virginia remembered.
“When the ER oncologist walked into the room and told me that CML is slower growing and easier to treat than some other forms of cancer, I felt a little better,” Virginia said. “‘We’re going to figure this out, and you’re going to be okay,’” said the oncologist, who has remained Virginia’s doctor to this day, nine years later. “We have a total partnership,” Virginia said.
MAKING ‘COMPLIANCE’ COMMONPLACE
Released from the hospital with a treatment plan, Virginia was instructed by her oncologist to make sure to take her medicine and have her blood drawn every three months. “At first, I didn’t understand exactly what the treatment was going to do or the side effects I could have. There’s only so much information you can absorb when you’re newly diagnosed,” Virginia said. “My oncologist didn’t want to expose me to information overload, so she said, ‘Let’s get you stabilized with this routine and see how it goes.’”
“I was on the drug for about four months, which got my numbers within the normal range,” Virginia added, “But the side effects were too great, so my doctor switched me to Tasigna® (nilotinib) capsules, which was a relatively new drug at the time.” Some patients were responding well to it, Virginia’s oncologist told her.
It was great to start taking Tasigna,” Virginia remembered feeling.
Virginia has been taking two doses of Tasigna, 12 hours apart, every day for about nine years. Each dose must also be taken two hours before a meal, and patients can’t eat for one hour after the dose. “I had never taken medicine on a strict routine. It was a big‐time shift for me, but my doctor and I made an agreement that I’d be compliant and take the medicine, and I have been,” Virginia explained. “Compliance is a strong word, but I like using it. You have to know you’ll be better off in the long run if you follow the treatment plan to a tee, so I do. I’m grateful that this medication actually exists and that helps me to go with it. Fasting is the hardest part,” Virginia continued.
After her “devastating diagnosis,” Virginia was introduced to a support group of CML survivors who “have walked this road many more years than I have,” she said. They gave her a wealth of good information, as well as strong emotional, practical and financial support. A national patient support group also assigned a volunteer first responder with CML to call Virginia soon after she was diagnosed.
Virginia hopes her own experience will help others who have been diagnosed with Ph+ CML, which is why she’s excited to be part of an important Tasigna campaign called Your Blood Demands to Be Heard. “When you take the medicine and have your blood tested on schedule, you’re doing the right thing,” she stressed. A nine‐year veteran of Ph+ CML, Virginia also offered four specific strategies on how she successfully incorporated her disease and its treatment into her life:
➠ TIME FOR TASIGNA: “The morning dose is very easy for me because you’re supposed to fast two hours before and an hour after. I take it when I wake up and then wait an hour to eat, and then that dosage is done. Then I take it at 9 pm, two hours after dinner. I just have to be more mindful when I go out to dinner and when I travel between the coasts and have to juggle time zones. I used to set reminders on my phone, but I don’t have to do that anymore.”
➠ SUPPORT IS SUPREME: “Find a good support group, even if you don’t feel great, and have a friend, a family member or a caretaker help you get to the doctor, get your blood drawn, take your medicine and take care of yourself, especially during those early days.”
“Support helped me to be compliant. It gave me a place from which to operate and feel safe. When I saw other people doing well, I’d think, ‘I can do that!’ We shared our blood numbers in the support group. The group provided encouragement and accountability. I figured out a way to work with my intimate circle and my support group that allowed me to let the medicine do what it’s supposed to do. I figured out what was going to get in the way of my success, and I deflated those fears and thoughts. There’s nothing like attitude, even if I’m bummed out and having a bad day. I had to get back up and show up again. I chose to do it.”
➠ WHERE THERE’S A WILL, THERE’S A WAY: “Besides my positive attitude, the secret to my success is my faith and undying spirit. I eat well. I have fun. I have perspective and a tremendous amount of hope. I got a second chance at life, so I try not to stress out too much. I surround myself with people whom I love and who love me.”
➠ NEVER DETERRED BY HER DISEASE: “My legs and large muscle groups would feel lethargic at the beginning, but I’ve been able to get back into a healthy workout routine. I don’t push myself as hard as I once did. I didn’t let my disease prevent me from dancing, playing golf and hiking. I also love to do barre exercise classes.”
Virginia has adjusted to her new normal. Her disease has been under control for a number of years, but she’ll likely be on Tasigna for the rest of her life and will have regular blood tests.
By the way, Virginia is the vice‐president of business development and sales at a startup in the cyber security business. That’s a demanding job, but she’s up to it. “I’ve made some adjustments because of my CML, but I love what I do, which is important to me,” she said.
Know your blood count, what the numbers mean, and get a treatment that can help.
TASIGNA® (nilotinib) capsules is a prescription medicine used to treat:
• Adults with newly diagnosed Philadelphia chromosome–positive (Ph+) chronic myeloid leukemia (CML) in chronic phase
• Adults with Ph+ CML in chronic phase and accelerated phase who no longer benefit from, or did not tolerate, other treatment, including GLEEVEC® (imatinib)
IMPORTANT SAFETY INFORMATION ABOUT TASIGNA® (nilotinib) Capsules
TASIGNA can cause serious side effects that can even lead to death. During treatment with TASIGNA your doctor will do tests to check for side effects. These tests will check your heart, blood cells (white blood cells, red blood cells, and platelets), electrolytes (potassium, magnesium), cholesterol, blood sugar, and pancreas and liver function. Your doctor may have you stop TASIGNA for some time or lower your dose if you have side effects. You should follow your doctor’s instructions. Serious side effects include:
• Low Blood Counts: Low blood counts are common with TASIGNA but can also be severe. Your doctor will check your blood counts regularly during treatment with TASIGNA. Call your doctor right away if you have symptoms of low blood counts including:
° Fever, chills, or other signs of infection
° Unexplained bleeding or bruising
° Shortness of breath
° Unexplained weakness
• Decreased Blood Flow to the Legs, Heart, or Brain: People who have recently been diagnosed with Ph+ CML and take TASIGNA may develop decreased blood flow to the legs, heart, or brain. Get medical help right away if you suddenly develop any of the following symptoms:
° Chest pain or discomfort
° Numbness or weakness
° Problems walking or speaking
° Leg pain or your leg feels cold
° Change in the skin color of your leg
• Pancreas Inflammation (Pancreatitis): Call your doctor if you have symptoms including sudden stomach area pain with nausea and vomiting
• Liver Problems: TASIGNA can increase your risk of liver problems. People who have had liver problems in the past may be at risk for getting liver problems with TASIGNA. Call your doctor, or get medical help right away if you develop any symptoms of liver problems including stomach area (abdominal) pain, yellow skin/eyes, and dark‐colored urine
• Tumor Lysis Syndrome (TLS): TLS is caused by a fast breakdown of cancer cells. Your doctor may do blood tests to check you for TLS. TLS can cause you to have kidney failure (with the need for dialysis treatment) and/or an abnormal heartbeat
• Bleeding Problems: Serious bleeding problems and death have happened during treatment with TASIGNA. Call your doctor right away if you develop signs and symptoms of bleeding such as uncontrolled bleeding, changes in eyesight, unconsciousness, sudden headache, or sudden confusion about your surroundings
• Total Gastrectomy: Tell your doctor if you have had a surgical procedure involving the removal of the entire stomach (total gastrectomy). Your doctor may need to change your dose
• Lactose: Tell your doctor if you have a severe problem with lactose (milk sugar) or other sugars. TASIGNA capsules contain lactose. Most people who have mild or moderate lactose intolerance can take TASIGNA
• Fluid Retention: Your body may hold too much fluid (fluid retention). Symptoms of fluid retention include shortness of breath, rapid weight gain, and swelling
• Abnormal Growth or Development in Children: Effects on growth and development have happened in children with chronic phase Ph+ CML during treatment with TASIGNA. Some children and adolescents who take TASIGNA may have slower than normal growth
• Pregnancy and Breastfeeding: TASIGNA should not be used during pregnancy since it may harm an unborn baby. If you become pregnant, think you may be pregnant, or are planning to become pregnant, tell your doctor right away. If you are able to become pregnant, your doctor should perform a pregnancy test before you start TASIGNA. Effective birth control should be used during treatment and for at least 14 days after your last TASIGNA dose. Do not breastfeed during treatment with TASIGNA and for at least 14 days after the final dose
• Treatment‐Free Remission in Adults: Your doctor will monitor your CML during treatment with TASIGNA to see if you are in remission. After at least 3 years of treatment with TASIGNA, your doctor may do certain tests to determine if you continue to be in remission. Based on your test results, your doctor will decide if you are eligible to try stopping treatment with TASIGNA. This is called treatment‐free remission (TFR)
° Your doctor will carefully monitor your CML during and after you stop taking TASIGNA. If your test results show your CML is no longer in remission, your doctor will restart TASIGNA treatment
° It is important that your doctor does frequent monitoring to find out if you need to restart your TASIGNA treatment. Follow your doctor’s instructions about restarting TASIGNA if you are no longer in TFR
• Drug Interactions: TASIGNA can interact with many medicines and supplements. This may increase your chances for serious and life‐threatening side effects. Tell your doctor about all the medicines you take including prescription and over‐the‐counter medicines, vitamins, and herbal supplements
If you need to take antacids (medicines to treat heartburn) do not take them at the same time that you take TASIGNA. If you take:
° A medicine to block the amount of acid produced in the stomach (H2 blocker): Take these medicines about 10 hours before you take TASIGNA or about 2 hours after you take TASIGNA
° An antacid that contains aluminum hydroxide, magnesium hydroxide,and simethicone to reduce the amount of acid in the stomach: Take these medicines about 2 hours before or about 2 hours after you take TASIGNA
• Common Side Effects in Adults and Children Include:
• Nausea • Diarrhea • Rash • Cough
• Headache • Constipation • Tiredness • Muscle and joint pain
• Itching • Vomiting • Fever • Night sweats
• Runny or stuffy nose, sneezing, sore throat
• Side Effects in Adults Attempting TFR: If you and your doctor decide that you can stop taking TASIGNA and try TFR, you may have more muscle and bone (musculoskeletal) symptoms than before you stopped treatment. Symptoms may include muscle pain, bone pain, arm and leg pain, spinal pain, and joint pain
Tell your doctor if you have any side effect that bothers you or does not go away. These are not all of the possible side effects of TASIGNA. For more information, ask your doctor or pharmacist.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1‐800‐FDA‐1088.
Please see the full Prescribing Information, including the Boxed WARNING, and the TASIGNA Medication Guide.
1. American Cancer Society. Chronic Myeloid Leukemia (CML), About Chronic Myeloid Leukemia. 22 February 2016. Available at: https://www.cancer.org/content/dam/CRC/PDF/Public/8684.00.pdf. Accessed November 2019
2. Tasigna [prescribing information]. East Hanover, NJ: Novartis Pharmaceuticals Corp; 2019