Feeling Hopeful While Living with Chronic Lymphocytic Leukemia (CLL)
It was 2011, and I was preparing to retire. I went to my doctor for my routine bloodwork but a few days later when the doctor came back with my results, I learned I had chronic lymphocytic leukemia (CLL), the most common form of leukemia in adults.
I was shocked and in such disbelief that I didn’t even know what to say or ask. Along with not knowing what CLL was, the news came just 13 years after I had ovarian cancer. I thought, I’d beaten cancer once, would I be able to face this again?
Prior to my appointment, I was experiencing more fatigue and infections than normal, but I brushed it off, thinking maybe I wasn’t eating right or was just overexerting myself. At 75 years old, I assumed I was experiencing “the ordinary” at this phase of life.
I immediately began to research CLL by turning to a number of online resources, including CLL Society and Patient Power. What I heard from several sources was the importance of seeing a specialist, so I searched for the nearest cancer centers with CLL specialists.
I found one, and fortunately, I think a really good one! My husband was by my side at the appointment, and my CLL specialist was absolutely fabulous – he really took the time to walk us through what we needed to know and that we would meet every three months to track my disease. He explained that I had what is known as a deletion 17p mutation, a genetic change in CLL that can make the cancer harder to treat. While many patients will “watch and wait” for symptoms to progress or worsen, my disease would go different path and my doctor recommended that I go into treatment sooner than anticipated and that we should discuss my options so I would be ready when the time was right to begin treatment. I left the doctor’s office feeling empowered about my plan, even hopeful.
I decided to continue my research so I would be prepared for appointments with my doctor, to keep learning about my CLL. I really encourage other people with CLL to ask questions and find a support group, I think it’s important. Support groups are wonderful, it’s a chance to connect with other people who have been where you are and to hear new information.
A few years later, when it came time to make a decision regarding treatment, my doctor told me about different treatment options. We discussed a clinical trial related to CLL using a medicine called ibrutinib, then an investigational treatment option, and now known as IMBRUVICA® (ibrutinib). IMBRUVICA® works differently than chemotherapy by blocking Bruton’s tyrosine kinase (BTK) signaling. This helps stop B cells from surviving and multiplying and may slow the spread of CLL.
We talked about the potential benefits and side effects of IMBRUVICA®. My doctor told me that my lymphocyte count might go up in the beginning, but that it usually goes down as treatment continues. He also talked about some serious side effects that could occur while on treatment, such as bleeding, infections and heart problems, as well as some of the common side effects including diarrhea, nausea and decrease in certain blood cell counts, tiredness, muscle and bone pain, rash and bruising. Now I take IMBRUVICA® as a once-a-day pill with a glass of water before I have my morning coffee and breakfast. The side effects I experienced were joint pain, bruising and mouth sores and now the only side effect remaining are brittle nails. Each person’s experience with IMBRUVICA® could be different, and patients should speak with their doctor about potential or worsening side effects.
While CLL has always been on my mind, COVID-19 has added a layer of complexity when it comes to managing my disease. Since I’m older and my immune system is compromised, I feel nervous about leaving the house and have become somewhat anxious hearing all the concerning news. During these times of COVID-19, I’m especially appreciative that I don’t need to go into a treatment center to receive my medicine.
I find when I worry too much about something, I need to find something to take my mind off of it. So during the pandemic, I’ve started taking long walks three times a week and tending to my garden. I have done more than my share of cooking, which my husband loves, and even cleaned out closets to make donations. I continue to find joy in reading bedtime stories to my two grandsons – now over FaceTime – at least once a week.
Even before the pandemic, I learned other ways of coping to manage my disease and any worries I have. I turned to online CLL support groups to speak to and learn from others going through similar challenges. Today, I regularly reach out to others online, via phone call or Zoom – whatever it takes because it’s so important to lean on each other and to keep learning. The biggest thing for people living with CLL is knowing you’re not alone. You’re not on an island. Finding a support group can be a journey in itself, but that journey can start as simply as with a Google search. Your doctor may even be able to recommend people who can reach out to you, instead of you searching for them.
My other piece of advice is to ask questions. Lots of them. Ask your doctor, ask your support group. Knowledge is power! Knowledge is very empowering and can help you during a time when you feel like you have no control at all. Get up every day, build a great support system and – very importantly – keep doing what you love!
Important Side Effect Information
Before taking IMBRUVICA®, tell your healthcare provider about all of your medical conditions, including if you:
- have had recent surgery or plan to have surgery. Your healthcare provider may stop IMBRUVICA®for any planned medical, surgical, or dental procedure.
- have bleeding problems
- have or had heart rhythm problems, smoke, or have a medical condition that increases your risk of heart disease, such as high blood pressure, high cholesterol, or diabetes
- have an infection
- have liver problems
- are pregnant or plan to become pregnant. IMBRUVICA® can harm your unborn baby. If you are able to become pregnant, your healthcare provider will do a pregnancy test before starting treatment with IMBRUVICA®. Tell your healthcare provider if you are pregnant or think you may be pregnant during treatment with IMBRUVICA®.
- Females who are able to become pregnant should use effective birth control (contraception) during treatment with IMBRUVICA® and for 1 month after the last dose.
- Males with female partners who are able to become pregnant should use effective birth control, such as condoms, during treatment with IMBRUVICA® and for 1 month after the last dose.
- are breastfeeding or plan to breastfeed. Do not breastfeed during treatment with IMBRUVICA® and for 1 week after the last dose.
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Taking IMBRUVICA® with certain other medicines may affect how IMBRUVICA® works and can cause side effects.
How should I take IMBRUVICA®?
- Take IMBRUVICA® exactly as your healthcare provider tells you to take it.
- Take IMBRUVICA® 1 time a day.
- Swallow IMBRUVICA® capsules or tablets whole with a glass of water.
- Do not open, break or chew IMBRUVICA® capsules.
- Do not cut, crush or chew IMBRUVICA® tablets.
- Take IMBRUVICA® at about the same time each day.
- If you miss a dose of IMBRUVICA® take it as soon as you remember on the same day. Take your next dose of IMBRUVICA® at your regular time on the next day. Do not take extra doses of IMBRUVICA® to make up for a missed dose.
- If you take too much IMBRUVICA® call your healthcare provider or go to the nearest hospital emergency room right away.
What should I avoid while taking IMBRUVICA®?
- You should not drink grapefruit juice, eat grapefruit, or eat Seville oranges (often used in marmalades) during treatment with IMBRUVICA®. These products may increase the amount of IMBRUVICA® in your blood.
What are the possible side effects of IMBRUVICA®?
IMBRUVICA® may cause serious side effects, including:
- Bleeding problems (hemorrhage) are common during treatment with IMBRUVICA®, and can also be serious and may lead to death. Your risk of bleeding may increase if you are also taking a blood thinner medicine. Tell your healthcare provider if you have any signs of bleeding, including: blood in your stools or black stools (looks like tar), pink or brown urine, unexpected bleeding, or bleeding that is severe or that you cannot control, vomit blood or vomit looks like coffee grounds, cough up blood or blood clots, increased bruising, dizziness, weakness, confusion, change in your speech, or a headache that lasts a long time or severe headache.
- Infections can happen during treatment with IMBRUVICA®. These infections can be serious and may lead to death. Tell your healthcare provider right away if you have fever, chills, weakness, confusion, or other signs or symptoms of an infection during treatment with IMBRUVICA®.
- Decrease in blood cell count. Decreased blood counts (white blood cells, platelets, and red blood cells) are common with IMBRUVICA®, but can also be severe. Your healthcare provider should do monthly blood tests to check your blood counts.
- Heart problems. Serious heart rhythm problems (ventricular arrhythmias, atrial fibrillation, and atrial flutter), heart failure, and death have happened in people treated with IMBRUVICA®, especially in people who have an increased risk for heart disease, have an infection, or who have had heart rhythm problems in the past. Tell your healthcare provider if you get any symptoms of heart problems, such as feeling as if your heart is beating fast and irregular, lightheadedness, dizziness, shortness of breath, swelling of the feet, ankles, or legs, chest discomfort, or you faint. If you develop any of these symptoms, your healthcare provider may do a test to check your heart (ECG) and may change your IMBRUVICA® dose.
- High blood pressure (hypertension). New or worsening high blood pressure has happened in people treated with IMBRUVICA®. Your healthcare provider may start you on blood pressure medicine or change current medicines to treat your blood pressure.
- Second primary cancers. New cancers have happened during treatment with IMBRUVICA®, including cancers of the skin or other organs.
- Tumor lysis syndrome (TLS). TLS is caused by the fast breakdown of cancer cells. TLS can cause kidney failure and the need for dialysis treatment, abnormal heart rhythm, seizure, and sometimes death. Your healthcare provider may do blood tests to check you for TLS.
The most common side effects of IMBRUVICA® in adults with B-cell malignancies (MCL, CLL/SLL, WM and MZL) include:
The most common side effects of IMBRUVICA® in adults with cGVHD include:
Diarrhea is a common side effect in people who take IMBRUVICA®. Drink plenty of fluids during treatment with IMBRUVICA® to help reduce your risk of losing too much fluid (dehydration) due to diarrhea. Tell your healthcare provider if you have diarrhea that does not go away.
These are not all the possible side effects of IMBRUVICA®. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.
General information about the safe and effective use of IMBRUVICA®
Medicines are sometimes prescribed for purposes other than those listed in a Patient Information leaflet. Do not use IMBRUVICA® for a condition for which it was not prescribed. Do not give IMBRUVICA® to other people, even if they have the same symptoms that you have. It may harm them. You can ask your pharmacist or healthcare provider for information about IMBRUVICA® that is written for health professionals.
What is IMBRUVICA® (ibrutinib)?
IMBRUVICA® (ibrutinib) is a prescription medicine used to treat adults with:
- Chronic lymphocytic leukemia (CLL)/Small lymphocytic lymphoma (SLL)
- Chronic lymphocytic leukemia (CLL)/Small lymphocytic lymphoma (SLL) with 17p deletion
It is not known if IMBRUVICA® is safe and effective in children.
Please see the full Important Product Information.