I Have Cancer, but Cancer Doesn’t Have Me
I find it strange how one moment can alter the course of one’s life. For me, that moment came the afternoon of December 27, 2015. I was on my way to work when I collided head-on with a van that turned right into me as I was driving. I was immediately rushed to the hospital, where I was treated for my injuries, including a concussion. Although I was released that night, the doctors told me I would need to have neck surgery to make a full recovery.
I went to see a neurosurgeon a few weeks later to get evaluated again before my surgery. He asked me if I was sick because my blood tests showed I had a high white blood cell count. I told my neurosurgeon I’d been feeling fine – other than the accident, of course – so he said that my lab results could just be due to a muscle injury, given how much I exercised. My doctor and I decided to give my body time to recover before having the surgery so my white blood cell count could go back to normal.
Not too long after that visit, I started experiencing excruciating neck pain, so my wife Reneé rushed me to the emergency room. After reviewing my bloodwork, one of the ER doctors came in and asked me if I’d been sick and I said, “No I haven’t – but why does everyone keep asking me that?”
I went back to my neurosurgeon and discussed my ER visit experience. He said I was still healthy enough to have the surgery but wanted me to talk to my primary care physician, who eventually led me to see an oncologist.
Coping with an Unexpected Diagnosis
At this point in my life, I didn’t even know what an oncologist was. I was only 50 years old and I’d never had any personal experience with cancer, so it really wasn’t on my radar. When my wife, Reneé, and I first met with my oncologist to get additional testing, we were both completely stunned when he said he was 95% sure I had leukemia. After another round of tests and a third visit, he confirmed that I had chronic lymphocytic leukemia (CLL), the most common form of leukemia in adults in the U.S. – although it typically affects people much older than me.
After receiving my diagnosis, Reneé and I picked our jaws up off the floor and went home. The first thing we did was pray. Our faith and our church community have always been an important part of our lives and they’ve been an especially crucial source of comfort and support for both of us as we’ve navigated the last several years.
Then, we made the active choice to push forward and not waste time worrying about what was already behind us, so we started learning everything we could about CLL. We asked the doctors lots of questions, we researched CLL online, and we talked to friends and family. Through our various research efforts, Reneé discovered that her sister-in-law knew someone who had CLL, so we were also able to get more information about the disease that way, which was helpful.
Treatment and Care
During my “watch and wait” period, which is the time of monitoring the disease through ongoing tests until the CLL has progressed to the point requiring treatment, I started to experience symptoms like swollen lymph nodes, body aches, night sweats and weight loss. When I told my oncologist, he recommended we begin chemotherapy, which I did. Unfortunately, it was not a great experience for me. I completed three weeks of treatment before I had to stop because I had such a bad reaction. My skin was itching so intensely that it was hard for me to focus on anything, and I could barely sleep at night. I finally saw an allergy specialist who was able to give me medications that helped, which allowed me to complete that first round of chemotherapy.
After that, I returned to the watch and wait period, but about seven months later my lymph nodes started swelling again and my white blood cell count went back up. I really didn’t want to go through another round of chemotherapy, and luckily, my doctor didn’t want me to either. Instead, he recommended IMBRUVICA® (ibrutinib), a once-a-day oral prescription medicine used to treat adults with CLL.
After discussing with my CLL specialist the benefits and potential side effects that may occur with IMBRUVICA® including serious side effects, such as bleeding problems (hemorrhage), infections, heart rhythm problems (ventricular arrhythmias, atrial fibrillation, and atrial flutter), heart failure, death, high blood pressure (hypertension), decrease in blood cell counts, secondary primary cancers, and tumor lysis syndrome (TLS) and the common side effects, including diarrhea, tiredness, muscle and bone pain, rash, bruising, and nausea. So far, IMBRUVICA® has been working well for me. I do experience some occasional side effects and symptoms, like headaches, loss of energy, nose bleeds, and continued night sweats, but IMBRUVICA® has been helping me manage the disease and I’m so grateful to have this as an option.
Reneé and I have also gotten helpful support through the By Your Side patient support program recommended to us by my doctor.* It helps people who are taking IMBRUVICA® and their caregivers throughout the treatment journey by providing educational resources and individualized support, which helped me start and stay on track with my prescribed treatment plan. Our By Your Side Ambassador† is so supportive and has done so much to help us research and understand the many different symptoms of CLL.
I also recently retired from my 35-year career in law enforcement, so I’ve been able to spend more time with Reneé, my kids, and grandkids while managing my CLL, which has truly been a blessing. Retiring has allowed me to refocus on my priorities and pursue hobbies I love, such as fishing and various home improvement projects. Since retiring I have been able to focus more on my home improvement projects, and right now I’m working on a “she-shed” for Reneé, which she is very excited about.
The last eight years haven’t always been easy, but at the end of the day, I feel extremely blessed that my cancer was detected at an early stage. If it hadn’t been for that car accident, I wouldn’t have discovered my CLL until much later and who knows what my life would look like today. I’m grateful for Reneé’s constant love, care, and support, and the time I get to spend with her and the rest of my family. At the end of the day, I try not to let my CLL define my life. I may have cancer, but it doesn’t have me.
Talk to your doctor about whether IMBRUVICA® is right for you and for more information on IMBRUVICA®, visit IMBRUVICA.com. Please see the Important Side Effect Information below and the full Important Product Information for more details.
Dion and Reneé were paid by Pharmacyclics, an AbbVie Company, and Janssen Biotech, Inc. for sharing their experience and Dion’s personal disease journey and treatment with IMBRUVICA®.
*IMBRUVICA® By Your Side patient support program is not intended to provide medical advice, replace prescribed treatment plans, or provide treatment or case management services. Patients are advised to always talk to their healthcare provider and treatment team about any medical decisions and concerns they may have.
†By Your Side Ambassadors are provided by Janssen Biotech, Inc. and Pharmacyclics LLC, an AbbVie Company, and do not provide medical advice or work under the direction of the prescribing healthcare professional (HCP). They are trained to direct patients to speak with their HCP about any treatment-related questions, including further referrals.
IMBRUVICA® is available as 70 mg and 140 mg capsules, 140 mg, 280 mg, and 420 mg tablets.
What is IMBRUVICA® (ibrutinib)?
IMBRUVICA® (ibrutinib) is a prescription medicine used to treat:
- Adults with chronic lymphocytic leukemia (CLL)/Small lymphocytic lymphoma (SLL).
- Adults with chronic lymphocytic leukemia (CLL)/Small lymphocytic lymphoma (SLL) with 17p deletion.
It is not known if IMBRUVICA® is safe and effective in children.
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 at about the same time each day.
IMBRUVICA® comes as capsules or tablets.
- If your healthcare provider prescribes IMBRUVICA® capsules or tablets:
- 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.
- 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®.
- 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 infection, an increased risk for heart disease, or have had heart rhythm problems in the past. Your heart function will be checked before and during treatment with IMBRUVICA®. 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 tests to check your heart 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.
- Decrease in blood cell counts. 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.
- 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 (CLL/SLL and WM) 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.
Please see the full Important Product Information.