How I Took an Active Role in My Blood Cancer Treatment
When my cancer treatment prevented me from continuing to do the activities I enjoyed, I knew I had to talk to my doctor about other options.
I have always enjoyed physical activities — mountain biking on the trails near my house in Arizona, hiking, swimming, and exercising. My wife, kids, grandkids, and my job keep me busy too. When my cancer treatment prevented me from continuing to do the activities I enjoyed, I knew I had to talk to my doctor about other options.
In October of 2020, I visited my primary care physician for what I thought was just a checkup for aches and pains. My doctor ordered routine blood work and, the next day, I was notified that my white blood cell count was high. Within a few weeks, I was diagnosed with chronic lymphocytic leukemia (CLL), the most common type of leukemia in adults.
The diagnosis came as a shock to me and my family, especially considering my previous good health and active lifestyle. I felt like my life was changed overnight. My wife, Jane, who is a breast cancer survivor, said my diagnosis felt like a “gut punch.”
My doctor said my white blood cell count was rising quickly, so she ordered additional tests to rule out other conditions and determine if the cancer had spread to other parts of my body. I continued to work full time, but I was experiencing extreme pain and fatigue. Sometimes I struggled to walk from my bed to the bathroom, which was hard for Jane to see, and the pain made it impossible for me to bike. I felt disappointed and frustrated watching the new mountain bike trails being built that winter, and Jane struggled with feelings of helplessness as she saw my pain.
Since my diagnosis, Jane has done everything she can to support me — helping me find a doctor I’m comfortable with, reminding me to take my medication, and being a wonderful listener. Together we have tackled my cancer one day at a time, and I am so grateful to her.
About two months after my diagnosis, I started my first treatment for CLL, which was an oral targeted therapy. My doctor told me it could get worse before it got better, and almost immediately, I experienced debilitating side effects. I continued to struggle with fatigue and had severe pain in my joints. My feet constantly hurt and would get swollen and numb. I was determined not to let my cancer and treatment prevent me from doing the things I love to do. I tried to continue mountain biking, but it was challenging because it would take two weeks for my body to recover when I rode.
I told my doctor about the side effects I was dealing with and the impact they had on my daily life. She prescribed a medication to help alleviate my pain. Even though some of the side effects I was experiencing subsided and I regained some energy, I knew I wanted something different.
I consulted a family member who is a hematologist and was very familiar with my diagnosis. He mentioned another oral targeted therapy, CALQUENCE® (acalabrutinib), could be an option for me. I was concerned that I could experience the same or new side effects, but my desire to get back to doing the things I loved, like biking and hiking, outweighed my hesitation. I decided it was time to speak with my doctor about what I wanted out of my CLL treatment. So I did.
My doctor understood my concerns and how important a tolerable treatment option was to me. After a few conversations, I started taking CALQUENCE.
At first, I experienced some side effects, such as scabs on my arms and occasional pain and canker sores on my tongue. The side effects have decreased over time, though, and I am feeling the best I have since my diagnosis. [Individual results may vary. See Important Safety Information below.] With more energy and fewer side effects, I have been able to get back to biking regularly, which I am thrilled about. I have even planned a 38-mile, four-day hike in the Grand Canyon this year.
For many CLL patients like me, treatment tolerability is just as important as efficacy. I wanted to keep my cancer and symptoms under control but, personally, I wasn’t willing to compromise on enjoying life — staying active, spending time with my family, working, and being outdoors. I am glad that I talked to my doctor about exploring new treatment options for CLL, and I am thankful for an option like CALQUENCE.
Throughout my CLL journey I’ve kept a log of the symptoms and side effects I’ve experienced, and I’ve found that diary to be helpful in conversations with my doctor. It is important to talk to your doctor or another member of your care team about the physical and emotional side effects that you are experiencing. I encourage others diagnosed with CLL or other types of cancer to advocate for yourselves — talk with your loved ones and your healthcare provider about what’s important to you while discussing which treatment option(s) might be right.
Cliff lives in Mesa, Arizona with his wife, Jane.
For more information about CLL, visit https://www.calquence.com/cll.html.
What is CALQUENCE?
CALQUENCE is a prescription medicine used to treat adults with chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL).
It is not known if CALQUENCE is safe and effective in children.
Important Safety Information About CALQUENCE® (acalabrutinib) capsules
Before taking CALQUENCE, 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 CALQUENCE for any planned medical, surgical, or dental procedure.
- have bleeding problems.
- have or had heart rhythm problems.
- have an infection.
- have or had liver problems, including hepatitis B virus (HBV) infection.
- are pregnant or plan to become pregnant. CALQUENCE may harm your unborn baby and cause problems during childbirth (dystocia).
- If you are able to become pregnant, your healthcare provider may do a pregnancy test before you start treatment with CALQUENCE
- Females who are able to become pregnant should use effective birth control (contraception) during treatment with CALQUENCE and for at least 1 week after the last dose of CALQUENCE
- are breastfeeding or plan to breastfeed. It is not known if CALQUENCE passes into your breast milk. Do not breastfeed during treatment with CALQUENCE and for at least 2 weeks after your final dose of CALQUENCE.
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Taking CALQUENCE with certain other medications may affect how CALQUENCE works and can cause side effects. Especially tell your healthcare provider if you take a blood thinner medicine.
How should I take CALQUENCE?
- Take CALQUENCE exactly as your healthcare provider tells you to take it.
- Do not change your dose or stop taking CALQUENCE unless your healthcare provider tells you to.
- Your healthcare provider may tell you to decrease your dose, temporarily stop, or completely stop taking CALQUENCE if you develop certain side effects.
- Take CALQUENCE 2 times a day (about 12 hours apart).
- Take CALQUENCE with or without food.
- Swallow CALQUENCE capsules whole with a glass of water. Do not open, break, or chew capsules.
- If you need to take an antacid medicine, take it either 2 hours before or 2 hours after you take CALQUENCE.
- If you need to take certain other medicines called acid reducers (H2-receptor blockers), take CALQUENCE 2 hours before the acid reducer medicine.
- If you miss a dose of CALQUENCE, take it as soon as you remember. If it is more than 3 hours past your usual dosing time, skip the missed dose and take your next dose of CALQUENCE at your regularly scheduled time. Do not take an extra dose to make up for a missed dose.
What are the possible side effects of CALQUENCE?
CALQUENCE may cause serious side effects, including:
- Serious infections can happen during treatment with CALQUENCE and may lead to death. Your healthcare provider may prescribe certain medicines if you have an increased risk of getting infections. Tell your healthcare provider right away if you have any signs or symptoms of an infection, including fever, chills, or flu-like symptoms.
- Bleeding problems (hemorrhage) can happen during treatment with CALQUENCE and can 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 or symptoms 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 you cannot control, vomit blood or vomit that looks like coffee grounds, cough up blood or blood clots, dizziness, weakness, confusion, changes in your speech, headache that lasts a long time, or bruising or red or purple skin marks.
- Decrease in blood cell counts. Decreased blood counts (white blood cells, platelets, and red blood cells) are common with CALQUENCE, but can also be severe. Your healthcare provider should do blood tests to check your blood counts regularly during treatment with CALQUENCE.
- Second primary cancers. New cancers have happened in people during treatment with CALQUENCE, including cancers of the skin or other organs. Your healthcare provider will check you for skin cancers during treatment with CALQUENCE. Use sun protection when you are outside in sunlight.
- Heart rhythm problems (atrial fibrillation and atrial flutter) have happened in people treated with CALQUENCE. Tell your healthcare provider if you have any of the following signs or symptoms: fast or irregular heartbeat, dizziness, feeling faint, chest discomfort, or shortness of breath.
The most common side effects of CALQUENCE include headache, diarrhea, muscle and joint pain, upper respiratory tract infection, and bruising.
These are not all the possible side effects of CALQUENCE. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.
Please see full Prescribing Information, including Patient Information.
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