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The human side of CLL: Jim’s story

By Jim Parker

Looking back, the telltale sign was the fatigue. I thought I was just getting older, that being more tired was part of being in my 70s. The tiredness crept up so slowly over time that it was barely even noticeable. That’s the scary part about my cancer story — when I found out about it, I had been living with it for around 6-7 years and hadn’t even known it was there.

My wife Becky and I have always been diligent about keeping up with physicals, hiking and staying active, and are generally proactive about our health. When I went to see a doctor for a routine physical, I was caught off guard by the question, “your spleen is enlarged, have you noticed?” No, I really hadn’t. “Anything else out of the ordinary?” I don’t think so.

That’s when he said it. “I’m concerned this could be cancer. Let’s get you to an oncologist.” And that’s when chronic lymphocytic leukemia (CLL) became part of my story.

At first, hearing the words “you have cancer” hit me like a ton of bricks. I hear “cancer” and I think “chemo,” with nasty side effects like nausea, vomiting, fatigue and gastrointestinal issues. What would that mean for our active lives? Would we still go hiking? Would road trips to see our grandkids even be possible anymore?

Later, I learned more than I wanted to about CLL. It is one of the most common types of adult leukemia.1,2,3 In the United States, more than 20,500 people are diagnosed with the disease each year.4 My doctor informed me that with CLL, cancerous cells crowd in bones and bone marrow, which leaves less room for healthy red and white blood cells. He explained this is problematic, as the main job of red blood cells is to carry oxygen throughout the body and deliver carbon dioxide to the lungs, while white bloods help to fight infections.5

It took me some time to process the diagnosis, but eventually I knew what I had to do. I spent decades working with manufacturing equipment, and this was no different. We had determined the source of the problem, now it was time to find and implement the solution.

This type of cancer is strange. My doctor even referred to it as “the good cancer,” which feels wrong because clearly no cancer is “good.” In fact, for some people, the symptoms of CLL can occur earlier and with more severity than I experienced, including night sweats, fever and infection.5 It can also make you more susceptible to immune system problems and other types of cancer. I suppose an upside is that people can live with CLL for a long time — in some cases without treatment — and it’s a type of cancer that has several treatment options, including traditional chemotherapy, targeted drug therapy, immunotherapy and bone marrow transplant.6

My doctor assured me that while there is no cure for CLL, with recent therapeutic advances, the disease can be treated and managed in a few different ways. Although some people can handle chemotherapy relatively well, and it can be highly effective, for me it was a relief that I didn’t need to try traditional chemotherapy as my first option, as I know it can be very hard on the body.

Instead, my doctor helped me enroll in a clinical trial for a new targeted therapy that was an oral option taken twice a day combined with obinutuzumab. And thanks to Becky, I’m also eating a healthier diet, working toward a goal of 10,000 steps a day, and she even helped me set medication reminders so I don’t miss a dose.

I consider myself lucky. The FDA-approved targeted therapy called CALQUENCE® (acalabrutinib) is working really well for me. Despite bruising a bit more easily than before, I haven’t really had any other bothersome side effects from the medication. [Individual results may vary. See Important Safety Information below.] Having the energy to keep up with my kids, grandkids, great grandkids, and my wife is everything to me.

Jim Parker lives in West Valley City, UT, with his wife Becky.

For more information about CLL, visit www.CALQUENCE.com.

 

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.

 

References
1 American Cancer Society. Cancer Facts & Figures 2019. Accessed November 2019.
2 Global Burden of Disease Cancer Collaboration. Global, Regional, and National Cancer Incidence, Mortality, Years of Life Lost, Years Lived With Disability, and Disability-Adjusted Life-Years for 29 Cancer Groups, 1990 to 2016. A Systematic Analysis for the Global Burden of Disease Study. JAMA Oncol. 2018;4(11):1553-1568.
3 Jain N, et al. Prevalence and Economic Burden of Chronic Lymphocytic Leukemia (CLL) in the Era of Oral Targeted Therapies. Blood. 2015;126(23):871.
4 Cancer.net. Leukemia – Chronic Lymphocytic – CLL: Statistics. Accessed November 2019.
5 Mayo Clinic. Chronic Lymphocytic Leukemia. Accessed November 2019.
6 Harvard Health Publishing. Chronic Lymphocytic Leukemia (CLL). Accessed November 2019.

 

CALQUENCE is a registered trademark of the AstraZeneca group of companies.
©2019 AstraZeneca. All rights reserved.

US-34982 Last Updated 12/19