AVO:
Any cancer diagnosis is shocking but when it’s something you’ve never heard of and can’t even visualize what that means and how your life is going to change, it’s extra shocking.
My name is Doreen. I was diagnosed with small lymphocytic lymphoma in 2015, and it progressed to CLL, chronic lymphocytic leukemia in 2016.
In the decades before my diagnosis, I was the kind of burn the candle at both ends person. I worked a full-time job, and then at night I would do theater. And on the weekends, I would do the performances. And I would shoot films, student films and things in between. So, I really had an active busy life.
Right before my diagnosis, I had a lot of fatigue. And I thought, you know, you burn the candle at both ends. You have a very busy life, and you’re getting older. So, I wrote it off as just aging and my busy schedule.
That was the first sign that something was amiss. And then I had some pain, and I went into physical therapy for that pain, and the physical therapy didn’t really help.
So, we did some imaging, and we found enlarged lymph nodes throughout my body, and the imaging led to an axillary biopsy, and the biopsy showed small lymphocytic lymphoma, SLL. And when the doctor said, “Blah, blah, blah, lymphoma, blah, blah, blah, leukemia.” I did not understand how it could be both. And I had never head of CLL/SLL before, so I was devastated.
The next day, I was in the oncologist’s office, for further explanation and they asked me if I had any questions, and I didn’t even know what to ask.
Your first thought when you have cancer is, “I want it out of me.” So, I didn’t understand watch and wait. And I think that’s really a challenging part of this diagnosis and treatment journey for most people.
After my initial diagnosis, where I knew nothing about CLL or SLL, I started doing my own research. I found support groups that helped educate me on terminology and we talked about clinical trials and treatments that were in the pipeline. One of the new treatments was called, at the time, ACP196 and it was available in a clinical trial only. That eventually became CALQUENCE.
My oncologist explained to me that treatment with CALQUENCE was a targeted therapy…
…and that made me much more comfortable to have a less broad treatment. Something that was more specific and targeted, that gave me a bit more confidence and when I was told that I did qualify and there was an open space for me in that trial, I was thrilled.
My experience with CALQUENCE have been great. I really have had an easy time incorporating CALQUENCE into my daily life. I set reminders on my phone, and I just incorporate it into the other supplements and medications I need to take for the day.
My doctor and I are very happy with my progress on CALQUENCE. I’m in remission, almost five years in, with manageable side effects. I feel very confident to have my frontline treatment as CALQUENCE. It’s given me control over my CLL/SLL and I get on with the other things in my life.
When I was diagnosed with CLL/SLL, it was a shock and I had gone through that steep learning curve, and I decided that I wanted to pay it forward. I thought, if I could help others with advocacy, then that was what I wanted to do. So, I’ve channeled some of my energies into advocating, not only for myself, but for others who are newly diagnosed or contemplating treatment to try to help them understand what’s happening and to calm some of their fears and anxieties.
In my experience, educating yourself and aligning yourself with a CLL specialist are the two most important things when you receive a CLL/SLL diagnosis.
I think you become your own best advocate when you understand the disease, how it will likely unfold for your and what treatment would be best for you.
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Important Safety Information About CALQUENCE® (acalabrutinib)
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.
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 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 2 weeks after your last 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.
- Shallow CALQUENCE tablets whole with a glass of water. Do not chew, crush, dissolve, or cut tablets.
- 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 (cardiac arrhythmias) have happened in people treated with CALQUENCE, which may be serious or lead to death. 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.
- Liver problems. Liver problems can happen during treatment with CALQUENCE, which may be severe or life-threatening, or lead to death. Contact your healthcare provider if you experience stomach pain or discomfort, urine of dark color or yellowing of your skin. Your healthcare provider will request tests to monitor your liver function during treatment with CALQUENCE.
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.