Download Understanding CLL and finding the right treatment for you

A Guide to
Empowering
Patients Living With
Chronic Lymphocytic
Leukemia (CLL)
Understanding CLL and
finding the right treatment for you
When you’re diagnosed with CLL,
life can feel like a blur
After a CLL diagnosis, you may be asking “Why me? Is there anything
I could have done to avoid getting CLL?” At this time, there isn’t an
answer since no one knows exactly what causes CLL.
You’re not alone
CLL is the most common type of adult leukemia
in North America and Europe1
• CLL affects ~4.5 per 100,000 adults in the US
each year1
• More than two-thirds of people diagnosed
with CLL are older than 601
• CLL is more common in men than in women1
What happens in CLL?
Although the cause of CLL is not known, we do know that B cells—a
type of white blood cell that’s an important part of your immune
system—become genetically damaged.2
In CLL, abnormal B cells grow out of control and crowd out healthy bone
marrow and blood cells. Abnormal B cells survive longer than healthy
cells and slowly build up in the body over time. When this happens,
you may develop anemia (low red blood cell count), an increased
tendency to bleed (lower platelet count),
and an increased risk of infections
(lower white blood cell count).2
Your doctor will make sure you have
blood tests to get a more detailed
picture of your condition. This will
help your doctor make a plan for your
treatment.
You may not feel any CLL
symptoms for years
It can come as even more of a shock that you have CLL because
you don’t feel anything
With the slow buildup of abnormal B cells, many people don’t have
any symptoms for at least a few years. Routine blood tests, such as a
complete blood count (CBC) or total protein level, may show anemia
or a high protein level before you notice any symptoms.2
What are the signs and symptoms of CLL?
As CLL starts to get worse, signs and symptoms may
appear that are caused by CLL. Talk to your doctor if you
have any of the following2,3:
• Weakness
• Feeling tired
• Weight loss
• Fever
• Night sweats
• Enlarged lymph nodes
• Pain or a sense of “fullness” in the belly
• Excess bruising, bleeding, frequent or severe nosebleeds,
and bleeding gums
3
The moment
your life changed
It’s normal to feel what you’re feeling
Like other major life-changing events, everyone handles a diagnosis
in their own way. Some common reactions and issues may include4,5:
• Fear, uncertainty, and anger
• Shock, disbelief, and sadness
•T
rouble listening to, understanding, or remembering what people
tell you during this time
•L
ooking more closely at your religious beliefs, personal and family
values, and what’s important in your life
You may have to rearrange and reprioritize some things in your life
as you start treatment. Some of these life changes might include6:
•A
dapting your daily routine as you go to
appointments and through treatment
•N
urturing relationships with others and knowing
how to talk to them about your diagnosis
•A
djusting your work life
If you don’t need to start
treatment right away, you may
be placed on “watch and wait”
You may feel uncomfortable not doing anything about a condition
as serious as CLL during the “watch and wait” period. It’s important
for you to talk to your doctor about any concerns you may have
regarding your treatment plan.
Early CLL treatment studies have shown7:
• Aggressive treatment in patients with early-stage disease
may not prolong survival
• There may be risks of early treatment, including potential
side effects and treatment complications
• Patients may build up a resistance to the drugs used and
would not be able to use them again when treatment for
later-stage CLL is needed
5
You have options for your
CLL treatment
When it’s time for treatment, it’s important to know the options
available to you. These include8:
• Chemotherapy: A type of drug (infusion or oral administration) that
enters the bloodstream to kill CLL cells throughout the body
• Oral medications: Agents that block the growth of cancer cells by
working against a specific part of that cell (eg, blocking an abnormal
protein)
• Radiation therapy: Given by a machine that uses high-energy rays
to kill CLL cells. It can be administered to the whole body or at a
specific part of the body where the cancer cells have been found
• Stem cell transplant: A procedure that is performed after radiation
therapy or chemotherapy that replaces cancer and blood stem cells
in the bone marrow with a transfusion of healthy blood stem cells
(either your own preharvested cells or donor cells)
• Supportive care: Care focused on relieving CLL-related symptoms,
such as infection prevention and treatment for low blood cell counts
Talk to your healthcare professional about which options may be
right for you.
FISH testing and finding your treatment
People with certain types of CLL do not respond well to some therapies,
such as chemotherapy. One of these CLL types is known as “del 17p
CLL.” Del 17p means that part of a chromosome (17) is missing. It’s
relatively rare at diagnosis, but more common in relapsed patients.2,9
So, for your doctor to choose a therapy that’s right for you, it’s
important that genetic testing be done before you start treatment.
A test to determine if you have del 17p CLL or other genetic
abnormalities is called FISH (fluorescent in situ hybridization).2
Take an active role in your care
When living with CLL, it’s important
to be an advocate for your own
care to get the support you need.
Here are some tips that can help you get the most out of your
doctor appointments:
• Before your appointments
- Research—Educating yourself helps you become the best
advocate for your care
- Keep a journal—Writing down how you’re feeling can help you
prepare for visits and remember important topics to discuss
- Bring a friend—This person can help you ask questions and
can take notes during your appointments
• During your appointments
- Try to ask the important questions first so you have time to
discuss your biggest concerns
- Tell your doctor how you feel, especially about any symptoms
- If you’re confused by anything your doctor says, ask the doctor
to explain it again
• After your appointments
- Add upcoming doctor appointments to your calendar
- Follow up with your healthcare team if you have any questions
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Be open and
honest with your
healthcare team
• Whenever your doctor prescribes treatment, tell the doctor if10:
- You’ve had this treatment before
- You’ve had an allergic reaction to this treatment
- You have or have had any other medical conditions
- You’ve recently been exposed to chickenpox or shingles
- You’ve ever been treated with radiation therapy or other
cancer therapies
- You take any vitamins, minerals, herbs, or other supplements
- You’re planning a family or have any concerns about intimacy,
birth control, fertility, pregnancy, or breastfeeding
- You take any other drugs (prescription or over-the-counter)
- You use illegal or street drugs, which can increase the toxicity
of certain cancer drugs
Get the most out of your visits
by asking questions
Sometimes it’s hard to remember what
to ask your doctor when you have the chance.
Here’s a list of questions that may help you
get more out of your doctor appointments:
Is my CLL serious enough to
treat right now?
How will I know if my CLL is getting worse?
What kind of treatment
may be right for me?
What kinds of side effects
should I expect?
What have been the experiences
of other people with CLL?
?
9
Surround yourself with support
• Become part of a community. Support groups
and online message boards can help you
connect with other people on the same path
• Lymphoma Support Network
(www.lymphoma.org) matches lymphoma
survivors and caregivers with volunteers who
have gone through similar experiences
• Invite friends and family to be part of your
team. To help you get the support you need,
make sure to tell them exactly how they can
help. You might ask a family member to:
- Be with you at doctor appointments
- Go grocery shopping for you or with you
- Do something fun with you to take your
mind off treatment
References: 1. National Cancer Institute. SEER stat fact sheets: chronic lymphocytic leukemia
(CLL). http://www.seer.cancer.gov/statfacts/html/clyl.html. Accessed August 28, 2015.
2. Leukemia & Lymphoma Society. Chronic lymphocytic leukemia. https://www.lls.org/content/
nationalcontent/resourcecenter/freeeducationmaterials/leukemia/pdf/cll.pdf. Revised 2014.
Accessed August 28, 2015. 3. American Cancer Society. Chronic lymphocytic leukemia.
http://www.cancer.org/acs/groups/cid/documents/webcontent/003111-pdf.pdf. Accessed
September 22, 2015. 4. American Cancer Society. The emotional impact of a cancer
diagnosis. http://www.cancer.org/treatment/treatmentsandsideeffects/emotionalsideeffects/
copingwithcancerineverydaylife/a-message-of-hope-emotional-impact-of-cancer. Revised
January 28, 2015. Accessed August 28, 2015. 5. American Cancer Society. Coping with cancer
in everyday life. http://www.cancer.org/treatment/treatmentsandsideeffects/emotionalsideeffects/
copingwithcancerineverydaylife/coping-with-cancer-in-everyday-life-toc. Accessed August 28,
2015. 6. National Institutes of Health. Coping with cancer. http://www.cancer.gov/about-cancer/
coping. Published December 2014. Accessed August 28, 2015. 7. Leukemia & Lymphoma
Society. Watch and wait. http://www.lls.org/leukemia/chronic-lymphocytic-leukemia/treatment/
watch-and-wait. Accessed August 28, 2015. 8. National Cancer Institute. What you need
to know about leukemia. NIH Publication No. 13-3775. http://www.cancer.gov/publications/
patient-education/leukemia.pdf. Revised September 2013. Accessed August 28, 2015.
9. Brown JR. The treatment of relapsed refractory chronic lymphocytic leukemia.
Hematology Am Soc Hematol Educ Program. 2011;2011:110-118. 10. Leukemia & Lymphoma
Society. Things to tell your doctor before treatment. http://www.lls.org/managing-your-cancer/
communicating-your-specialist/things-tell-your-doctor-treatment. Accessed August 28, 2015.
You have many people
on your side
From doctors, nurses, and pharmacists to friends, family, and support
groups, you have many people available to help. Don’t be afraid to
speak up and turn to them for support on your journey.
Information and inspiration right at your fingertips. The online
resources listed here are a good start for finding information about
advances in treatment options for CLL, support groups, resources,
and events in your area.
For more information on CLL
Living with Leukemia
www.living-with-cll.com
American Cancer Society
www.cancer.org
Leukemia & Lymphoma Society
www.lls.org
Lymphoma Research Foundation
www.lymphoma.org
For cancer support communities
The Advocacy Connector
www.advocacyconnector.com
CancerCare
www.cancercare.org
Cancer Support Community
wwww.cancersupportcommunity.com
National Comprehensive Cancer Network (NCCN)
www.nccn.org/patients
Patient Advocate Foundation
www.patientadvocate.org
11
Talk to your
healthcare professional
about which treatment options
may be right for you or visit
www.living-with-cll.com
© Pharmacyclics LLC 2015 © Janssen Biotech, Inc. 2015 09/15 PRC-01354