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Caring for a patient, caring for yourself
CARING FOR A PATIENT
Multiple myeloma (MM) is a chronic disease that may come back
over time. This guide can help you take care of a patient with
returning MM by:
•• Understanding how MM changes over time and how this affects a patient
and you as the caregiver
•• Recognizing the importance of caregiving and how you can best care for someone
whose MM has come back
•• Learning how to take care of yourself while taking care of someone else
A guide to supporting patients with returning multiple myeloma
© 2013 Celgene Corporation 07/13 US-POM130024c
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John Andrew Holmes, Jr
CARING FOR YOURSELF
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“There is no exercise better for the heart than
reaching down and lifting people up.”
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Are you a caregiver?
Many people who help someone during an illness never think of themselves
as caregivers. A caregiver is anyone who provides emotional and/or physical support
for someone with returning multiple myeloma (MM). A caregiver can be a spouse,
partner, family member, neighbor, or friend.
Why is caregiving for someone
with MM important?
MM is a chronic disease. It is a cancer of immune cells, called plasma cells, in the
blood. This disease may change over time. As MM changes, so can the needs of the
patient. If you’ve already been a caregiver for someone with MM, you may notice that
your role evolves as the disease changes. Or if this is your first time taking care of
someone with MM, you may be unsure of what is involved at this point.
This brochure can give you advice and information about
caregiving, such as:
Being a caregiver
•• Find out how you can best care for someone
whose MM has come back
Taking care of yourself
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•• Recognize the importance of caregiving
•• Learn how to take care of yourself while
taking care of someone else
•• Identify when and how to get support
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•• Discover how progressing MM affects the
patient and you as the caregiver
•• Learn more about options for MM that
has come back over time
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Rosalynn Carter, Former First Lady of the United States
•• Learn about how MM changes over time
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“There are only four kinds of people in this world: those
who have been caregivers, those who currently are
caregivers, those who will be caregivers and those who will
need caregivers. Caregiving is universal.”
Understanding MM
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Understanding MM
and why it comes back
“It is one of the most beautiful compensations of life,
that no man can sincerely try to help another without
helping himself.”
Ralph Waldo Emerson
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Understanding MM is an important part
of being a caregiver
What is MM?
Why does MM keep coming back?
Multiple myeloma is a chronic cancer of immune cells, called plasma cells, in the blood.
Plasma cells normally make antibodies that fight infection, but in multiple myeloma
they turn into cancer cells. These cancer cells are called myeloma cells.
Changes to the plasma cells occur in the bone marrow, where all cells in the blood are
made. The blood cells made in the bone marrow include platelets, which help in blood
clotting, red blood cells, which transport oxygen throughout the body, and white blood
cells, which are responsible for immune defense. In multiple myeloma, normal plasma
cells and other blood cells are taken over and crowded out by myeloma cells.
Myeloma cells make a type of abnormal antibody called the M protein. Your doctor
looks at your M protein levels to see if treatment is affecting your disease.
When someone is treated for MM, he or she may feel better for a while. But symptoms
eventually come back. The medicines he or she was on before may not have worked
or may no longer be working. This means that the disease is not responding and your
doctor may need to change your treatment. This is part of the cycle of MM.
The cycle of MM
The doctor may
start treatment
again with the
same medicine or
a new medicine
after a relapse
Treatment
White blood cell
Myeloma cell
Platelet
Plasma cell
RELAPSE
RESPONSE
After a period of response,
MM cells may change. This may
cause symptoms to return,
which is called a relapse
Red blood cell
Healthy bone marrow
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Unhealthy bone marrow
in multiple myeloma
It is common for someone with MM to go through several of these cycles. The time
between receiving medicine, response, and relapse and the number of cycles can vary
between patients. It’s important that patients stay on their MM medicine for
as long as the doctor recommends.
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How multiple myeloma occurs
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Medicine may
help improve signs
and symptoms
due to a decrease
in myeloma cells.
This is called
a response
(or remission)
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How MM can impact a patient
MM can affect the entire body
As just described, MM is a chronic disease that changes over time. Even though MM
is a cancer of the blood, it can cause medical problems throughout the entire body.
Patients may be at a greater risk for these problems each time their MM comes back.
That’s why a patient may feel new or different symptoms throughout the journey.
Make sure that your loved one is comfortable talking with you about how he or she is
feeling. Write down any changes in his or her health that you want to share with the
doctor and nurse at the next visit.
Keep track of all the medicine your loved one is taking, as these may also cause changes
to his or her health.
Common issues
Cause
Symptoms
Breakdown of bone
Kidney disease
(renal failure)
Too much calcium and/or M protein
in the blood
••Frequent urination
••Swelling
••Fatigue
••Confusion
Anemia
Low number of red blood cells
••Fatigue
••Weakness
Bone damage
Myeloma cells crowd out normal
bone cells
••Fractures
••Bone pain
Reduced immune
function
Myeloma cells block the production
of normal antibodies, which fight
infection
••Frequent infections
••Delayed recovery from
Peripheral neuropathy
Certain MM medications, too much
M protein
••Tingling sensation in the
infections
feet and hands
If a patient experiences any of the above symptoms, contact his or her healthcare team.
It is important to encourage your loved one to eat and drink right, rest, and reduce
physical activity. To reduce the risk of infection, the patient should limit contact with
sick people and maintain personal hygiene.
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High calcium levels
(hypercalcemia)
••Dehydration
••Constipation
••Fatigue
••Confusion
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It is important to be open and honest about any changes your
loved one is going through, so the healthcare team can provide
the best care and medicine for MM.
To help your friend or family member with MM it is important to understand how
the disease can impact them physically. Below are the most common medical issues
associated with MM and the medicines for it.
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Talk with the patient’s healthcare team about the options available at each stage in
the journey. That way you can stay informed and educated about a patient’s care and
become an active participant in making decisions.
Signs and symptoms associated with MM
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The importance of being a
caregiver for someone whose
MM has come back
“The unselfish effort to bring cheer to
others will be the beginning of a happier
life for ourselves.”
Helen Keller
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What you can do as a caregiver
Caregiving is even more important each time MM
comes back
If you’ve already been supporting someone during his or her journey with MM, you
might be familiar with all of the tasks that need to be done. But each time MM returns,
patients may need additional help or different kinds of help. If you’re new to being a
caregiver, it’s important to know that these patients may need different care than earlier
in their disease.
The following pages offer advice on how to help take care of
someone whose MM has come back, such as:
A caregiver can take on many roles
A caregiver plays many roles in the journey of someone with MM. And that role can
change from one day to the next. At times you might feel like a chauffeur, nurse,
cheering section, administrative assistant, or counselor. There might be several people
to fill these different roles or you may be the only one.
Each time MM comes back, patients may be less able and have less energy to go about
their daily life. Helping them with everyday tasks becomes even more important.
Some activities that you may be able to help a patient with:
•• Driving to doctor visits and errands like grocery shopping
•• Helping with personal care, such as dressing, bathing, and feeding
•• Staying organized
•• Assisting with at-home tasks, such as preparing meals, cleaning, and doing
yard work
•• Working with the healthcare team
•• Understanding insurance coverage and paying medical expenses
•• Performing medical care at home like giving medications and watching for
side effects
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•• Providing emotional support
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•• Managing schedules and appointments
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•• Helping with daily activities
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Providing emotional support
Staying organized
Caregiving is more than helping with tasks
Organizing can help you keep track of all you need to do
Finding out that MM has come back again may be particularly stressful for patients.
And they might not know how to talk about it. It may be hard to know exactly what kind
of emotional support another person needs. Staying positive, having patience, and
keeping an open mind can help.
Balancing doctor appointments, dosing schedules, and household responsibilities can
feel like a full time job. Sometimes planning ahead can make things easier. Writing
detailed notes and reminders in a notebook, planner, or calendar can help you keep
track of all you need to do. It’s helpful for the caregiver to attend all medical visits.
If you are able to do so, make the most of your time with the doctor or nurse by
coming prepared.
Other tips for providing emotional support:
•• Be practical about what your loved one can deal with
•• Be understanding when he or she is no longer able do something
•• Provide encouragement and be there to listen
•• List of allergies
•• Notes on how the patient is feeling or changes in how he/she feels
•• Schedules of other appointments
•• List of other medicines, dosing schedule, and side effects
•• List of questions
Most important, help your friend or family member with MM
stay positive as he or she starts a new medicine.
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If you and the patient are going to a new doctor or hospital, you should also bring
previous records, test results, and a list of other medicines. Each doctor or nurse
the patient sees should be told that he or she has MM, as this may have an impact
on other medical decisions.
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•• Help locate a local patient support group
•• Insurance information and any financial issues
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•• Let him or her set the tone and topic of conversation when talking about MM
•• Contact information for all physicians, specialists, and therapists
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•• Make sure your loved one knows how important he or she is to you
Things you should bring include:
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Working with the healthcare team
Important questions for the healthcare team
Effective communication is important
Speaking up for someone with MM
Medical visits are a regular part of life for someone with MM, especially when
it comes back. A patient’s healthcare team can involve many different people—doctor,
nurse, physician assistant, nurse practitioner, social workers, and a number of others.
At times, patients with MM may be too overwhelmed to pay attention or grasp
what the doctor is telling them. That’s where you can step in, by going to doctor visits,
asking questions, and being his or her advocate.
It’s important to work together with a patient’s healthcare team so they can understand
what he or she is experiencing. A nurse is a great source of information and may be the
person you have the closest relationship with at the doctor’s office.
If you are unsure about something the doctor or nurse is saying, don’t be afraid to ask
for more information or to have them explain it again. Make sure that you understand
everything before you leave the office. You may want to bring a recording device to
visits to replay conversations later or bring a notebook to take notes.
Some questions you may want to ask about the practice are:
•• When is the office open?
•• A change in the patient’s health
•• Possible side effects
•• A concern about a new symptom
•• The results of lab tests
Write down additional questions you may have:
The healthcare team is the first line in the fight against multiple myeloma.
And you are an important member of the team, so make sure your input
is heard. Communicate openly with the entire healthcare team. Being
organized can help this conversation.
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•• Who can you go to for questions when the doctor is not around?
•• A new medication or changing medication
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•• When and how is the best time to contact the office (phone, fax, or email)?
•• The patient’s diagnosis
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•• Who do you contact after office hours or if there is an emergency?
If you have any specific questions for the healthcare team, you should write them down
before each visit. It may be helpful to prioritize them ahead of time. Some topics you
might want to discuss openly with a doctor or nurse are:
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Being a good caregiver
means taking care of yourself
“Strength means recognizing that it is
impossible to be strong all the time.”
Sally Franser
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Make time to focus on yourself
Being an effective caregiver means taking care of yourself
Caregivers may be so focused on caring for someone else that they sometimes forget
about their own needs. This is not good for you or the person you are caring for.
“While we may not be able to control all that happens to us,
we can control what happens inside us.”
Benjamin Franklin
Taking care of yourself first helps you take better care of someone else. Staying healthy
and positive will help you carry out your caregiving tasks.
Ways that you can take care of yourself
Allow time for yourself
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•• Monitor your own health, particularly if you have your
own medical issues
•• Be sure to visit your doctor for routine check-ups
•• Watch for stress-related symptoms, such as depression,
headaches, upset stomach, difficulty sleeping, irritability,
or lack of focus
•• Maintain a balanced diet, exercise regularly, and get 8
hours of sleep a night
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•• Keep a planner or a calendar to make a list of tasks
that you need to do each day
Stay healthy
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Balance your schedule with that
of the patient
•• Try not to feel guilty if you become overwhelmed,
because feeling scared, sad, or lonely is normal
•• Be open and honest with others about your emotions
•• Join a caregiver support group or talk with a professional counselor
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•• Take breaks to walk outside, watch television, read, or take
part in a hobby
•• Make time to relax and clear your mind so you can re-energize
yourself to care for your friend or family member with MM
Express yourself
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Reach out to others for help
Asking others to help can benefit you and your loved one
You may be the only caregiver in a patient’s life or there may be others. If you are the
primary caregiver, you may feel like you are handling everything yourself. When MM
comes back, there may be more to do than you can handle on your own.
How to get the most out of additional help
There are specific things that others can do to help with caregiving. It is useful
to know the skills and availability of others before charging them with specific tasks.
Here are tips to help you share caregiving activities:
Some specific tasks that others can help you with are:
•• Be honest with yourself about what you can do and learn how to pass
on responsibilities
• Chores like cooking, cleaning, shopping, yard work, and childcare
•• Make a plan with friends and family of what needs to get done now or later
•• Driving to doctor visits and running errands
•• Researching information about MM
•• Reaching out to others to give them updates on your friend or family member’s
well-being
•• Let go of tasks that aren’t important at the time, because you can always
pick them up again
Remember, not everyone will be able to help you. But, let
them know how much you appreciate it when they can.
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•• Let people know what they can do as they might not know what’s involved
in caregiving
•• Talking with you and listening to your feelings
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•• If someone does offer to help, be willing to accept it no matter how much or how
little the offer is
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It’s important to know that you are not alone in this journey. Sometimes others may
want to help but may not know how to offer. Don’t be afraid to reach out if they don’t.
Asking for extra support may be the best thing for your loved one.
When you are asking people for help, first ask them if they would like to share in some
caregiving tasks. It is also good to specifically discuss the areas where they could assist
you. Then clearly explain the tasks needed and what would be most helpful for you
and the patient.
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You are not alone
Organizations for caregivers
As a caregiver, you are not alone in taking care of someone with a chronic illness.
Did you know that almost 66 million adults in the United States provide unpaid care
and support to other people?
Often, caregivers need support of their own when helping someone with MM
that has returned.
Patient advocacy groups
Patient advocacy groups can provide support and education to people with MM
and their caregivers.
Patient advocacy groups include:
• American Cancer Society (ACS)
There are several websites and groups that offer support and
guidance for caregivers:
• National Alliance for Caregiving
www.caregiving.org
www.wellspouse.org
There are also other resources that provide additional services
for people with chronic illnesses:
•A
ir Care Alliance
www.aircareall.org
• Disability.gov
www.disability.gov
• International Myeloma Foundation (IMF)
www.myeloma.org
1-800-452-CURE (1-800-452-2873)
• Leukemia & Lymphoma Society (LLS)
www.lls.org
1-800-955-4572
• M
ultiple Myeloma Research Foundation (MMRF)
www.themmrf.org
1-203-229-0464
•M
yeloma Beacon
www.myelomabeacon.com
• Meals On Wheels Association of America
www.mowaa.org
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• Well Spouse Association
www.cancercare.org
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www.nfcacares.org
•C
ancer Care
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• National Family Caregivers Association
www.cancer.org
1-800-ACS-2345 (1-800-227-2345)
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Notes
Notes
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Caring for a patient, caring for yourself
CARING FOR A PATIENT
Multiple myeloma (MM) is a chronic disease that may come back
over time. This guide can help you take care of a patient with
returning MM by:
•• Understanding how MM changes over time and how this affects a patient
and you as the caregiver
•• Recognizing the importance of caregiving and how you can best care for someone
whose MM has come back
•• Learning how to take care of yourself while taking care of someone else
A guide to supporting patients with returning multiple myeloma
© 2013 Celgene Corporation 07/13 US-POM130024c
POMA3D0197_C_PatientStarterKit_CaregiverBrochure_r5.indd 1-1
8/26/13 3:48 PM
B:9.25”
John Andrew Holmes, Jr
CARING FOR YOURSELF
T:9”
S:8.5”
“There is no exercise better for the heart than
reaching down and lifting people up.”