Care Partner Support
Information for care partners
Who is a care partner?
Some care partners are family members, friends, or simply others who provide you with needed support. Giving care might mean being there to help with day-to-day activities, such as going with you to medical visits or preparing meals. A care partner can also provide emotional support by talking, listening, and working through challenges together with the patient.
Changing roles, changing feelings
A care partner is often an active part of someone's life before cancer. But living with cancer can change the roles that one's used to. A care partner may have to take on new responsibilities. Stress and confusion are normal at this time. Seeking help from a counselor or psychologist can help.
Dealing with ups and downs
Many care partners say they have a range of strong emotions that seem to come and go during the cancer journey. The hopeful highs and the depressing lows can feel like being on a roller coaster. Sadness, fear, hope, anger, hopelessness, worry, grief — all these feelings are normal and are felt by many care partners. Your care partner may want to reach out to one of these organizations for care partners:
- Family Caregiver Alliance (FCA)
1 (800) 445-8106 - National Family Caregiver Association (NFCA)
1 (800) 896-3650
Genentech and Astellas are not affiliated with and do not endorse any of the listed organizations. The information provided by Genentech and Astellas is for informational purposes only and is not meant to replace a healthcare provider's (HCP) advice.
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The patient you are caring for may feel a loss of control over his or her life because of pancreatic cancer. For this reason, asking for help may not be easy. So take the first step. Offer your help. Below are just a few things you can do to care for the patient. For additional suggestions on what you can do, visit the websites of the organizations listed in our Support Resources section.
Offer to go along to doctor visits
To get the most from doctor visits, prepare ahead. Start by paying attention to changes that may be happening to the patient. He or she may not even be aware of many of these changes.
Write down any changes in the patient's physical and emotional well-being. Bring this list with you to the doctor. Note such things as whether the patient has:
- Difficulty sleeping
- Lost weight
- Changes in bowel movements (constipation, diarrhea)
- Developed a rash or other skin irritations
- Shown signs of depression, such as no longer enjoying the same activities he or she did before the advanced pancreatic cancer
Make a list of questions or concerns to discuss with the doctor.
A list helps you remember important issues. It can also help you keep your questions to the point. (If you have many concerns you wish to discuss with the doctor, make a separate appointment so that the doctor can spend more time discussing them with you and the patient.) Remember to bring the list with you to the next doctor's appointment.
- What is the best time of day to take Tarceva (erlotinib)?
- If the patient develops a rash, what can be done to manage it?
- If the patient has diarrhea, what over-the-counter medications can be used to manage it?
- What side effects may occur with Tarceva?
- Where can I find information on in-home care partners?
- Who can answer questions if you are not available?
Keep track of all medications
Other medications and supplements — including vitamins and herbal products — may affect how well Tarceva works. For this reason, it's important to tell the doctor what other medications and supplements the patient is taking. The chart below is an example of one that can help you do just that. Make a chart and fill it in with all the medications the patient is taking. Or, you can print this page and use this example as a place to start. (In the example, Tarceva information is filled in already.) Remember to include over-the-counter vitamins and herbal products. Bring it with you to each doctor visit. Be sure to update the chart if there are any changes in the type or amount of medications the patient is taking.
You can print a medication planner to help keep track of everything. Bring it with you each doctor visit. Be sure to update the chart if there are any changes on the type or amount of medications the patient is taking.
Update contact information
Update contact information for key members of the cancer care team for the patient, including the:
- Oncologist (including emergency contact numbers)
- Nurse
- Primary care doctor
- Pharmacist
- Nutritionist
- Social worker
- Substitute caregiver(s)
- Spiritual counselor
Keep this information posted next to the phone or on the refrigerator so it will be handy in an emergency. Share this information with family members and friends.
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Communicate regularly with others
It is important for the patient to remain connected and supported by others, but not overwhelmed. Keeping people informed can be tiring, and you can play a key role in keeping this balance. Below, find some examples of things you can do.
Create a contact list
- Find out who the patient would like to tell about developments
- Coordinate emails, phone calls or update letters
- Talk about how much the patient wants to be involved in the communications, then keep call and visits manageable
Find discussion topics
Talk to the patient and see what he or she would like people to know. Here are some possible topics to be considered in your communications:
- The latest medical updates from the doctor
- What others can do to help in the day-to-day caregiving
- When is the best time to schedule a visit
- The patient's wants and needs, like taking a daily walk or outlining future treatments for a living will
Be open to discussing whatever the patient is ready for. Open discussion will help you evaluate what is working and what needs to be revised as the patient's health changes.
Communicate effectively with the patient
You may feel like advanced pancreatic cancer has changed your life. It's important for you to talk to the patients about all of these changes. Here are some ways to communicate to your family member or loved one:- Encourage your family member or friend to achieve small goals, if they feel comfortable. Some examples include walking the dog or attending a family wedding
- Give your friend or family member warm touches. Sometimes, that says more than words
- Treat the friend or family member as an adult. Asking – instead of telling – can go a long way in providing positive care
- Be patient. You may encounter power struggles with your family member or friend. Recognize that he or she may be feeling a loss of control at this time
Also, you should be aware of possible memory loss, even after the treatment has ended. Most people who experience memory loss may forget things such as others' names or certain words. Near-normal memory levels usually return about a year or two after treatment. If the patient seems to be experiencing these or other memory-related signs or symptoms, talk with the doctor.
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Care partners need to care for themselves
Care partners often put their own needs and feelings aside. But they need to stay healthy physically and mentally. They need to care for themselves and let others help them, too.
With help from others, you may be able to:
- Stay active and as healthy as possible
- Focus on the important things and let friends or family help with day-to-day tasks, such as food shopping or doing the laundry
- Realize that it is okay to let go of responsibilities in areas where others have more experience or interest, such as legal or financial issue
Here are some small things you could do to restore the mind, body, and spirit:
- Exercise, do yoga, or meditate
- Go for a walk or a drive
- Read, rest, or take a nap
- Work in the yard or keep up with a hobby
Asking for help
Often family or friends want to help but don't know what's needed or how to help. It can help if you let others know how and when they can help. You may need someone to:
- Help with the household chores - cooking, cleaning, shopping, yard work, child care
- Drive to medical appointments or pick up a child from school
- Talk with you about your concerns or feelings
Tarceva in combination with gemcitabine is prescribed for patients with advanced-stage pancreatic cancer whose cancer has spread, grown, or cannot be surgically removed, and who have not received previous chemotherapy.
There have been reports of serious events involving the lungs in a small number of patients taking Tarceva. These events have included death in some patients. The medical name for these types of events is interstitial (in-tur-STISH-ul) lung disease-like events (or ILD-like events).
Liver and/or kidney problems (including deaths) have been reported in some patient taking Tarceva. Let your healthcare provider (HCP) know if you have a history of liver or kidney disease.
Some patients taking Tarceva have developed a hole in the lining of their stomach or intestines (including deaths). It may happen more in patients who are taking certain other medicines or who have certain stomach and intestinal diseases.
Some patients taking Tarceva have developed serious skin conditions. Some patients have died from these conditions.
Patients taking Tarceva plus gemcitabine were more likely to experience bleeding and clotting problems such as heart attack or stroke.
Some patients taking Tarceva have developed eye irritation and damage to the cornea. The cornea is the clear part of the eyeball that covers the colored part of the eye and the pupil. Other eye problems such as abnormal eyelash growth, dry eyes, or changes in eyesight have also been reported.
Patients should tell their HCP about eye problems that get worse. Including eye pain.
Women should not become pregnant while on treatment with Tarceva. If you are already pregnant or become pregnant while taking Tarceva, you should talk with your HCP about the benefits and risks of continuing to take Tarceva.
DO NOT breast-feed while receiving treatment with Tarceva.
Call your HCP right away if you have these signs or symptoms:
- New or worsening skin rash
- Serious or ongoing diarrhea, nausea, loss of appetite, or vomiting
- New or worsening shortness of breath or cough
- Eye irritation
Some patients taking Tarceva have experienced difficulty with blood clotting, and bleeding events, including gastrointestinal and non-gastrointestinal bleeding. Patients taking blood thinners (Coumadin®, warfarin or other coumarin-derivatives) should be monitored regularly.
Certain medicines and herbal supplements can affect how Tarceva works for in the body. It is important that you tell your HCP about all of the medicines and herbal supplements you are taking. DO NOT start taking any new medicines or herbal supplements before talking with your HCP. Tarceva may also affect other medications you are taking.
In addition, grapefruit and grapefruit juice have an effect on how Tarceva works. DO NOT eat grapefruit or drink grapefruit juice while on treatment with Tarceva, except under the care of your HCP.
Smoking may affect how well Tarceva works for you. If you smoke, you should stop smoking before starting treatment with Tarceva. Talk with your HCP about how to quit smoking. If you continue to smoke, you should talk with your HCP before taking Tarceva.
The most common side effects in patients who took Tarceva plus gemcitabine were fatigue “feeling tired”, rash, nausea, loss of appetite, and diarrhea. Other skin changes may also be seen.
The rash from Tarceva plus gemcitabine therapy may appear on your upper body or face. Typically rash occurs within 10 days of starting treatment, but it may occur any time during treatment.
The rash is not an allergic reaction. It may look like acne or dry skin. It is not acne. Talk to your HCP if a rash occurs.
Typically, diarrhea may develop within 15 days of starting Tarceva plus gemcitabine therapy.
Hair and nail changes have been seen with Tarceva.
Always let your HCP know if you have any side effects, and ask about the best way to handle them.
Tarceva is not right for everyone. Ask your HCP if once-daily Tarceva is right for you.
