As a caregiver, where can I find support and resources?

Where can I find support as a caregiver?

One of the biggest challenges you may face as a caregiver to a person with metastatic (meh-tuh-STA-tik) breast cancer (MBC) is asking for help. Balancing your loved one’s needs with your own can be challenging. But you don’t have to go through it alone. Here are some tips to help you get the support you need.

Do Your Research

Learn as much as you can about MBC and your loved one’s treatment plan.

Communicate Clearly

Be clear and direct so you can learn how best to help your loved one.

Spend Time Together

Besides attending doctor visits together, do things that have nothing to do with your loved one’s illness, like going to a movie or taking a walk outdoors, if your loved one is able to.

Share Your Role With Others

Look for other family members or friends who are willing to share the caregiver role with you.

Participate in Office Visits

When you take your loved one to doctor visits, be sure to take notes and ask questions. Knowing what to expect and understanding what is happening can help you feel less helpless.

Accept Your Feelings

It’s natural to feel anger, grief, or guilt at times. Having these feelings doesn’t mean that you don’t love your family member or that you aren’t a good caregiver. They’re perfectly normal.

Ask Others to Help

Make a list of activities that other friends or family members can sign up for. They may be waiting to find out what they can do to help.

Be Specific

Often people around you want to help but don’t know how. Asking for help with specific tasks will help them offer the help you really need.

Don’t Be Shy

If your friends and family members offer to help out and share the workload, accept it.

Keep Up Your Own Physical Health

It is important to eat well, exercise, and get fresh air and rest so that you can be relaxed and positive.

Know Your Limits

We all have our limits. Be realistic about how much you can take on and ask for help from others. Others may have different skills they can bring to help manage tasks you don’t feel prepared to take on.

Connect With Other Caregivers of People With MBC

There is no substitute for talking to people who are going through the same experience as you.

Remember, asking for help doesn’t mean that you’re not a good caregiver. It allows you to focus on the bigger responsibilities of a caregiver for a loved one with advanced cancer.

For more information on caregiver support, visit the following organizations. Many have numerous resources and avenues for connecting with other caregivers.

The independent organizations listed are provided as an additional resource for obtaining information related to cancer and advanced breast cancer. Inclusion on this list does not indicate endorsement by Celgene Corporation of an organization or its communications.

As a patient, where can I learn more? Support and resources

Where can I find support?

Support can come from many sources—your family, friends, colleagues—even strangers who eventually become friends as you join a community of people facing similar challenges. Support can also come from organizations that provide resources to help you better understand what to expect living with metastatic (meh-tuh-STA-tik) cancer. Knowing what to look for and where to turn are key to getting the support you need.

How can I get the support I need?

Family members, friends, neighbors, coworkers, and other people close to you are among your most important care partners. Your cancer diagnosis affects everyone who cares about you. Many of the people in your personal circle want to help but may not know how.

Here are some things you may want to ask your caregivers to help you with:

• Gather information, and help you make decisions
• Go with you to doctor visits and checkups
• Make a list of your medical and emergency contacts
• Help with financial, legal, or health insurance matters
• Organize volunteers to bring you meals, take you to treatments, or run errands for you
• Help keep up your appetite, weight, and strength by cooking tempting foods and creating pleasant settings for meals
• Listen when you need to vent your feelings or frustrations
• Entertain you or keep you company when you want to relax or have fun
• Help with household chores like laundry, cleaning, grocery shopping, or dog walking
• Go for walks with you to help you stay active

How can I talk to my loved ones about my cancer?

Letting your family and friends know about what you are going through can bring you comfort. But it can also be stressful. People do not always react the way you hope they will. These tips may help make it easier to talk with others about your cancer.

• Give some thought to what you might say. Think about what you want other people to know and write it down
• Decide who to tell and when. You may want to start with a close friend who has “been there for you” in the past. Choose a time to talk that feels right to you
• Find the best way to share the information. You may want to tell some people face to face, some on the phone, and others by sending a letter or e-mail
• Seek expert advice. If you are unsure of what to say, it might help to talk with an oncology social worker or other people who are living with advanced cancer
• Keep talking. If friends or loved ones react poorly or cannot handle your news, let them know how that makes you feel. Give them a little time to face their own fears about your cancer

Patient Resources

The downloadable resources available on this website have been developed to help you

• Be prepared for treatment
• Work closely and effectively with your healthcare team
• Receive and remember important information during treatment

Preparing for My Treatment

Offers practical tips and a checklist of steps to take to help prepare yourself for treatment. Also includes questions to ask your doctor or nurse, with spaces to write down the answers you are given.

Patient Brochure

Provides in-depth information about treatment with ABRAXANE, including how it works and what to expect, as well as resources to turn to for more information and support.

Patient Brochure (Spanish)

Provides a Spanish-language version of in-depth information about treatment with ABRAXANE, including how it works and what to expect, as well as resources to turn to for more information.

Web Book/iBook of Patient Brochure

Interactive digital versions of the patient brochure for use on PCs, Macs, and portable devices.

Treatment Diary

Helps you stay organized by keeping track of appointments and any symptoms you may experience so that you become more aware of how treatment with ABRAXANE may affect you.

Doctor Visit Discussion Guide

Helps you talk about treatment with ABRAXANE with your doctor before treatment begins.

Questions for My Healthcare Team

Lists frequently asked questions about ABRAXANE and provides space for you to write your own questions for your healthcare team.

Where can I find information and support online?

Your need for services, support, and information about metastatic breast cancer (MBC) may change over time. Knowing where to find the resources you need to help manage these challenges can help you feel more in control. Use the resources listed below to get answers, advice, and help from advocacy groups and peers who understand the needs and concerns of people with MBC.

These organizations do not replace talking with your doctor. Ask your healthcare team about other resources they can recommend.

The independent organizations listed are provided as an additional resource for obtaining information related to cancer and MBC. Inclusion on this list does not indicate endorsement by Celgene Corporation of an organization or its communications.

Where can I find cultural resources?

Cancer is individual and very personal. One person’s experience may be very different from another’s experience. There are many things that make living with any illness personal, including a person’s culture or ethnicity. The organizations listed below offer information and resources specific to certain ethnic groups and cultures.

Ambassador stories

One of the most valuable sources of support are other people who are facing the challenge of metastatic breast cancer (MBC). At Celgene, we call them Patient Ambassadors.

They are patients and caregivers who choose to share their stories with others. Through their voices comes the understanding that you are not alone in your diagnosis of MBC but a part of a community.

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Patients & Caregivers

Reba’s Story

Reba shares the benefits of having a positive outlook while living with metastatic breast cancer, the difficulties she has had as a single mother, and her treatment with ABRAXANE. You will also hear from Tammy English, a registered oncology nurse, who will discuss metastatic breast cancer and ABRAXANE as a possible treatment option.

I am looking forward to the rest of my life, and treating every day as a gift, hoping that my days will include many milestones in my daughter’s life. But also in my own life. Yes, I do have my own milestones. Every day is a milestone. You see, I don’t live just for Sloane. I also live for Reba.

– Reba

Sarah and Sheila’s Story

Sarah shares her personal story of being diagnosed with and living with MBC, being a mother of small children and treatment with ABRAXANE. Sheila also shares what it’s like to be a mother of someone living with MBC, and how she supports her daughter while dealing with the disease. You will also hear from Tammy English, a registered oncology nurse, who will discuss metastatic breast cancer and ABRAXANE as a possible treatment option.

I have seen not only Sarah’s courage and determination, but also the courage of countless women with metastatic disease who have wrestled their lives back into their own hands, determined to live in the tenuous present, for their husbands, for their children, for their parents, for their siblings, for their friends.

– Sheila (Sarah’s mom/caregiver)

Della and Kathy’s Story

Della and her sister Kathy share Della’s story of being diagnosed and living with MBC. They also talk about the challenges of being a single mom, overcoming financial hurdles, treatment with ABRAXANE and how Kathy supported her. You will also hear from Tammy English, a registered oncology nurse, who will discuss metastatic breast cancer and ABRAXANE as a possible treatment option.

The oncologist at the cancer center then told us that ABRAXANE was the treatment she’d recommend for my sister. But Della was so worried about money. I kept telling her not to worry. The last thing a cancer patient needs is to stress about finances. And I explained that I was going to get in touch with the Celgene Patient Support^® program, or CPS, to see what they could do to help.

– Kathy (Della’s sister/caregiver)

Carol and Gene’s Story

Carol and her husband/caregiver Gene, talk about the value of family, their story of living with metastatic breast cancer, and treatment with ABRAXANE. Gene provides perspective as a caregiver on how difficult it can be to deal with a loved one being diagnosed, and helpful ways to support them through this trying time.

We’re both going through this together. She’s the one that has the disease, but we’re going through it together. You put your arms around that person and you tell them ‘I love you and we’re in this together.’ We know that eventually things will change. We try to have a good time every day, the small moments together are very important.

– Gene (caregiver)

Della’s Story

Della discusses her story of living with metastatic breast cancer, the worries she had after being diagnosed, and her treatment with ABRAXANE. She also speaks about the importance of trusting her oncologist and how Celgene Patient Support^® was able to help her receive ABRAXANE, despite her lack of insurance.

My doctor and I talked about treatment with ABRAXANE and we felt like that would be the best treatment for me. I found financial assistance through Celgene Patient Support^®, and that eased my mind a lot. You do have to be proactive. Talk to your doctors and nurses, have a strong support group around you, and stay positive.

– Della (patient)

Social Workers

Full Video

Sage Bolte, a licensed clinical social worker discusses working towards emotional balance, the importance of communication and additional resources to assist you after being diagnosed with and while living with metastatic breast cancer.

For your convenience we broke this video into 3 shorter video clips highlighting separate topics:

Working Towards Emotional Balance

Guilt is such a hard feeling for us to carry; it is so critical that you remind yourself if guilt comes up that you did not ask for this diagnosis, you did not ask for the cancer… sharing with your friends and family what you’re feeling, that your feeling guilty about the changes it’s creating in your family and having a conversation about that can be really helpful.

– Sage Bolte, PhD, LCSW, OSW-C

Tips For Communicating

They won’t know what they don’t know so if you’re concerned, if you’re worried, if you have a discomfort or pain, if you feel anxious, make sure to tell your healthcare team.

– Sage Bolte, PhD, LCSW, OSW-C

Resources To Assist

We have the tendency to want to be super moms or super workers or super wives or super colleagues or super patients. And sometimes, we need to just accept our limits that we can’t necessarily run the marathon we used to. But we can walk to the mailbox today, and that today is an accomplishment.

– Sage Bolte, PhD, LCSW, OSW-C