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Finding support

It's normal to want support while living with cancer. Since CAR T-cell therapy (CAR T) involves many different steps, you may need support in ways you haven't needed before. You may be surprised at the number of people and organizations out there that can help you.

Video: Preparing for CAR T
Image of video titled Preparing for CAR T: Terry and Cheryl’s Story.
Video: Preparing for CAR T
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Who can I ask for support? What types of support should I consider? How do I ask for help?
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Who can I ask for support?

You can build a circle of support based on your specific needs. Everyone's support system will look different and it doesn't have to be an existing circle of close family and friends. Here are some common examples:

  • Family, friends, and community
  • Hired care worker
  • CAR T treatment team
  • Advocacy and support groups
  • Local cancer healthcare team
  • Other healthcare professionals
  • CAR T manufacturer

Many CAR T medical centers and advocacy groups have people whose role is to help you find the support you need—you don't have to figure it all out on your own.

Illustration of a support team including healthcare team, family, and friend.

What types of support should I consider?

You can consider the types of support below as a starting point. You may need to apply and qualify to receive them.

Caregiving

You will need to find one or more caregivers throughout your treatment. Caregivers are an important part of the CAR T treatment process.

Plan ahead to find a caregiver, or caregivers, that can stay with you and support you through treatment—they could be a family member, a friend, or someone you hire.

Along with other common caregiving duties, a CAR T caregiver should be prepared to:

  • stay with you after your CAR T infusion to closely watch for possible symptoms of side effects
  • arrange transportation or be the driver during your recovery
  • help out with normal daily activities you may feel too tired to do

Caregiving responsibilities can be shared across more than one person.

Where can I learn more?

You will need to find one or more caregivers throughout your treatment. Caregivers are an important part of the CAR T treatment process.

Educational

Your healthcare team is your main resource when it comes to understanding your treatment. There are also programs that connect you with information specialists, or to patients and caregivers with cancer experience.

You may want help understanding more about your treatment options, cancer, and other medical information.

To learn more about cancer and CAR T, you can:

Where can I learn more?

Your healthcare team is your main resource when it comes to understanding your treatment. There are also programs that connect you with information specialists, or to patients and caregivers with cancer experience.

Financial

There will likely be costs that go along with CAR T, beyond the cost of the treatment itself. Your health insurance may provide coverage of these extra costs. Other programs may also be able to help.

You may need to plan for costs directly related to CAR T, such as:

  • hospital stays
  • tests and procedures
  • the treatment itself
  • medications

Extra costs to consider may include:

  • transportation (e.g., airfare, taxi, train, car rental, gas, etc.), lodging (e.g., hotel), and food—especially if you do not live near a CAR T medical center
  • hiring someone to help with caregiving, childcare, housework, or other responsibilities
  • income loss from being away or taking time off work

There are many foundations and societies that provide financial navigation and support services to patients and caregivers. Financial support can come in many forms, like grants, coupons and vouchers, reimbursements, or volunteers.

Where can I learn more?

There will likely be costs that go along with CAR T, beyond the cost of the treatment itself. Your health insurance may provide coverage of these extra costs. Other programs may also be able to help.

Mental or emotional health

You may already have ways to cope with feelings on your own. It can also be helpful to ask for support from a professional. You don’t have to go through this experience by yourself.

The start of a new treatment can be overwhelming, with uncertainty and mixed emotions. There are many different ways to find a place where you can feel comfortable talking about what's on your mind, including:

  • seeking counseling or professional help from a therapist or social worker
  • speaking with a spiritual leader, a peer-to-peer support group, or with other patients or caregivers about their experiences
  • connecting with an advocacy group
  • asking for help with caregiving or practical things
  • practicing self-care with meditation, journaling, art therapy, or more

Even a few sessions or conversations can make a big difference to your mental and emotional health.

Remember that:

  • everyone is different—what worked well for someone else may not work for you (and vice versa!)
  • trial and error is normal as you figure out what works well for you
  • finding the right fit is important when it comes to therapy and you may need to speak with a few people to find someone you click with

Where can I learn more?

You may already have ways to cope with feelings on your own. It can also be helpful to ask for support from a professional. You don't have to go through this experience by yourself.

Physical well-being

You may want help adjusting habits or setting new ones to stay physically well as you go through treatment.

Doing small things each day can add up to making a big difference in how you feel. You may want support or consult with a professional to work on these areas:

  • nutrition (to cope with appetite and weight changes)
  • healthy sleep habits
  • exercise and recreation
  • physical therapy

Where can I learn more?

You may want help adjusting habits or setting new ones to stay physically well as you go through treatment.

Practical

Since you may be away from home for weeks, you may want help with a range of things like caring for your family, your home, transportation, and more.

While everyone's lives are different, here are some practical needs that may come with CAR T treatment:

  • shopping for groceries or preparing meals
  • managing household chores (e.g., laundry, yard work)
  • doing research about medical topics or terms
  • booking travel and lodging, and packing for travel
  • picking up your mail or checking on your home while you're away for treatment
  • helping with family care (e.g., children, elders)
  • looking after your pets
  • paying your bills

This can feel like a lot to think about, but help in even a few of these areas can make a big difference. Your CAR T treatment team may also give you a treatment schedule for when and where you need to be, so you don't have to know all the details by heart.

Where can I learn more?

Since you may be away from home for weeks, you may want help with a range of things like caring for your family, your home, transportation, and more.

How do I ask for help?

You can think about what you might need help with to make you feel more prepared and make asking easier:

  • Do I have a place to stay near the CAR T medical center, that is less than 2 hours away?
  • Do I need help with the following?
    • Driving or transportation
    • Personal tasks (showering, getting dressed, etc.)
    • Chores (cooking, cleaning, paying bills, etc.)
    • Emotional support and counseling
    • Organizing and planning
    • Housekeeping
    • Family care (children, elders, pets, etc.)
  • How long might I need help?
  • Based on what I need help with, do I know anyone that could help, or will I need to hire support?
  • Will my insurance or other programs provide any coverage for support?
Illustration of patient and their support circle.

You can share information about CAR T with others, so they can understand what you might have to go through, and what you might need help with. Don't be afraid to be specific and set boundaries.

Finding someone you get along with is important and you don't have to go with the first person you reach out to. You may need to speak with multiple people, especially if you're looking for different types of support.

It's not always easy to ask for help, but remember that there are people and organizations who want to help.

Keep in mind that everyone is unique, and different forms of support can be more helpful to some than others. Talk to your healthcare team if you're not sure about where you can get support.

What questions might I ask my CAR T healthcare team?

  • What support might I need?
  • How long will I need a caregiver for?
  • How do I get the support I need? Who can I talk to about finding support?
  • What types of support can the CAR T medical center or manufacturer provide?

Let's chat about CAR T—One-on-One

Illustration of two people on the phone, chatting one-on-one about CAR T.

Connect with real patients and caregivers who can share their experience with CAR T.

Illustration of two people on the phone, chatting one-on-one about CAR T.
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