Resources for Caregivers
Tools and tips to help you and the person you care for navigate DLBCL
How to know if the person I care for has relapsed or refractory DLBCL
Diffuse Large B-Cell Lymphoma (DLBCL) — A type of B-cell non-Hodgkin lymphoma (cancer of the immune system) that is usually aggressive (fast-growing). It is the most common type of non-Hodgkin lymphoma, and is marked by rapidly growing tumors in the lymph nodes, spleen, liver, bone marrow, or other organs.
Conversations with their doctor
Don’t be afraid to ask questions if you don’t understand something. Part of their doctor and their team’s job is to make sure everything is clear.
Write down the questions you may have before the appointment. This can relieve some anxiety and help ensure you don’t forget anything. You can also jot down the doctor’s answers.
Asking questions and having open conversations with their doctor can make a big difference. Here are some general questions you might consider asking about their ZYNLONTA® treatment.
About their treatment
Feel free to download these.
1. Is there anything I can do to help the person I care for through the treatment process?
2. What should I encourage them to do while they are going through treatment?
3. In case of an emergency, where can I find help after hours and on weekends?
4. Which symptoms are more serious than others? When should I call about them?
5. What are the best ways to manage symptoms?
6. Is there anything the person I care for should avoid while they are getting treatment (ie, diet restrictions, physical limitations, etc)?
Planning for the infusion
Ask what to expect or consider throughout treatment.
Things to consider when planning treatment
Before
How do we get to and from the treatment location?
- What is the parking like?
- Are there any transportation services?
What should we know before starting each infusion session?
- What is the process before infusion?
- Does the person I care for need to stop eating at a certain time before treatment?
- What can I do beforehand to make the infusion time better/smoother for the person I care for?
During
What is the total length of each visit?
- How much time should we block off, and how often?
- Do we need to stay on-site, or can I leave and come back?
- Is there a waiting area?
After
How taxing will the treatment be?
- What will their mood be like upon returning home?
- How long will they feel this way before the next treatment cycle?
How attentive should I be?
- How active can they be?
- Will they need my help with anything?
- How much independence or space should I give them?
About your role
1. What caregiver resources do you, the clinic, or ADC Therapeutics (the makers of ZYNLONTA®) make available to me?
2. Is there a network or contact for support I can turn to for help?
3. How might helping out affect my day-to-day?
4. Is there anything else I should know that would help me or the person I care for?
Talk to their doctor’s office about serious side effects
Swelling from fluid build up (fluid retention):
Swelling from fluid build up (fluid retention):
This can be a serious side effect.
Tell their doctor’s office if they have new or worsening:
- swelling or puffiness
- weight gain
- chest pain
- shortness of breath
- trouble breathing
Low blood cell counts (platelets, red blood cells, and white blood cells):
Low blood cell counts (platelets, red blood cells, and white blood cells):
Low blood cell counts are common with ZYNLONTA®, but can also be serious or severe. Their doctor will monitor their blood counts during treatment with ZYNLONTA®.
Tell their doctor’s office right away if they get a fever of 100.4°F (38°C) or above, or if they have any bruising or bleeding.
Infections
Infections:
Serious infections, including infections that can cause death, have happened in individuals treated with ZYNLONTA®.
Tell their doctor’s office right away if they have new or worsening signs or symptoms of infection, including:
- fever
- chills
- flu-like symptoms, like cough, tiredness or weakness, and body aches
- headache
- breathing problems
- cuts or scrapes that are red, warm, swollen or painful
Skin reactions:
Skin reactions:
Serious skin reactions have been reported in individuals treated with ZYNLONTA®.
Tell their doctor’s office if they get new or worsening skin reactions, including:
- sensitivity to sunlight
- a skin rash, peeling, redness or irritation
Their skin may burn more easily or they may get severe sunburns.
You may report side effects to the FDA at (800) FDA-1088 or www.fda.gov/medwatch.
You may also report side effects to ADC Therapeutics at 1-855-690-0340
Financial support
ADVANCING Patient Support (APS) is available to help ZYNLONTA® patients and caregivers. If you’re a caregiver, you can be designated as the contact person on the enrollment form.
Caring for someone with DLBCL is a unique challenge. You shouldn’t have to do it alone. That’s why ADVANCING Patient Support offers resources for caregivers as well.
Once enrolled, reach out to their ADVANCING Patient Support Case Manager (M-F 8 AM-8 PM ET) at 1-855-690-0340 if you have questions about ZYNLONTA® treatment or need additional support.
10 things to know as a caregiver
Feel free to download this.
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1
You are an important member of their care team
Don’t be afraid to speak up. Ask questions, and take notes during doctor’s visits.
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2
Keep the person you care for involved in their care
Let them make their own decisions whenever possible. You and their care team can help keep everything on track.
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3
Also take care of yourself
Take the time to recognize when you are feeling stressed or burned out. Meditate, exercise, get a good rest, see your friends, take some time for yourself—whatever you need to be at your best.
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4
Set boundaries
Encourage the person you care for to care for themselves as much as they can. This will keep them more engaged in their treatment.
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5
Forgive yourself
Caregiving is not an exact science. Everyone makes mistakes. Some days you’ll do better than others. Focus on what you did and are doing well.
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6
Don’t try to do everything by yourself
This is not a solo job. It is a team effort. Reach out for help when you need it. Make a list of the areas where you most need help. Include the names of the people most likely to be able to help.
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7
Have open conversations with the person you care for
There is a special bond between the caregiver and the one receiving treatment. Make sure you know what they are feeling and thinking, and that they know the same about you.
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8
A positive attitude will take you far
It’s not always easy to keep your chin up, and that’s okay. But focusing on what’s going well can up your spirits and make things easier.
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9
Education helps
There are plenty of resources out there for you to learn about lymphoma. Learning more can help you assist the person you care for during doctor visits. It can also help you relate to their experience. What’s more, these resources can help you understand the positives to focus on.
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You’re not alone
Taking advantage of caregiver resources, including online support groups, can ease a lot of the burden. It can also give you an outlet for any stress or frustration you may be feeling.
Additional resources
Caregiver Action Network
1-202-454-3970
www.caregiveraction.org
Family Caregiver Alliance
1-800-445-8106
www.caregiver.org
Friends’ Health Connection
www.friendshealthconnection.org
Lymphoma Peer Support Network
https://lymphoma.org/resources/supportservices/lsn/
Education Programs
https://lymphoma.org/resources/educationresources/programs
Educational Resources
https://lymphoma.org/resources/educationresources/publications
Get info on antibody-drug conjugate technology
Antibody Drug Conjugate — Also called ADC. A substance made up of a monoclonal antibody (also called mAb) is chemically linked to a drug. The mAb binds to specific proteins found on certain types of cells, including cancer cells. The drug enters these cells and kills them. Some ADCs are used to treat cancer.
