REVLIMID® (lenalidomide) is a prescription medicine used to treat adults with a condition called myelodysplastic syndromes (MDS). REVLIMID is for the type of MDS with a chromosome problem where part of chromosome 5 is missing. This type of MDS is known as deletion 5q MDS. People with this type of MDS may have low red blood cell counts that require treatment with blood transfusions. REVLIMID should not be used to treat people who have chronic lymphocytic leukemia (CLL) unless they are participants in a controlled clinical trial. It is not known if REVLIMID is safe and effective in children.
Your role as a caregiver is an important one
Not an actual patient.
Being a caregiver
A caregiver is someone who provides emotional and/or physical support to someone going through an illness. There are different types of caregivers, including:
- family members
By supporting a friend or family member receiving REVLIMID, you can help him or her through their treatment. Click on the links below to view tips on being a caregiver.
Tips for providing emotional support
Ask your loved one how he or she is feeling so you can share this with the treatment team
Be understanding when he or she is no longer able to do something
Provide encouragement and be there to listen
Make sure your loved one knows how important he or she is to you
Let him or her set the tone and topic of conversation when talking about his or her condition
Balancing doctor appointments, dosing schedules, and household responsibilities can feel like a full-time job. If you are able to do so, make the most of your time with the doctor or nurse by coming prepared.
Things you should bring to the doctor’s office
- Contact information for all physicians, specialists, and therapists
- Insurance information and any financial issues
- List of patient’s allergies
- Notes on how the patient is feeling or changes in how they feel
- Schedules of other appointments
- List of other medicines, dosing schedules, and side effects
- List of any questions
Tips for supporting your loved one
- Stay informed to have more effective conversations about his or her health, and go with him or her to doctor visits, if possible
- Make sure that the patient takes the doctor-recommended dose on schedule as prescribed
- Keeping a detailed notebook, planner, or calendar can help you and the person you’re caring for keep track of doctor visits, changes in his or her health, and dosing of medications
- Understand important side effects so you know when to reach out for medical support and how to help the patient
Working with the treatment team
As a caregiver, you are involved in someone’s medical care. It’s important to work together with the treatment team. Some questions you may want to ask about the practice are:
- When is the office open?
- Who would I contact after office hours or if there is an emergency?
- When and how is the best time to contact the office?
- Who can I go to with questions when the doctor is not around?
When to contact the doctor’s office
You may have specific questions for the treatment team at any point in a patient’s care. It’s important that you feel confident reaching out when you need information. Some things you might want to learn more about are:
- The patient’s diagnosis
- A change in the patient’s health
- A concern about a new symptom
- A new medication or changing medication
- Possible side effects
- The results of lab tests
Caring for 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.
Focusing on yourself
Taking care of yourself can make it easier to take care of someone else. It’s important for you to stay healthy and positive so you can do your best job as a caregiver. Here are some things you can do to take care of yourself:
- Allow time for yourself by taking breaks to walk outside, watch television, read, or take part in a hobby
- Balance your schedule with that of the patient by keeping a planner or calendar to make a list of tasks that you need to do each day
- Express yourself by being open and honest with others about your emotions, or by joining a caregiver support group
- Stay healthy by making sure to visit your doctor for routine check-ups; watch for depression or other stress‑related symptoms
- Maintain a balanced diet, exercise regularly, and get 8 hours of sleep a night
Reaching out to others
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. There may be more to do than you can handle on your own. Here are tips to help you share caregiving activities:
- Be honest with yourself about what you can do and learn how to pass on responsibilities
- If someone does offer to help, be willing to accept it no matter how much or how little the offer is
- Let people know what they can do as they might not know what’s involved in caregiving
- Make a plan with friends and family of what needs to get done now or later
- Let go of tasks that aren’t important at the time, because you can always pick them up again
As a caregiver, you are not alone in taking care of someone with a chronic illness. There are several organizations that offer help and guidance to caregivers:
- National Alliance for Caregiving
- Caregiver Action Network
- Well Spouse Association
This list of independent organizations is provided as an additional resource for obtaining information related to myelodysplastic syndromes (MDS). Inclusion on this list does not indicate endorsement by Celgene Corporation, a Bristol Myers Squibb company, of an organization or its communications.
- National Alliance for Caregiving