Staying Informed & Organized

Be Informed

Given the complexities of multiple myeloma and the available treatment options, clear and frequent communication between you, your loved one, and their healthcare team is critical.

Here are a few things other patients and caregivers suggested you can do to keep the lines of communication open between you, your loved one, and their entire healthcare team:

• Let the healthcare team know that you are a key member of your loved one's health management team.
• Share any concerns you have about the mental or physical health of your loved one with their healthcare team.
• If you live with your loved one or just spend a great deal of time with them, you may know things about them that the healthcare team may not be aware of.
• Be ready to advocate for your loved one if he or she is not able to.
• Attend medical appointments and take notes.
• From the first diagnosis, gather information at the time of each office visit and procedure.
• Review your notes with your loved one.
• Keep a list of current medications handy at all times.
• Ask questions – and keep asking until you understand the answer.
• Make sure that you understand the facts about multiple myeloma and the proposed treatment plan – misunderstandings can make a stressful situation even more so. Now is not the time to be shy about speaking up if you don't understand something.
• Make a list of questions between doctor appointments and remember to bring them with you to the office, hospital, or pharmacy.
• Ask providers the best way to communicate with them (email or phone calls).
• Ask to be assigned an oncology social worker to help address financial and emotional needs of both you and the patient.

Be Organized

Caring for someone with multiple myeloma can also mean taking charge of paperwork. There is a continuously growing pile of medical records, insurance claims, and other documents that can quickly become overwhelming. But, because you may need to refer to these documents on a regular basis, figure out a way to keep the information well-organized and easily accessible.

Organize yourself in a way that is going to make the most sense to you, but consider these suggestions from other caregivers:

• If you are comfortable with computers and have access to one, many caregivers suggest keeping all key information in electronic files.
• Some organizations offer online programs that help caregivers store and track test results and other medical records:
• LIVESTRONG.org
• Myeloma Manager™ from the Multiple Myeloma Research Foundation
• Use a tabbed notebook with pocket dividers.
• File documents in their appropriate places every few days.
• Divide your binder into sections. Possible categories may include blood work, radiology, bone marrow biopsies, consultation reports, chemotherapy protocols, current medications, and hospital stays.
• Create a contact list with the names, telephone numbers, and locations of hospitals, doctors, and pharmacies and post it above a phone that you frequently use.
• Post a calendar in a central location (such as in the kitchen) with all upcoming appointments.
• Keep all medications in one place with instructions on how and when they are to be taken.

Be Prepared

One of the most frustrating aspects of being a caregiver can be finding out that despite all you do, you cannot make the physical pain of multiple myeloma go away or alleviate the side effects of treatment.

• The pain caused by multiple myeloma can be intense, and even medications can fall short of providing needed relief.
• The medications used to treat the multiple myeloma may cause other side effects, such as nausea or vomiting.

Your loved one has likely never been this sick before, so they may not be able to accurately describe how they feel or what is happening to their body.

If pain medications are not working, or the side effects are worrisome, contact your loved one's healthcare provider. Don't be embarrassed or uncomfortable telling the doctor if something isn't right. Remember, you're the advocate!

Your loved one might experience different types of pain, such as bone pain or neuropathy, which may arise from the disease itself or the medication they may be taking.

• Most pain can be managed, so speak up and ask for help for your loved one.
• Seek the advice of a pain specialist if you and the healthcare team think it is needed.
• Learn all you can about the side effects of the medications your loved one is taking, including whether pain might occur as a result of a medication.
• If your loved one is not tolerating one type of pain medication, ask if there is another pain medication that they could try.
• Watch for signs of pain or discomfort.
• Ask your loved one what you can do to make him/her more comfortable.
• Encourage the patient to stretch after a hot shower or exercise since moving can help avoid stiffness. Check with their healthcare provider before engaging in physical activity.