Caring for yourself or a loved one

Advice for caregivers

Make a “holistic” plan

It takes more than medicine to manage multiple myeloma. A holistic plan addresses more than just the symptoms and disease and takes care of your mind, body, and spirit. Here are some ideas that can help you get started:

Managing your mind

There’s a powerful mind-body connection that may affect our health. In fact, research has shown that mindfulness meditation may help relieve anxiety, stress, fatigue, and sleep disturbances, and improve general mood and quality of life for people who suffer from cancer symptoms and treatment side effects. Mindfulness meditation is the practice of being in the present moment and can be learned on your own.

You should find a quiet space to meditate. You don’t need an entire room or a completely empty area. Just make sure there are no distractions such as the television, phone, or computer. Sit comfortably with your feet supported, your back comfortably straight (not rigid), and your hips higher than your knees. Allow your gaze to fall at a point a few feet in front of you, but do not focus on a particular object.

As you experience the moment, thoughts will come into your mind. They should be allowed to flow freely. If the thoughts become a central focus, gently bring your mind back to the moment. One way of doing this is to be aware of the sensation of your breathing and using this as an anchor for your mind to come back to should it wander. In the beginning of your practice, aim to sit for 10 to 15 minutes and build up to sitting for 45 minutes to 1 hour.

There are apps that can help you develop your practice. If you need additional help in getting started, look online for classes in your area.

Matt,
on attitude

“There are times when having a positive attitude is a little bit tough, but overall, I try to have a positive attitude.”

Taking care of your body

There is no “multiple myeloma diet.” However, a nutritious, well-balanced diet can help you stay as healthy as possible for as long as possible. Fresh fruits, vegetables, whole grains, and lean proteins, such as fish, poultry, or beans, are recommended. Limit your use of cream-based sauces, dressings, and dips, and avoid refined carbohydrates, such as pastries and sweetened breakfast cereals. Drink about eight to ten glasses of water a day.

Be sure to talk to your healthcare provider before making any changes to your diet.

Regular exercise can help you reduce stress and relieve fatigue. Talk to your doctor before you start a new exercise program. Set goals to slowly increase your activity level. You may want to take a walk, do yoga, or try range-of-motion exercises to help reduce tiredness, relieve stress, and improve your sense of well-being.

Sleep problems are common during treatment for multiple myeloma. Experts say you should try to sleep seven to eight hours each night. Here are some tips that can help:

  • Avoid caffeine in coffee, tea, soda, or chocolate
  • Don’t exercise too late in the evening
  • If you nap, make it less than 30 minutes and do it early in the day
  • Avoid too much time in bed. It can make you weak

If you have trouble sleeping, talk to your doctor.

Understanding your emotions

Depending on how long you’ve been living with multiple myeloma and its treatment, you could feel anxious, afraid, uncertain, angry, or depressed. It’s normal to have any and all of these feelings. Your feelings may also change over time. That’s normal, too. Here are some things you can do to deal with your emotions:

Keeping up your daily routine

There’s no doubt that having multiple myeloma and going for treatments is going to disrupt your schedule. Try to live each day as normally as you can.

Think about how you want to spend your time. What makes you happy? What types of things do you enjoy the most? What gives you “purpose”? If you feel well enough, and with a doctor’s guidance, you may be able to continue to do what you did before your diagnosis and treatment, including:

  • Going to work
  • Spending time with family and friends
  • Taking part in activities
  • Going on trips

Working with your doctor: Shared decision-making

Taking part in the decision-making process is one way to ensure that you get the best care for you. Studies have shown that shared decision-making has numerous benefits. Among them:

  • Increased confidence and satisfaction with your treatment
  • Enhanced trust in your healthcare team
  • Decreased stress and anxiety regarding decisions

The key to shared decision-making is having open discussions with your healthcare team. Here’s how you can start:

  • Express your desire to be involved in treatment decisions
  • Ask questions to understand your options
  • Let the doctor know your goals, values, and preferences
  • Ask for time if you need it (and if it’s appropriate)
  • Arrive at a treatment decision together

Remember, you are your own best advocate.

Tom,
DARZALEX® patient, on who has the final say

“My team makes suggestions on what approach they feel will be most beneficial. They collaborate and come up with a plan, but I as the multiple myeloma patient have the final say on my treatment.”

Janssen CarePath will help you find the resources you may need to get started and stay on track