Living with multiple myeloma (MM) and undergoing treatments can take a toll on a person’s outlook and mental health. Spending a lot of time at the hospital, dealing with symptoms and side effects, worrying about prognosis, and undergoing cancer treatment can be an isolating — even depressing — experience.
Fortunately, there are powerful ways to fight back against negative feelings associated with living with MM. Working to cultivate a more positive outlook regarding your experience and relationship with the disease can improve your quality of life while living with MM.
They say knowledge is power, and that is certainly true when it comes to a multiple myeloma diagnosis. Educating yourself about the disease and what to expect throughout your myeloma journey can help alleviate some fears of the unknown. It can also allow you to play a more active role in your health care, boosting your sense of control and helping you be your own advocate.
Start by maintaining clear, open communication with your health care team. Ask clarifying questions when you don’t understand something. This is especially important when it comes to aspects of myeloma that may be particularly concerning, such as your own prognosis.
These test results help to determine the predicted survival rate for myeloma patients. The prognosis for MM decreases with each MM stage. For stage 1 multiple myeloma, the prognosis is five years. The prognosis decreases to 3.5 years for stage 2 and to 2.5 years for stage 3.
That being said, MM prognosis has improved over the past 20 years due to more efficient diagnostic testing and more effective treatments. People who are diagnosed earlier and who respond better to treatments can live a lot longer and even go into complete remission. This means it is possible to live up to, or even beyond, 20 years with MM.
Ultimately, your prognosis will likely depend on your treatment plan, your medical history, and the stage of your myeloma.
Multiple myeloma is a blood cancer that is created by uncontrolled and abnormal growth of white blood cells, called plasma cells, in the bone marrow. The most common symptom of MM is anemia (low red blood cell count), which causes shortness of breath and fatigue.
Note that people living with MM will face different symptoms and that each person will experience certain symptoms differently.
These symptoms can have significant effects on your daily life, but you don’t have to accept severe pain, discomfort, or fatigue as your new way of life.
It is important that you stay in close contact with your health care team. Alert them if your symptoms worsen or feel unmanageable. Working with your oncologist and other myeloma specialists to keep your symptoms under control is one of the first steps to maintaining your quality of life while living with myeloma.
Tracking and managing symptoms that negatively affect your quality of life can help to improve your outlook by improving how you feel. Discussing efficient treatments with your doctor can help you gain a sense of control and minimize feelings of fear or uncertainty.
One member shared their positive treatment experience: “When I was diagnosed with stage 3 MM, my blood work showed I was good for surgery. Chemo and radiation with Velcade and dexamethasone saved me. Stay positive.”
Keeping up to date on new treatment options may also help instill hope and create a positive outlook. When successful, newly developed treatments can further elevate your overall well-being and quality of life. You can check the National Cancer Institute for clinical trials that are currently looking for participants.
There is a correlation between MM and mental health challenges, including depression, anxiety, and stress. A positive outlook is not just a switch that can be turned on — especially for MM patients. Recognizing a distinct change in your mental health is a big first step to take.
If you find that your mood has been affected since your diagnosis, you don’t need to suffer in silence. Start communicating your struggles to people you trust and to your health care team. Although some people may be wary of sharing emotional struggles with others, getting the support you need can have a huge positive impact on your outlook and everyday life. Plus, your doctor can help to rule out physical conditions that could explain your symptoms. For example, high calcium levels can look like depression.
MyMyelomaTeam members have reported taking many approaches to caring for their mental health, including counseling and medications to treat anxiety and depression. One member reminded others that dealing with these struggles can help you save energy you’ll need elsewhere: “I think a certain amount of anxiety is inevitable in the short term. If it affects you, please address the issue, since you have other battles to fight.”
Getting rest whenever you can is important to fight the fatigue that comes with having MM. Other than medically treating the underlying causes of fatigue, like anemia, getting little moments of rest can help you stay ahead of fatigue.
Implementing sleep hygiene protocols at bedtime can improve sleep and lessen fatigue. One member recommended this bedtime routine to members struggling to get enough rest: “Try chamomile tea, a hot bath, and a sleeping pill like melatonin before bedtime. Activity during the day, limited naps, and avoiding caffeine can all help with sleep.”
Although balancing doctor’s appointments with everyday life can sometimes be challenging, maintaining your hobbies can greatly improve your outlook. It may even have a positive impact on your body’s response to treatment. Try to take time each day to do things that bring you joy, whether that’s curling up with a good book, getting creative, or working with your hands.
It’s important to follow medical guidance and to make adjustments to any high-risk hobbies as necessary — particularly physical activities. One member recommended physical therapy to help other members get back to the physical activities they love: “Have you looked into physical therapy? Your oncologist may be able to give you a referral. I did physical therapy for six months to gain balance and mild exercise to loosen my muscles. It would be a shame to lose something you enjoy.”
Exercising, meditating, and keeping up a proper diet can fight off depression and increase energy levels. Research shows that people living with MM who exercise and continue doing activities they enjoy not only cope better but may also live longer. Don’t forget that avoiding bad habits — such as smoking and excessive drinking — that negatively impact your mental health is just as important as implementing healthy ones.
One MyMyelomaTeam member expressed the importance of adjusting diet as you go: “Diet and exercise seem to be the only things that help me. I have to keep adjusting my diet every time my digestive system goes out of control.”
Some members have shared the ways they’ve continued to do their favorite physical activities. “I golf,” shared one member. “Doctors said it’s OK as long as I swing easy and don’t use the driver.” Another member added, “I’m starting physical therapy now. They said golf would be OK, but to progress into it gradually and not overdo it.”
Another member was thrilled to find that they could adapt their yoga practice to their new circumstances: “I had to give up yoga because it was too painful. I will certainly try chair yoga. Thank you!” Another member started doing water aerobics instead of swimming.
Practicing gratitude is a great way to bring moments of positivity to your everyday life. For some members, an unexpected side effect of MM is gratitude for each new day. One member wrote: “Aside from the physical discomfort, having MM has been a blessing. My focus is on family, friends, and living each day to its fullest. I’ve probably done more this past year to live each day to its fullest than ever before.”
Coping magazine suggests several ways for those with cancer to practice everyday gratitude. Tips include keeping a gratitude journal, creating a space at home or work for positive messages, and writing a letter to someone you are grateful to have in your life.
If financial concerns are adding to your anxiety and stress, it’s important to address these stressors directly. Apply for disability benefits sooner rather than later if maintaining employment is becoming increasingly difficult. Being proactive about your manageable stressors is key to creating a positive outlook.
One MyMyelomaTeam member recommended fighting for disability benefits with the help of a caseworker and keeping some faith: “Keep fighting for your disability. You may be able to go on disability through your job, depending on how long you have been there. God will work everything out for your good. Just believe that. A caseworker is also great to help you through the red tape.”
It is also important to acknowledge that there are aspects of the future that you cannot manage or predict. Taking MM one day at a time, maintaining some normalcy, and letting go of what you can’t control or change can reduce anxiety and have a calming effect on your mood.
Connecting with people you trust can have a positive impact on your outlook. Friends, family, and caregivers can be a source of great support if you communicate your needs openly and honestly.
This support can be a physical relief, and socializing can help combat the isolation that might set in from dealing with your diagnosis. Having company during treatments can help make it a more positive experience (but don’t shy away from maintaining boundaries around visitations).
A positive outlook can be contagious. Look to support groups for inspiration. Hearing incredible stories from other people living with MM who have overcome obstacles, gone into remission, or beaten the odds can be extremely uplifting.
MyMyelomaTeam is a great resource when you need inspiration and support. With over 13,000 members from around the world, this social network connects those with myeloma and helps them live better with their diagnosis.
Comment below if you have found ways to create a positive outlook with myeloma, or share your story by posting on MyMyelomaTeam.