Life after treatment

For most people, the myeloma experience doesn’t end on the last day of treatment. Life after myeloma treatment can present its own challenges. You may have mixed feelings when treatment ends, and worry that every ache and pain means the myeloma is coming back.

Some people say that they feel pressure to return to “normal life”. It is important to allow yourself time to adjust to the physical and emotional changes, and establish a new daily routine at your own pace. Your family and friends may also need time to adjust.

Cancer Council 13 11 20 can help you connect with other people who have myeloma, and provide you with information about the emotional and practical aspects of living well after myeloma treatment.

For more on this, see Living well after cancer.

Learn more about:

• Follow-up appointments
• Dealing with feelings of sadness
• Looking after yourself
• What if the myeloma returns?

Follow-up appointments

You will need regular check-ups, even if you don’t have any treatment for myeloma. Blood tests, urine tests, and bone marrow biopsies will be used to check your health. Sometimes x-rays and scans such as PET-CT or MRI may also be used. Your doctor may check the levels of antibodies and proteins in the blood and urine.

This is a good chance to discuss how you’re feeling and mention any new symptoms or concerns you may have. When a follow-up appointment or test is approaching, many people find that they think more about the myeloma and may feel anxious. Talk to your treatment team or call Cancer Council 13 11 20 if you are finding it hard to manage this anxiety.

Check-ups will become less frequent if your condition has stabilised or you have no further problems. Between follow-up appointments, let your doctor know immediately of any symptoms or health problems.

I’ve had many appointments with my doctors, mostly to manage pain caused by the myeloma. My doctors also monitor my bone lesions.

Sam

Dealing with feelings of sadness

If you have continued feelings of sadness, have trouble getting up in the morning or have lost motivation to do things that previously gave you pleasure, you may be experiencing depression. This is quite common among people who have myeloma.

Talk to your GP, because counselling or medication – even for a short time – may help. Some people can get a Medicare rebate for sessions with a psychologist. Cancer Council may also run a counselling program in your area.

For information about coping with depression and anxiety, call Beyond Blue on 1300 22 46 36. For 24-hour crisis support, call Lifeline 13 11 14.

Looking after yourself

Myeloma can cause physical and emotional strain, so it’s important to look after your wellbeing. Cancer Council has free booklets and programs to help you during and after treatment.

Call 13 11 20 to find out more, or see Managing cancer side effects, Exercise after a cancer diagnosis, Complementary therapies, Emotions and cancer, Nutrition and cancer, Sexuality, intimacy and cancer, Fertility and cancer, and Living well after cancer.

What if the myeloma returns?

For many people, myeloma does come back after treatment, which is known as disease progression or relapse. This is why it’s important to have regular check-ups.

You and your doctor will need to discuss what treatment is needed to try to regain control of the disease.

While options for managing disease progression may have been considered in the initial treatment plan, many doctors like to discuss all the options again. This is because the risks and benefits of treatment are not as clear in people whose myeloma has relapsed. The disease characteristics and how you feel about treatment may have changed.

In some people, the original treatment can be repeated successfully, especially if the initial response to the treatment was good. In other people, the myeloma may not respond to the treatment that was used previously. This is called resistant or refractory disease.

Treatment options for resistant disease may include:

• taking a different combination of drugs
• treatment with a different class of drugs
• having another stem cell transplant
• participating in a clinical trial to access new drugs being developed and tested, such as CAR T-cell immunotherapy.