When myeloma returns

Learning that your myeloma has relapsed or has become refractory to treatment is an understandably challenging and emotional time. You may be experiencing a whole range of thoughts and feelings – disappointment, anger and sadness – but perhaps feeling hopeful about starting active treatment to give you more control over the disease.

What is relapsed myeloma?

Myeloma is a relapsing-remitting cancer. This means it continues to come back (relapse), and once treated, can be brought under control again (go into remission or plateau). This makes myeloma different from many other cancers.  

Terms to help you understand relapsed myeloma

• Complete remission is when your myeloma can no longer be detected on standard tests of your blood, urine (wee) and bone marrow.
• A plateau, also called stable disease, is when your myeloma is under control and your symptoms have improved or gone away, but small amounts of myeloma can still be detected.
• Relapse is when your myeloma returns and becomes active again after a period of remission. This may show up in blood, urine and/or bone marrow tests. You may also start to experience symptoms such as bone pain, fatigue, or recurrent infections.

Understanding the relapse and remission cycle in myeloma

Understanding how myeloma behaves over time can help you feel more confident about your treatment plan. Relapse and remission are expected parts of living with myeloma.

It can be helpful to become familiar with myeloma’s relapse and remission cycle, which you can see in the diagram below.

At my first relapse, my haematologist reassured me he had many tools in the toolbox. With this, I remain hopeful and just take one day at a time and enjoy my life as best I can.

– William, New South Wales

What is refractory myeloma?

Refractory myeloma is another way of saying that your myeloma has stopped responding to treatment.

There are three main types of refractory myeloma:

Type of refractory myeloma	Response to treatment
Primary refractory	Myeloma responds very little to the chosen treatment, or not at all.
Refractory	Myeloma progresses during treatment, or soon after the last dose of treatment.
Relapsed and refractory	The treatment works for some time, and then stops working.

A lot of information about relapsed myeloma is also relevant to refractory myeloma. If you have been told your myeloma has become refractory to treatment, much of the information on this page will apply to you as well.

Why does relapse happen?

In simple terms, relapse happens because some myeloma cells can survive treatment.

Myeloma begins when damage occurs to the DNA (chromosomes) of developing plasma cells, causing them to transform into cancerous myeloma cells. These myeloma cells multiply faster than the healthy plasma cells and can vary in their genetic makeup, making slightly different versions of themselves. These different versions of myeloma cells are called subclones.

Each time your myeloma relapses, there will usually be one or more dominant subclones that are the most active. The dominant subclones are responsible for causing your myeloma symptoms. We can detect them in the bone marrow.

Myeloma treatment can be very effective at controlling the dominant subclones. However, some of the other, non-dominant subclones may be resistant to treatment. These cells can stay quiet for months or years, but eventually become active again, leading to relapse.

When your myeloma becomes active again, it may be caused by the same dominant subclones that were detected at diagnosis – or it may be a different subclone that has become dominant or detectable. This is why it is possible for myeloma to change the way it behaves over time.

There is currently no way of predicting when myeloma will come back, but it helps to know that periods of response or stable disease can last from months to many years.

The diagram below can help you picture different myeloma subclones, and how the dominant subclones causing your relapse can change over time.

How will I know if I am relapsing?

Your haematologist will monitor you with regular blood tests and check-ups. In most cases, a relapse is found through these tests before you notice any symptoms.

Your haematologist will look for:

• an increase in your paraprotein or free light chain levels
• changes in your blood counts, kidney function, or calcium levels
• new or increased symptoms such as:
  • bone pain
  • extreme fatigue
  • shortness of breath
  • recurrent infections
  • bruising or bleeding.

Having your tests and investigations at the times recommended by your haematologist will help you to best monitor and manage your myeloma.

It is also extremely important to keep communicating with your haematologist, and to report any new symptoms so that active myeloma and relapses can be detected as early as possible.

To learn more about the different types of myeloma and how they are monitored, read our Understanding paraprotein in myeloma infosheet.

“I experienced bone pain and a low blood count when I was diagnosed, but when I relapsed the only sign was in my bloods. I was happy that we were able to treat it early and I felt well and had no symptoms.”

– Alfonso, Queensland

Making treatment choices

When your myeloma relapses or becomes refractory, your haematologist will organise further tests, such as blood tests, imaging, or a bone marrow biopsy. These tests help your treating team develop a new treatment plan and work out a new baseline to monitor your myeloma from now on.

Sometimes, a treatment can be used again if you had a strong initial response to it. However, if your myeloma has become refractory and is no longer responding to your current treatment, your treating team will usually recommend changing to a different class of medicine or a different combination of medicines to overcome this resistance. 

Factors to consider with your haematologist

Choosing the next step in your treatment is a shared decision. You and your haematologist will consider:

• your disease status – whether this is your first or a later relapse, and the length of your previous remission
• your clinical profile – your general health, age, kidney function, and existing side effects like peripheral neuropathy
• your lifestyle and logistics – how the treatment is given (oral, injection, or infusion) and how often and your travel distance
• treatment access and clinical trials – the availability of subsidised treatments on the Australian Pharmaceutical Benefits Scheme (PBS), and your eligibility for clinical trials.

Read more about the different treatments for myeloma on our Types of treatment page.

Is treatment always needed straight away?

Because myeloma can sometimes progress very slowly, with periods of remission or stable disease lasting from months to years, you may not need to start a new treatment straight away. This is often called a ‘watch and wait’ or ‘active monitoring’ approach.

Your haematologist will closely monitor your bloodwork and markers (paraprotein or light chains) to work out when a change in results needs an active change in treatment.

Compared to my initial diagnosis, there were more considerations that my doctor and I workshopped together to make a decision around my next treatment phase.

– Lilian, NSW.

Getting the support you need

Your treating team and your general practitioner (GP) understand that this is a difficult time and are there to support you. They can set up a Mental Health Plan and refer you to someone to talk to, like a psychologist or counsellor.

This can help you to talk about how you feel, work through your emotions, and learn about coping strategies and relaxation tools to help you feel more at ease.

It can also be helpful to remember the people, practices and tools that helped you when you were first diagnosed and use these to help again.

Myeloma Australia can help provide information and support at any time through our Telephone Support Line, information and support groups, seminars, and social media platforms.

It can be especially helpful to connect with the myeloma community at a time when things are changing, and you have decisions to make. Remember that you don’t need to go through this alone.

I am a regular attendee at my local Myeloma Australia support group. When I relapsed, the other members were a great source of support for me and my wife. A few of them had also experienced relapse and knew what I was going through. Sometimes it’s hard to explain to our other friends, but this group just gets it. My wife comes along and connects with the other partners and support people in the group, which really helps her as well.

– Jai, Northern Territory