Myeloma treatment and side effects

Updated 10 Aug 2017

Myeloma is not usually considered a curable disease, but it is very treatable. The main aims of treatment are to considerably reduce the myeloma, and to bring you into remission for as long as possible with the best quality of life. 

You might not need treatment for myeloma at first – especially if you don’t have any symptoms. Your specialist will tell you when they think you might need to start treatment and discuss the options with you.

Active treatment for myeloma includes a combination of chemotherapy drugs, steroids and biological therapies, and possibly a stem cell transplant. You may also receive radiotherapy.

The treatment you decide on with your healthcare team will depend on your health, your individual condition and your wishes.

Planning myeloma treatment

Patients with asymptomatic or smouldering myeloma may not need treatment straight away but will have regular check-ups instead.

If you have symptomatic myeloma you’ll normally start treatment straight away – depending on a number of factors. Treatment will involve a combination of chemotherapy, steroids, biological therapies and possibly a stem cell transplant.

Find out more information about treatment decisions >

When will I start treatment?

Depending on the results of your tests and whether you have any symptoms when you’re diagnosed, you may not need to start treatment immediately – this is called watch and wait. In this case, you might hear your condition called asymptomatic or smouldering myeloma.

There’s no evidence that starting treatment at this stage will improve your outlook. You can’t start treatment if your consultant doesn’t think you need to. If you don’t agree with them, you can always ask for a second opinion. You can ask for this at any time before or during treatment. This can be arranged either through your current consultant or you GP.

Some people can be anxious about being on watch and wait (not being actively treated). If this is the case for you, try to speak to your healthcare team as they can offer you support and reassurance.

If you’re on watch and wait you’ll have regular check-ups to monitor your condition. These will either be at your GP surgery or in hospital. It’s really important to go to these, as this is when you and your consultant can talk about how you’re feeling and whether you might need to start treatment.

If your consultant thinks it’s important for you to begin your treatment they’ll tell you and explain the options open to you, to help you make a decision.

Treatment

The stages of myeloma treatment

Myeloma is not usually considered a curable disease. Instead, it is a disease which shifts between phases of remission and relapse. These phases of remission, sometimes called ‘plateau phases’ can vary in length of time considerably between patients.

Usually, patients respond well to firstline therapy, and this period tends to be where most patients experience the greatest length of remission.

Unfortunately, patients will almost always relapse after this first period of remission, but when this is the case there will be other treatment options available to you. Treatment following a first relapse is called ‘second-line’ therapy, and the aim of this treatment is to acheive a second remission. This information talks about the standard treatment options available, from first-line through to fourth-line therapy.

First-line therapy: remission induction

There are two stages involved in first-line therapy. The aim of the first phase of treatment is to remove as many of the myeloma cells as possible from your bone marrow. This first stage is known as remission induction or just induction therapy, which involves a combination of chemotherapy, steroids and biological therapies.

Chemotherapy is directly toxic to cancer cells. Steroids are toxic to these cells too, but steroids can also increase the cancer-killing effects of other chemotherapies. Biological therapies work to discourage the future growth of other cancer cells. The exact drug, dose and combination you’ll be offered will depend upon your general health, age, and whether you’ll have a stem cell transplant at a later date.

In general:

  • Older or less fit patients tend to have standard doses
  • Younger or fitter patients tend to have higher doses followed by a stem cell transplant.

Treatment is usually given in cycles – cycles of treatment can last for three to four weeks. You will have time off after your course has finished. One course of treatment can include four to six cycles. Overall, remission induction may last four to six months.

The most common drugs prescribed are listed below. All are taken orally, unless otherwise noted.

Chemotherapy

  • cyclophosphamide
  • melphalan (Alkeran™)
  • bortezomib (Velcade™) (given subcutaneously-injected under the skin).

Biological therapies

  • thalidomide
  • lenalidomide (Revlimid™)
  • pomalidomide (Imnovid™).

Steroids

  • dexamethasone
  • prednisolone.

Other drugs may be suggested, in different combinations. The most common combination used in first-line therapy, especially for younger or fitter patients, is CTD (cyclophosphamide-thalidomide -dexamethasone).

Usually older or less fit patients will be offered CTDa, which stands for cyclophosphamide-thalidomidedexamethasone-attenuated. These are the same drugs used in CTD but using an ‘attenuated’ regimen, which means you have smaller doses. CTDa will not usually be followed by a stem cell transplant.

If you are taking any form of CTD you should be using a barrier method of contraception whilst on treatment. You are also advised not to donate blood or share medication.

The drug thalidomide (in CTD) has been associated with birth defects. So thalidomide, along with similar drugs like lenalidomide and pomalidomide, should not be taken by women trying to get pregnant.

CTD and CTDa aren’t always the first drugs of choice at remission induction stage. For example, patients with free light chain myeloma or patients with kidney problems will usually be offered another drug combination, often including bortezomib and dexamethasone.

First-line therapy: consolidation therapy

If after your initial treatment all the myeloma cells have gone, it’s called a complete response. If you have a complete response you’ll still need further treatment or consolidation therapy. This is because without the consolidation, the myeloma would quickly come back.

Consolidation therapy tends to involve either a stem cell transplant or a further combination of drugs. These consolidation treatment options are explained below:

Stem cell transplant

A stem cell transplant (sometimes called a bone marrow transplant) aims to give patients healthy stem cells, which then produce normal blood cells.

There are two main types of stem cell transplant:

  • Autologous or autograft – this uses the patients’ own stem cells
  • Allogeneic or allograft – this uses donor stem cells and is a higher risk procedure.

People with myeloma typically have autologous transplants, not allogeneic ones. You might also hear an autologous transplant called an auto-SCT. Occasionally allogeneic stem cell transplants might be considered for younger, fitter patients with a particularly aggressive type of myeloma.

With autogolous transplants, once you have a complete response after your initial treatment, stem cells will be collected from your blood using a special machine.

It’s likely that you’ll take melphalan (a chemotherapy drug used to slow the growth of cancer cells) before your stem cells are returned to your body. The melphalan removes any remaining myeloma cells and prepares your bone marrow to receive the stem cells. This is called conditioning.

For more information you can download our booklet: Seven steps: Blood stem cell and bone marrow transplants, or order it in print for free

Drugs to treat the symptoms of myeloma

You may also experience symptoms which are related to the disease, instead of the treatment. The following drugs may be used in this situation:

  • Bisphosphonates to reduce any pain resulting from bone damage.
  • Erythropoietin (EPO) injections to treat anaemia – this will increase your red blood count and stop you feeling tired and breathless.
  • Granulocyte-colony stimulating factor (G-CSF) to trigger the production of white blood cells to protect against infection.
  • Antibiotics to help prevent or treat infections.
  • Painkillers to help relieve bone pain.

Make sure your healthcare team are aware of all your symptoms, so you can get the right help.

Treatment for bone damage

Sometimes myeloma can cause damage to vertebrae, which are the bones making up your spine. You will have already been given bisphosphonate drugs to reduce the pain and increase the strength of the bones. As well as this, you might also need an operation to repair the damaged bones to prevent the condition getting worse.

If you need this operation you’ll be looked after by an orthopaedic surgeon, who’ll explain to you what’s involved.

Supportive care

As well as active treatment of your illness, you may also need care around things like prevention of infection, blood transfusions, mouth care, diet, pain management and dealing with complications of your illness or of your treatment.

Side effects

Possible side effects from your treatment may include:

  • an achy feeling
  • diarrhoea
  • constipation
  • extreme tiredness
  • excess energy (with steroids)
  • alopecia (hair loss)
  • infections
  • anaemia
  • mouth sores
  • mood changes
  • nausea (feeling sick)
  • upset stomach and vomiting
  • neuropathy (loss of feeling or pain in your legs or other parts of your body)
  • thrombosis (blood clots)
  • poor appetite, loss of taste
  • increased appetite (with steroids)
  • weight changes.

You’re unlikely to have all of these side effects, especially as some are linked to specific drugs. If you have any side effects, do tell your healthcare team as they might be able to help with them. For example, you will always be prescribed drugs called anti-emetics which can help with symptoms of nausea and vomiting. Your doctors may also be able to suggest a change in your treatment if any of these side effects become unmanageable.

More information about medicines used to treat myeloma and its symptoms on the Electronic Medicines Compendium >

Relapse

Myeloma patients will almost always experience a relapse.

‘Relapse’ is the term used after a patient has responded well to treatment but the condition has returned later. It is likely that your doctor will suggest the following drug combinations at each stage of your treatment:

Second-line therapy

Usually drugs such as bortezomib and dexamethasone are offered for all patients in second-line therapy.

Third-line therapy

Third-line therapy options offered are typically lenalidonmide and dexamethasone.

Fourth-line therapy

This line of therapy will usually be a choice between: pomalidomide and demamethasone; bendamustine and dexamethasone; or ESHAP (a combination of chemotherapy drugs with a steroid) may sometimes be considered.

Refractory myeloma

If you don’t have a complete response or a very good partial response to your initial treatment this is called refractory myeloma. In this case your consultant might suggest you take part in a clinical trial. Refractory myeloma can occur at any stage in myeloma, but it’s more difficult to treat if this happens in an earlier phase.

If you relapse following a stem cell transplant, but you’ve stayed in remission following this for at least 18 months, then a second autologous transplant (using your own stem cells) may be an option for you. This will not cure the myeloma but it should hopefully lead to another stable and lengthy remission period.

If you don’t want to take part in a trial, your consultant will help you choose the best treatment based on which drugs you’ve already tried, your general condition, and your wishes.

Bortezomib, lenalidomide and pomalidomide are all drugs which may be used in this situation, usually in combination with dexamethasone.

Follow-up

Your follow-up will depend on what type of treatment, if any, you’re having, and how your condition has responded. If your illness has responded well, it may be some time before you need any further treatment. Your consultant will explain how often you’ll come back for follow-up checks. These appointments are really important so do make sure you get to them.

Prognosis / Outlook

Each patient with myeloma will have a different outlook depending on a number of factors.  In most patients, the condition responds well to initial treatment but unfortunately myeloma almost always comes back. However, there are a number of treatment options you can explore.

Every person is different, so your consultant and healthcare team are the best people to ask about your likely outlook (your prognosis).

The amount of time in remission following an own-cell (autologous) transplant varies a lot between patients. This usually averages out after two years, but this length of remission could be shorter or considerably longer than two years.

A small number of patients who receive a donor (allogeneic) transplant can have a long-term survival of more than 15 years, but for most people myeloma is usually considered incurable. Your outlook is individual to you, so do talk to your doctor about your outlook, as he or she will have the fullest picture.

You may find it hard to ask or talk about your prognosis. Sometimes those closest to you might want to know your prognosis even if you don’t. However, your healthcare team aren’t allowed to give this, or any, information to anyone – not even family members – without your permission.

Try to decide early on who you want to know about your condition, then tell your healthcare team – you can change your mind any time.

PIF memberStandard member