Myeloma - Initial Treatment

How long does initial treatment last?

Treatment schedules will vary between patients and will depend on a number of factors including what treatment you are on, how you respond, what and how severe any side-effects are that you have.

Initial treatment is likely to last somewhere between four and six months but possibly up to 12 months, especially if high-dose therapy and stem cell transplantation is involved.

Each course of treatment is given in cycles, i.e. treatment over a few days or weeks, followed by several days or weeks without treatment before the next dose is given. This enables the healthy cells time to recover between treatments.

What happens if I forget to take a tablet when I am supposed to?

If you have forgotten to take your treatment, you should take it at the next prescribed time. You should under no circumstances take a double dose as this may be harmful. You should also let your doctor know what has happened.

Who do I report side-effects of treatment to?

All treatments have the potential to cause side-effects. These can occur at the start of treatment, when doses are changed or even shortly after the treatment has stopped.

The side-effects of treatment vary considerably from patient to patient and may be mild or more serious. As side-effects can usually be prevented, treated or managed, it is very important to report them promptly to your doctor/nurse. Prevention or early management of side-effects will help to minimise the potential consequences of treatment-related side-effects.

If, out of hours, you are unable to contact your doctor/nurse and depending on the severity of your side-effects, you can call NHS Direct on 0845 4647 (England, Wales and Northern Ireland) or NHS24 on 08454 24 24 24 (Scotland).

Why has my treatment been stopped temporarily?

Sometimes stopping treatment temporarily is the best way to manage a particular side-effect. It enables your body to recover from the treatment and in this way resolve the side-effect.

The length of time it takes for this to happen after treatment has stopped will vary from patient to patient but usually is no longer than a month. Despite not receiving treatment for your myeloma, it is unlikely that your myeloma will become active again during this time. If you do have any concerns, speak to your doctor.

What can be done after initial treatment to keep the myeloma away longer?

At present, there is no standard approach to continue treatment once initial treatment has been completed. However, both consolidation and maintenance treatment are being investigated to determine if further treatment can keep the myeloma in remission for as long as possible.

Consolidation treatment usually involves a standard dose of a different treatment given over days or weeks to increase the depth of response to initial treatment. On the other hand, maintenance treatment is given over a much longer period of time at a lower dose to prolong the response to initial treatment. Maintenance treatment can be the same or different to initial treatment.

Treatments such as interferon, thalidomide, Velcade and Revlimid have or are being tested as consolidation and/or maintenance treatments. Currently, there is still no clear indication which, if any, treatment given in these settings is of benefit.

What is the difference between remission and plateau?

Remission is the term used to refer to the period after treatment when there are still a small number of myeloma cells remaining in your body, but they are undetectable and do not cause symptoms.

Plateau is the term used to describe the period during treatment when the myeloma enters a stable phase and shows no sign of progressing or indeed of reducing the level of myeloma any further with continued treatment. At this point, treatment may be stopped as evidence suggests that there is no further benefit of treatment.

Can I still work when I am on treatment?

This very much depends on the type of work you do, what treatment you are receiving and importantly how well you are feeling in yourself.

If your treatment does not affect your day-to day life then continuing to work is possible. You may want to explain to your employer that you are receiving treatment and perhaps negotiate working a reduced number of hours or work from home.

If you are not able to work as a result of your myeloma and this is putting a strain on your finances, you may be entitled to claim state benefit.

How do I know the treatment I am on is the best treatment for me?

The initial choice of treatment will depend on a number of factors including your overall health, age and the extent of your myeloma.

The treatment offered to you will be the current standard treatment which based on clinical evidence, is considered to be the best available treatment for your individual circumstance.

You may also be eligible to enter a clinical study, in which case, if you choose to take part, you will receive your initial treatment as part of that study. Your doctor will let you know which studies are suitable for you.

A number of tests will be carried out before, during and after treatment to find out how well you respond. These normally include blood and urine tests and occasionally bone marrow biopsies. Signs that you are responding to treatment include:

• A drop in paraprotein/free light chain levels
• A reduction in the number of myeloma cells in your bone marrow
• A relief of symptoms and complications
• An improvement in your overall general health

What happens if I don’t want to have high-dose therapy and a stem cell transplant?

High-dose therapy and stem cell transplantation is not for everyone. Even if you are a suitable candidate, you do not have to have this treatment if you do not wish to.

However, before making any decision, you should find out as much about the treatment, its potential advantages and disadvantages, risks and possible side-effects. It may also help to speak to another patient who has had a stem cell transplant before. 

If you decide that this treatment is not right for you at this stage, your doctor will discuss all other options that are available to you. You may have the option to still collect and store your stem cells if you think you may consider a transplant in the near future.

What happens if my treatment doesn’t work?

The aim of treatment is to reduce the number of myeloma cells and therefore reduce the paraprotein/free light chain levels. A response to treatment usually corresponds to an improvement in quality of life and a decrease in symptoms and complications.

Usually, your doctor will measure your response to treatment according to a defined set of criteria based on the extent to which the myeloma cells and paraprotein/free light chain levels have been reduced.

However, not everyone responds well to the same treatment and if you do not achieve the desired response to a particular treatment, your doctor will discuss other options available to you. 

In this situation, the majority of patients in the UK would go on to receive Velcade either as still a part of initial treatment with Velcade replacing thalidomide or as the next line (first relapse) of treatment. Alternatively, you may wish to consider entering a clinical study.

What are clinical studies?

Clinical studies are planned investigations in which patients take part. They are designed to test new treatments, new combinations of current treatments or compare different approaches to current treatment. Their purpose is to find out whether or not the new treatment or treatment approach has more benefit than the current treatment approach.

Clinical studies are run according to a strict study plan called a protocol. The protocol must be inspected and approved by various regulatory bodies, including an ethics committee, before the study can start. These processes are in place to protect the rights, dignity and safety of those taking part.

Not all patients will be suitable for a clinical study. Doctors and researchers only ask patients who are suitable for the treatments being studied, to take part. Each study will have ‘eligibility criteria’– a set of requirements for the study that patients must meet. These criteria are very important and help to protect the safety of patients to ensure they are not exposed to any unnecessary risks and to ensure that the relevant population of patients take part so that the clinical questions can be answered under the appropriate setting. 

The information collected from the study will be used to help determine which treatments are the most effective and so help to improve future treatments for myeloma.

Should I take part in a clinical study?

Before making a decision to take part in a clinical study, it is important that you understand what the study involves and what the potential advantages and disadvantages of taking part in the study are. Information specifically related to the study can be obtained from your doctor/nurse.

Possible advantages include the fact that:

• You will be given a new treatment or approach which may not otherwise be available
• You will be closely monitored throughout the study
• You will be helping to improve treatments for future myeloma patients

Possible disadvantages include the fact that:

• The new treatment or approach may not be better than the current standard
• The new treatment may cause unexpected side-effects
• The new treatment may not work for you

You will be given the opportunity and time to discuss every aspect of the study in detail before making a decision. Each patient is different and you will have your own priorities, concerns and lifestyle – all of which can play a significant part in your decision.

Taking part in a clinical study is entirely voluntary. You do not have to take part and you do not have to give a reason. Your treatment and care will not be affected in any way if you decide not to take part and you will still be given the current standard treatment most suitable for you.

What if I don’t want conventional treatment?

Some patients may not want to have any treatment for their myeloma.

If you feel that you do not want to have any treatment at all, it is important that you discuss this with your doctor first before making a decision. Your doctor may still be able to manage any symptoms and complications to ensure you can maintain the best possible quality of life for as long as possible.

If you do not wish to have any conventional anti-myeloma treatment but would like to try an alternative approach, it is also important that you discuss this with your doctor first.

Is there are difference between alternative and complementary therapies?

Yes, there is. 

Complementary therapies are used in addition to conventional treatment and may include dietary and herbal supplements, massage, acupuncture, aromatherapy and relaxation techniques. For example, many myeloma patients use complementary therapies to reduce or relieve pain. 

If you would like to include complementary therapies in your overall treatment, your doctor will be able to discuss which may be suitable for you.

Alternative therapies are used instead of conventional treatment. This may include for example, following a specific diet or using herbal remedies in place of conventional anti-myeloma treatment. 

There is no evidence to suggest that alternative therapy can help to treat myeloma patients. If you wish to try alternative therapies, you should discuss this with your doctor. It is important that you understand the potential risks of using it instead of conventional treatment before making your decision.

Can I drink alcohol whilst on treatment?

Many of the drugs used to treat myeloma can interact with alcohol so you should ask your doctor if any of the treatments you are on are likely to interact with alcohol. If you do intend to drink alcohol whilst on treatment, you should be vigilant for any effects that may not be normal.

It is important to note that the side-effects of treatments can vary from patient to patient and any you have should be reported to your doctor as soon as possible.

Can I keep driving whilst on treatment?

Some treatments can make you feel drowsy and may interfere with your ability to drive. Your doctor will inform you if your prescribed treatment can have this effect and it may be possible to change your treatment schedule so that it does not affect your ability to drive.

It is important to note that the side-effects of treatments can vary from patient to patient and any you have should be reported to your doctor as soon as possible.

Why does the myeloma always come back?

While myeloma is very treatable, at present it is not curable. Therefore, the myeloma will return at some point after a period of successful treatment. When this happens, it is known as a relapse.

A relapse occurs because the current treatments for myeloma cannot get rid of it completely and permanently. There will come a time when the myeloma becomes active again; this may happen after months or years, but it is important that you are monitored regularly so that any signs of a relapse are managed and treated as early as possible.

Where can I get more information about specific treatments?

You can find more information about specific treatments on this website, as well as and a range of Infoguides and Infosheets about specific treatments within the Myeloma UK publications section on this website.  For printed copies call the Myeloma Infoline on 0800 980 3332.

You should also be given patient information leaflets from your hospital for all of the drugs you have been prescribed. If you are not, ask your doctor, nurse or pharmacist for them.