How your myeloma is managed will depend on whether the myeloma is getting worse and the degree to which it has affected your body.
Historically, treatments for myeloma used a combination of chemotherapy drugs, steroids and high-dose therapy & stem cell transplantation. Since the year 2000 a range of newer therapies have become available. These are not traditional chemotherapy but are classified as targeted or immunotherapy. Research is ongoing and many new drugs in this class are under development with a few new ones coming available each year.
As of January 2017 the following drugs are available in Australia either through Medicare on the Pharmaceutical Benefits Scheme (PBS), on compassionate access through the manufacturer or on clinical trial:
|Myeloma Drug Guide|
|Drug Class||Name||Abbreviations||Brand Name||TGA Approved||On PBS|
|Proteasome Inhibitors||Bortezomib||btz, bor,V||Velcade||Yes||Yes|
|Carfilzomib||cz, car, K||Kyprolis||No||No*|
|Alkylating Agents||Melphalan||mel, M||Alkeran||Yes||Yes|
|Cyclophosphamide||CTX, Cy, C||Cytoxan||Yes||Yes|
|Corticosteroids||Dexamethasone||D, d, dex, DXM||Decadron||Yes||Yes|
|Histone Deacetylase Inhibitors||Panobinostat||Farydak||Yes||No|
* Carfilzomib is under application for PBS section 100 approval, compassionate access availability has recently closed
Before embarking on treatment, however, patients and doctors need to make important decisions about what treatment is best or most appropriate and when to receive it.
Choosing treatment for myeloma is not a simple decision as no one treatment has been identified as being the best, and all patients are different. The advantages, disadvantages and side-effects arising from available treatments vary from patient to patient. Being involved in deciding which treatment is right for you is very important to understand why it is given and what effect you may experience.
Generally, the best treatment for you will take account of:
- Your general health (e.g. pre-existing conditions, kidney function, heart function)
- Your age (e.g. it may affect whether high-dose therapy and stem cell transplantation are possible)
- Your personal circumstances and lifestyle, eg mobility, distance to travel, level of support
- Your priorities and preferences
- The nature of your disease
- Any previous treatments
- Level of complications
- Results and response to any previous treatments received
Making an informed decision is important and you should take as much time as you need to make one. However, in some situations there may be an urgent need to stat treatment, for example, if you have significant kidney damage.
To help you understand more about your myeloma and the treatment options available, try to collect as much information as you feel you need from reputable sources. Information is available from doctors, nurses, other patients, the internet, Myeloma Australia and other support organisations such as the Leukaemia Foundation and the Cancer Council.
Listing the pros and cons of each option is a good way to help you decide what the best treatment for you is. Talking things over with your family, friends or another patient can help clarify your thoughts.
Your decision should take into account your personal priorities, your lifestyle and how you feel about the pros and cons of the treatment options that are available and their potential side-effects. The important thing is that you and your doctor agree together on the treatment you will receive.
The way cancer services are currently organised in Australia means that the hospital where you are being treated should involve a range of healthcare professionals working together as a team known as a multidisciplinary team. Your treatment is likely to have been discussed by the team, although often only one doctor (usually the consultant haematologist) will look after you.
Because myeloma is not common, and choosing the right treatment is sometimes as challenging for doctors as it is for patients, you may feel that you want a second opinion to be sure that the diagnosis is correct, that the treatment plan is appropriate for your situation and that all other options have been considered. Doctors are normally happy for you to seek a second opinion and you should not feel that asking for one would offend any of the medical team. Your hospital doctor or general practitioner (GP) may be able to recommend another myeloma specialist for you to see and provide you with a written referral letter outlining your current situation and plan for management.
A second opinion can be obtained through the public health care system, although some people prefer to go privately. A referral letter from your present specialist or GP would be required when attending a second opinion. You can usually call and make an appointment with another doctor by phoning their secretary.
Sometimes people have difficulty in communicating with their doctor and want the chance to talk to another doctor. In this circumstance, you may ask to see a different doctor in the same hospital or to have a second opinion in another hospital.
What if I don’t want any treatment at all?
Some patients feel that they do not want to have any type of toxic treatment and prefer to try an alternative approach such as dietary control, etc. Unfortunately there is no reliable evidence that these alternative approaches work, although there are rare reports of patients using these techniques living with the disease for longer than originally predicted.
It is important to remember that conventional treatments have been well tested in clinical studies and doctors have a clear understanding of how they work. The same cannot be said for alternative approaches. If you choose to use alternative ways of trying to control your disease, it is important to discuss this with your doctors as there are potential risks involved and you may choose to try conventional treatment at a later date. If you choose not to have active treatment for your myeloma there are supportive measures available to help alleviate the symptoms of your disease.
If specialist advice is needed with regard to symptoms such as pain, it may be helpful to be referred to a palliative care specialist, who will be able to provide expertise in symptom control and supportive care.
Indication for starting treatment
The decision to start or not to start treatment is an important one. Not everyone diagnosed with myeloma will need treatment to control his or her myeloma immediately. Some myelomas lie quiet for years and these patients are monitored regularly for signs of active disease developing.
Because currently available treatment is not curative and has side-effects it is usual to wait until the myeloma is actively causing problems before starting treatment. Results from the tests and investigations, along with other individual factors, will help determine when treatment should begin what that treatment should be and provide a baseline against which response to treatment and disease progression can be measured.
How is myeloma managed?
You can think of the management and treatment of myeloma as being in three categories:
- Active monitoring
- Treatment to control the myeloma itself
- Treatments for the symptoms and complications caused by the myeloma
There is overlap between categories, since treatment that controls your myeloma will reduce the complications and symptoms you experience from the disease, but will need the treatment side effects managed.
What can be done to lessen the effects of the myeloma and its treatment on my body?
This is called supportive therapy and is given to treat damage caused by the disease or try and prevent some side effects. Some of the common drugs given are:
- Bisphosphonates are used to treat myeloma bone disease and bone pain
- Antibiotics, anti-virals, anti-fungals may be given to reduce the chance of a severe infection. These are usually given when anti-myeloma treatment is being taken or if the immune system is very low.
- Proton pump inhibitors (PPIs), block the production of acid by the stomach and are given to protect the stomach from ulcers when steroids are given
- Analgesia for pain, commonly from bone disease or peripheral neuropathy
- Immunoglobulins for low functioning immune system
- Anti-diabetic medication (oral hypoglycaemics) or insulin if steroid therapy raises the blood sugar level
- Blood thinners (anticoagulants) if at increased risk of getting a blood clot in the leg (DVT) or lung (pulmonary embolis (PE))
- White cell growth factors (G-CSF) if infection fighting white cells are lowered
- Erythropoietin for anaemia caused by poor kidney function