How your myeloma is managed will depend on whether the myeloma is getting worse and the degree to which it has affected your body.
Up until the last few years, the most commonly used treatments for myeloma were different kinds of chemotherapy, steroids, high-dose therapy and stem cell transplantation. Recently, however, newer treatments have been introduced into the range of drugs available.These include thalidomide and bortezomib (VELCADE®) and an analogue of thalidomide called lenalidomide (REVLIMID®), which should be available soon.
There are also a number of supportive treatments to help treat the symptoms and complications that myeloma can cause. These include a group of drugs called bisphosphonates used to treat bone disease and bone pain. If you have some kidney impairment, you may also receive erythropoietin for anaemia.
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.
The next few chapters look at some important points in making treatment decisions and provide a brief overview of the range of treatments available to treat both the underlying problem and the complications and symptoms due to myeloma.
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 are often quite different. For this reason, being involved in deciding which treatment is right for you is very important.
You may prefer just to follow the advice of your doctor or to take a more active role in the decision-making process. Your doctor should be able to adapt his or her approach accordingly to suit you.
Generally, the best treatment for you will take account of:
* Your general health (for example, your kidney function)
* Your age (for example, it may affect whether high-dose therapy and stem cell transplantation are possible)
* Your personal circumstances and lifestyle
* Your priorities and preferences
* The nature of your disease
* Any previous treatments
* Level of complications
* Results and response to any previous treatment 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 start 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. Information is available from doctors, nurses, other patients, the Internet, the Myeloma Foundation of Australia and other support organizations such as the Leukaemia Foundation and the various state Cancer Councils.The contact details of these organizations can be found near the end of this guide.
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 his / her 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 at another hospital.
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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 evidence that these alternative approaches work, although very occasionally patients report that by using these techniques they have lived with the disease for many years 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 doctor 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 many supportive measures available, as outlined earlier, 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.
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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.
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 listed earlier, 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.
What Treatments Are Available?
You can think of the treatment and management of myeloma as being in
three categories. These are:
- Active monitoring
- Treatments to control the myeloma itself
- Treatments for the symptoms and complications caused by the myeloma (discussed in a later section)
There is some overlap between these categories, since any treatment that controls your myeloma will have the added benefit of reducing the complications and symptoms you experience.
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