you can participate in myeloma research

As a myeloma patient, you may be able to make an invaluable contribution to myeloma research and the development of new therapies. Perhaps you can donate marrow for laboratory research, or can volunteer for a clinical trial. Speak with your doctor or your healthcare team.

There are both advantages and disadvantages to participating in clinical trials.

The advantages are:

• You may gain access to a new therapy that is not available outside of the trial. If the agent is effective, you will be among the first patients to benefit.
• You will be monitored even more closely and frequently than you would ordinarily.
• You will be helping other patients, now and in the future.

Among the disadvantages to consider:

• If you receive the new treatment, it may not turn out to be as effective as the existing therapy or there may be unexpected side effects.
• You may need to be tested more frequently than you would ordinarily.

It is important that you understand all potential risks and benefits before you agree to join a clinical trial. People who are asked to participate in a clinical trial must give what is called an informed consent. To do so, the clinical trial coordinator must give you a written document that explains in plain language the study protocol or written plan, as well as all potential risks, benefits and requirements.

If you are considering a clinical trial, don’t be afraid to ask a lot of questions. The more you know about a study, the more informed your decision will be. Some questions you may want to ask include: 

• What is the purpose of this study? 
• Is it a Phase I, Phase II, Phase III or Phase IV study? 
• Has the treatment or therapy been tested before? If so, what were the results? Were there side effects I should know about? 
• Who has reviewed and approved this clinical trial? 
• How long will the study last? How long will I be involved? 
• Who will be in charge of my care? Will I be cared for by my own doctor? 
• Where will my treatment take place? 
• How will my safety be monitored during the study? 
• What sort of treatments, tests or procedures should I expect? How do they compare with what I would receive if I didn’t participate? 
• What are the possible short- and long-term risks, side effects and benefits for me? How do these risks, side effects and benefits compare to those of the usual treatment? 
• If the study requires other medications - either as part of the treatment or for side effects - will they be supplied by the study? If not, will they be covered by my private or public drug plan? 
• How might being in the trial affect my daily life? Is there anything my family should know about the treatment?