RELAPSED/REFRACTORY PATIENTS:

YOUR TOP QUESTIONS ANSWERED

Empowering Relapsed/Refractory Patients

Over the years, the Multiple Myeloma Research Foundation (MMRF) has collected questions from patients like you, who have relapsed or are refractory to treatment. Here you'll find answers to the most frequently asked questions.

Click each underlined heading to view each section or view all.

What are my treatment options?
Is high-dose chemotherapy and stem cell transplantation an option?
Do I need a second opinion?
What new drugs are being developed?
How do I know if a clinical trial is right for me?
What are the types of clinical trials?
How do I find the right clinical trial?
Where can I find help paying for treatment?

What are my treatment options?

Fortunately, there are many treatment options for patients with relapsed or refractory myeloma. Any of the treatments used in initial therapy (e.g., Revlimid, Thalomid, Velcade) may be potential treatment options. Even if you have been on a treatment before, it may work again. Alternatively, a new combination of drugs may be effective (e.g., Velcade plus Doxil or Velcade plus Revlimid).

Click here for more information about treatment.

Use the links below to find out more about specific treatments.

Participation in a clinical trial is also an option. Participating in a clinical trial offers access to the very latest advances in treatment. Many new drugs are being studied in combination with standard therapies. Therefore, you should always talk to your doctor about what clinical trials may be appropriate.

Click here to find a clinical trial or call 1-866-603-MMCT (6628) to speak with a Clinical Trial Specialist

Is high-dose chemotherapy and stem cell transplantation an option?

Patients who respond or obtain stable disease after treatment for relapsed or refractory myeloma may be eligible to undergo high-dose chemotherapy and stem cell transplantation. In addition, a second stem cell transplant is sometimes performed in patients who have relapsed after an initial stem cell transplant.

In order to be a candidate for stem cell transplant, you should be in generally good health, although some patients with kidney failure have been able to undergo transplant using lower doses of chemotherapy. However, if you have previously received certain types of myeloma treatment (such as melphalan or radiation to the pelvic area) you may not be able to undergo transplantation.

Click here for more information high-dose chemotherapy and stem cell transplantation.

Do I need a second opinion?

It is recommended that people with relapsed or refractory multiple myeloma seek a second opinion from a doctor with expertise in treating multiple myeloma before beginning a new treatment regimen. In fact, most doctors will encourage patients to see more than one doctor before proceeding with treatment. Doctors at larger cancer centers in particular may have more knowledge about treating multiple myeloma and access to more clinical trials specifically for patients with relapsed or refractory disease.

Click here to visit our sister organization, the Multiple Myeloma Research Consortium (MMRC), for more information about cancer centers that specialize in multiple myeloma. Click here to visit the National Cancer Institute's (NCI) designated cancer centers. Or, click here to visit the American Society of Hematology's "Find a Hematologist" to locate doctors who specialize in treating blood cancers.

What new drugs are being developed?

More than 30 new drugs are at various stages of development for multiple myeloma. Two drugs that are furthest along in their development for myeloma are Zolinza, which is currently FDA approved for another cancer (cutaneous T-cell lymphoma), and Tanespimycin.

Zolinza (also known as vorinostat or SAHA or MK0683) is a histone deacetylase (HDAC) that is taken orally. Early studies have shown promising activity in myeloma with the combination of Zolinza and either Velcade or Revlimid. Additional studies, including a major international study evaluating Zolinza plus Velcade, are investigating Zolinza in combination with standard therapies (i.e. Velcade, Revlimid, and Doxil). Click here for more information about Zolinza.

Tanespimycin (also known as KOS-953 or 17-AAG) is in a class of agents known as heat shock protein (HSP) inhibitors. It is given intravenously (by needle). Early studies have shown that the combination of Tanespimycin and Velcade has promising activity in myeloma. A major study evaluating this combination has recently been completed; the results from this study are not yet available. Click here for more information about Tanespimycin.

How do I know if a clinical trial is right for me?

Deciding to participate in a clinical trial is an important decision. For many people with multiple myeloma, a clinical trial may be the best treatment option available. Other people with multiple myeloma may want to help contribute to the development of better treatment options in the future. Understanding more about clinical trials will help you make the right decisions. Click here to learn more about multiple myeloma clinical trials, or talk with your doctor or a Clinical Trials specialist at 1-866-603-MMCT (6628) about any questions you may have.

What are the types of clinical trials?

Clinical trials are usually classified into one of three phases:

The goal of a phase I clinical trial is to prove that a new drug or treatment may also be given safely to people. Data is collected on how a new drug should be given (by mouth, injected into the blood, or injected into the muscle), how often, and what dose is safe. People who participate in a phase I clinical trials are often the first to receive a new treatment.

The goal of a phase II clinical trial is to learn more detailed information about the safety of the treatment and to begin studying how well the drug works.

The goal of a phase III clinical trial is to study how a new treatment compared with the current standard of care. In phase III trials, data are collected from large numbers of patients to determine whether the new treatment is more effective and possibly less toxic than the current standard treatment. In most phase III clinical trials, patients are randomly selected to receive either the new treatment being studied in the clinical trials or the current standard treatment.

Click here for more information about clinical trials.

How do I find the right clinical trial?

With so many clinical trials for multiple myeloma, it is very important to choose the right one. Most people have several factors to consider, including the stage of the disease, the treatments under study, and considerations such as the location of the trials and travel costs. Before making your decision, talk with Clinical Trials specialist at 1-866-603-MMCT (6628) about clinical trials that may be best for you.

Where can I find help paying for treatment?

The cost of treating multiple myeloma can be high and may include unexpected out-of-pocket expenses. People with multiple myeloma may want to seek financial help soon after being diagnosed. Most hospitals and clinics have social workers who can help patients and their families manage financial concerns and provide access to community resources. Your doctor or oncology nurse may also be able to provide a referral to resources available in your community. Or, click here for a list of resources to assist with treatment costs.