If you've been recently diagnosed with multiple myeloma, you probably have many thoughts running through your head and you may feel unable to think clearly. Your doctor will understand this. You should feel free to ask questions about any concerns you may have. Be sure to take a pen and pad with you, as you probably won't remember all the answers. If the doctor uses words you don't understand, ask for an explanation.
You have the right to have your concerns answered. If your doctor does not have time to give you all the information you need, the nursing staff in his office may be able to answer your questions. You may also want to ask if there is any patient literature available.
If possible, bring a spouse, friend, or relative with you. They can take notes from your conversation with the doctor. You may even want to tape record your discussion so you can replay the answers to your questions at a later time. Of course, you must first ask your doctor's permission to do this.
Here is a list of questions you may want to ask. These are only suggestions; you should feel free to replace any or all with questions of your own.
Your Multiple Myeloma
- Do you typically treat patients with my diagnosis?
- What classification and stage is my multiple myeloma?
- Is there anything unique about my cancer that makes my prognosis better or worse?
- Should I get a second opinion?
- What symptoms commonly occur with multiple myeloma? When can I expect them to develop or get worse?
Tests
- What types of lab tests will I need? How often will I need them?
- Will I need x-rays and scans?
- Can you explain the results of my blood and urine tests?
- Are there tests for the genetic makeup of my cancer?
- Will I benefit from having my cancer evaluated for its genetic makeup?
- How frequently will I get the tests?
Treatment
What is the goal of treatment: to cure my multiple myeloma or keep it under control?
- What is the recommended treatment for my stage of cancer?
- Can I enroll in a clinical trial? Would I receive better medications?
- If I don’t have insurance coverage, what are my options?
- Which center would be able to provide the best treatment for my myeloma?
- When should I start treatment?
- If I have treatment, could my cancer return?
- If the cancer comes back, can it again be treated successfully?
Stage 1
- Does my cancer require treatment at this point?
- How will we determine if and when I should begin treatment? How will you monitor me?
- Is there anything we can do to prevent my disease from progressing?
- Are there signs and symptoms I can watch for that might tell me my cancer is progressing? What are they?
Stages 2 and 3
- Given my age, health, and preferences, what do you see as the best treatment options for my situation?
- Am I a candidate for stem cell transplantation? Why or why not?
Relapsed/Refractory Disease
- If my disease comes back or does not respond to treatment, what other treatments would you recommend?
- Will the results of the treatment be worth the side effects I may get?
- Can I choose less aggressive treatment just to keep me comfortable?
- What will happen if I decide not to have further treatment?
Stem Cell Transplantation
- Why am I a good candidate for stem cell transplant?
- Do I need to find a donor to give me healthy stem cells?
- What do I need to do to prepare for the procedure? Will this involve time in the hospital?
- What does the actual transplant involve? Does it hurt?
- How much time do I need to spend in the hospital afterwards?
- How will I feel after the transplant?
- What are the risks?
- Can I have visitors during or after the transplant?
- When will I know if it was successful?
Chemotherapy and Other Anticancer Medications
- What are the names of the drugs that will be used?
- Why are you recommending those particular drugs?
- Is there evidence that they are more effective than other chemotherapy and anticancer drugs?
- How many treatments will I need?
- How will the treatments be given?
- Can I go home afterwards?
- What will I feel like after my treatments?
- Will I be able to work? Will I be able to take care of my spouse, children, or other family members?
- What are the possible side effects of these treatments?
- Will my hair fall out? Will I be nauseous? Will I be exhausted? Will I get mouth sores?
- Is there anything I can do to lessen the side effects?
- Are there any additional medications I can take that would help with the side effects?
- Can I eat all kinds of foods? Can I drink alcohol?
- Can the cancer spread even though I am on chemotherapy or other anticancer medication?
- Will the treatments affect my sex life?
Radiation
- What areas of my body will be treated with radiation?
- How many treatments will I have?
- How will I feel after the treatments?
- Will I be able to work? Will I be able to take care of my spouse, children, or other family members?
- What are the side effects of radiation?
- Is there anything I can do to lessen the side effects?
- Can I eat or drink anything I want during the weeks I have radiation? Can I drink alcohol?
- Will this affect my sex life?
Coping with Symptoms
- What symptoms are likely to be caused by the myeloma?
- How serious are they likely to be?
- When would they require treatment?
- What treatments are available for symptoms? Would I need to come to the hospital or medical office for them, or can they be taken at home?
- Do these treatments cause side effects, and if so, what are they?
- When should I call your office about my symptoms?
Protecting Against Infection
- Will the myeloma itself and/or the treatment put me at risk for a low white blood cell count and infection?
- Can I help protect myself against infection right from the start, instead of waiting until problems develop?
- Am I at special risk for infection?
- What are the signs of infection?
- How serious is an infection?
- How long will I be at risk for infection?
- What should I do if I have a fever?
- How are infections treated?
What to Expect After Treatment
- What happens after I complete my treatment?
- How can I best continue to monitor myself for complications related to either my disease or my treatment?
- What kind of lab tests will I need?
- How frequently should I get those lab tests?
- What types of x-rays and scans will I need?
- How often do I need to come in for checkups?
- When will you know if I am cured?
- What happens if my disease comes back?