I'm told I have Multiple Myeloma. Now what do I do?

1. It is important that you find out what type of MM you have. Press your doctor for this, many times they don't know initially and don't think this is important. You will be able to track the disease with specific tests if you know what type you have. Also, others on the list will be able answer questions specific to your type.

2. You need a good hematologist/oncologist. Not necessarily an MM specialist (these are rare) but one that is open to the new drugs, procedures, and protocols you will read about on the list, and willing to consult with an MM specialist. You must be able to communicate easily with them. If you are stonewalled or feel that you are kept in the dark or can't get the information you need or want, find another as soon as possible. You are in this for the rest of your life and Must have someone you can work with.

3. If you have kidney problems, you need a nephrologist as well.

4. Arrange to receive all labs and medical records as they are generated. You will need these for disability benefits, consultations, transplants, trials, etc. It is easiest to arrange up front to get them. Our lab faxes the results to our house and we pick up anything else from the doctor's office during visits.

5. Do not be afraid to ask questions on the list. If you don't get an answer right away, ask again.

Karen L.