As a newly diagnosed patient you will more than likely want some guidance as to how to deal with Multiple Myeloma. When first diagnosed with MM, you may read or hear terms such as "incurable", "death sentence", or "fatal".  However, many of us have come to believe that our goal as patients should be to manage our MM, and have developed the mindset that MM is a serious chronic but treatable disease.  Although not yet curable, there are several first line and subsequent treatments as well as clinical trials now available for MM that did not exist even as recent as last year.  As such, educating ourselves about the disease and seeking support of others willing to share their knowledge & experiences becomes very important.  Here are a few items to consider:

1)  When first diagnosed, ask what stage.  In addition, ask what MM markers are used to determine that stage.

2)  Your primary oncologist is key to your success, and as such, you’ll want him or her to be knowledgeable about MM.  Since MM originates in the blood, it’s ideal if your oncologist has hematological training.  Don’t be shy about asking how many MM patients he/she is currently treating, how many in the last 5 years, what has been their outcome.  If you don’t feel comfortable with your oncologist’s MM experience, consider finding another one…after all, it’s your life.

3)  Get copies of all your labs and develop a spreadsheet of your results (let us know if you want a spreadsheet template).  Be especially certain to track blood counts (red, white, platelets), kidney & liver functions, as well as your MM markers (i.e. IgG, IgA, kappa/lambda chains, plasma %). This may be a great task for your caregiver and keeps them involved.

4)  Many doctors make dictations of your visit.  Ask to be copied and mailed those dictations.

5)  Don’t be shy about getting a second opinion from a recognized specialist or “expert” in MM, even if it requires some travel on your part (some will do phone consultations).  Have the aforementioned labs spreadsheet & dictations available for that second opinion.

6)  You’ll have many questions for your doctor.  Write them down ahead of time to make sure they are asked.  Then take time to understand and write down the answers…better yet, take a tape recorder and/or your caregiver into your appointments.