Newly Diagnosed Patients & Caregivers
As a newly diagnosed patient you will likely want some guidance as to how to deal with Multiple Myeloma.
You may read or hear terms such as "incurable," "death sentence," or "fatal." However, many of us have come to understand 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. Educating ourselves about the disease and seeking support of others willing to share their knowledge and experiences becomes very important.
Here are a few items to consider:
When first diagnosed, ask what stage. In addition, ask what MM markers are used to determine that stage.
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 five years, and 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.
Get copies of all your labs and develop a spreadsheet of your results. We can provide a spreadsheet template. Be especially certain to track blood counts (red, white, platelets), kidney & liver functions, as well as your MM markers (IgG, IgA, kappa/lambda chains, plasma %). This may be a great task for your caregiver and keeps them involved.
Many doctors make dictations of your visit. Ask to be copied and mailed those dictations.
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 labs spreadsheet and dictations available for that second opinion.
You’ll have many questions for your doctor. Write them down ahead of time to make sure they are asked. Take time to understand and write down the answers. Better yet, take an audio recorder and/or your caregiver to your appointments.
These are just some ideas that may work for you. Our monthly meetings are a great place to learn more and compare notes with others. The important thing is that you become educated about MM and receive the best treatment possible.
Experienced Multiple Myeloma Patient
Those of you who have been dealing with Multiple Myeloma for awhile, and who have not been part of our support group, may benefit from additional insight as to how to proceed with your on-going treatment, what things to expect given a particular treatment regime, or what side effects you should anticipate. For some of us, this means finding treatment options that allow us to move along with a reasonably good quality of life. One of our members characterized this approach as going from "lily pad to lily pad."
Our group has several members who have successfully battled Myeloma for over 10 years.
The SFBay Area Multiple Myeloma Support Group is here to help.