BY JIM OMEL, MD
While myeloma is a devastating and mainly incurable cancer, we now have many innovative ways to treat it. It is vitally important that each of us understands these new treatments and how they can fit into our individual situations. I have led a myeloma support group for about 20 years, and am energized by the positive feeling which comes from helping other patients. Each month at our meetings I remind the group that informed patients make informed treatment decisions. It is gratifying to watch as they interact and help each other. Helping and advocating for others is the point of this article. How can we be most effective in our desire to aid our fellow patients?
Valuable advocacy can be as simple as one on one discussions. Most new patients are totally confused by myeloma and get only limited help from the internet where facts and suggested treatments are outdated. The most useful and optimistic information a newly diagnosed person can receive will come from a fellow patient who has already traveled the course ahead. Explain the disease, the pros and cons of treatment choices, and how you made your own personal decisions. How did you determine whether or not to have a stem cell transplant? To augment their doctor’s description of expected side effects of therapy, explain the daily effects which you personally encountered such as fatigue, constipation, and mild memory issues. Let them know what neuropathy is really like. At the same time encourage them by how well you’ve done and explain how, for the most part, you can lead a fairly normal life.
Beyond these one on one discussions there are many other areas in which to be helpful. Participate in local Light the Night campaigns or Relay for Life, and in other fundraising campaigns. Write your representative in Congress to outline your health concerns and how pending legislation affects you. If you are adept at social media, it is a good place to mention exciting myeloma clinical trials and to explain that by joining, patients will be receiving “tomorrow’s treatment today”. Besides being unaware of myeloma it is also likely that new patients are ill-informed about clinical trials. Help dispel some of the negative myths associated with trials.
A personal pay-back to advocating for others is the feeling you engender in yourself. It feels good to “give back” and help someone the way somebody once helped you. Explaining the disease to others will also tend to keep you up to date as you consider answers to their questions.
If you have a science background or the motivation to educate yourself it is possible to take advocacy to a higher level. Consider becoming a cancer research advocate. Ask your own personal physician about becoming a member of your local hospital IRB (Institutional Review Board). Learn how you can actually give input to developing new clinical trial concepts or protocols. This area of patient advocacy requires a significant commitment of time, but it is very rewarding. You will discover a large number of active advocates representing many cancers besides myeloma. We share ideas and our various successes as well as our setbacks. While we all want better treatments for our own type of disease it is common knowledge that cancer, not just myeloma, is our enemy. Research success in any one type of cancer translates to success against all cancers. You will quickly discover that research advocacy is a good community to be part of with many helpful fellow advocates willing to share ideas.
When it comes to helping others with myeloma there are a few highly committed individuals who stand out high above the crowd and deserve special recognition. Anyone who has had myeloma for a while recognizes the lifetime dedication of Susie, Kathy, Robin, Yelak, Jack, Cindy, and Gary. I am amazed at what Jenny Ahlstrom has accomplished with the Myeloma Crowd and continue to privately and publicly thank her for educating all of us. Her interviews are outstanding and research supported by the Myeloma Crowd foundation will especially help high-risk patients.
To summarize, please consider the many ways in which you can help someone else with multiple myeloma at whatever level of interest and ability you have. The rewards to both you and them will be greatly worth the effort.