As we start off 2016, there is excitement in the air. Three new drug approvals, the Black Swan Research Initiative® is moving strongly into cure trials; it seems that we have myeloma on the run! Yet the reality is that we all know friends, support group members, patients who are not doing well, whose lives are threatened by myeloma despite all that is new and wonderful.
In addition, patients and their families are bombarded—and no doubt, confused—by enthusiastic reports in the media about all the new options and new research endeavors. But new is not always better. This is true of drugs, and also true of research approaches. Indeed, some recently touted ideas—while no doubt well-meaning—risk leading us in the wrong direction, as I’ve noted in blogs about precision medicine and myeloma research crowdfunding.
So in 2016 where are we really in controlling myeloma?
- The average survival is definitely improved – it has more than doubled in recent years, with improvements even for older patients for whom results have been slower to improve.
- We are seeing “good-risk” patients, who are younger and with good-risk chromosome (FISH) results and no other serious medical problems, living much, much longer with survivals of 15 to 20 years and beyond.
- BUT unfortunately, the average survival is typically about half of that, and it is still a major struggle to control the disease for patients with higher-risk features at diagnosis, such as abnormal chromosomes.
There are thus multiple types of myeloma. This means that no single drug, strategy or trial will provide all the answers. In addition, even the experts are not sure which new (or older) drugs will work best in each circumstance. It just takes time. Three drugs are better than two drugs for many patients as a first therapy, but some good risk-patients can have excellent disease control with two drugs (Revlimid®/dexamethasone or Velvade®/dexamethasone). What will be the ideal use for daratumumab (Darzalex®), ixazomib (Ninlaro®), and elotuzumab (Empliciti®)? There is not an immediate answer.
Who can you trust?
If news reports fail to clearly explain who should use what new myeloma drug, when, and how, who can you trust to discuss what all of this might mean for you? Your primary doctor is key. You must have a local hematologist/oncologist who either agrees wholeheartedly to implement expert advice or is her or himself capable of discussing and using the best therapies. For each patient, the IMF adage “Knowledge Is Power” applies. And in supplying that knowledge, the IMF is always available in so many ways to help.
No one answer fits all
Just know that no one answer fits all. Each myeloma patient’s situation can be unique. Seeking knowledge and counsel in 2016 is especially important! The future is bright, but we are not quite there yet. For some patients, long remissions will come sooner than for others. But for each patient, the best recommendations can be made. Striding forward into 2016, may my optimism and positive attitude be with you all as you seek your own best therapies.
Dr. Brian G.M. Durie serves as Chairman of the International Myeloma Foundation and serves on its Scientific Advisory Board. Additionally, he is Chairman of the IMF's International Myeloma Working Group, a consortium of nearly 200 myeloma experts from around the world. Dr. Durie also leads the IMF’s Black Swan Research Initiative®.