Over the last few years, cancer patients have become ever hopeful that a cure is around the corner. "Breakthrough designations" and "fast-tracked" drug statuses have helped fuel this excitement and bring needed treatments to the clinic faster. For example, new therapies that use the immune system to kill cancer cells look incredibly promising as do "precision medicine" targeted therapies. But researchers are quick to warn that new treatments are only beginning their long journey into clinical trials. Results remain to be seen. And even with the excitement, many patients wonder if the treatments will reach them in time to truly be life-saving. Living without hope during cancer can be devastating, so here are my three suggestions to balance hype with true hope.
Keep the Faith
There ARE significant advances being made in cancer therapy. Multiple myeloma research in particular is advancing at an incredibly fast pace and myeloma patients are living longer than ever. There are an ever increasing number of drugs to treat myeloma and we've started to hear the word "cure" for the first time from myeloma specialists. For those who have heard in the past that myeloma could maybe, possibly, at some point in the future be considered a "chronic illness," this is real hope. Hope is also what fuels innovation and invites researchers to move the bar to try new drugs and new combinations.
Be Grateful for Clinical Trials
Although the process is long and arduous, clinical trials are still the safest way to bring innovation to medical care. The recent Keytruda trial in myeloma demonstrates that some trials using a brand new class of drugs could have unexpected and even serious outcomes. This is why the drugs are in clinical trials - to first test safety and then impact of a new treatment. Clinical trials are how researchers learn how the drugs really work in humans, what dose should be used and how they can be safely used in combination with other myeloma standard therapies. Today, clinical trials are tested in three phases. Phase I trials test safety and proper dosing. Phase II tests the drug alone for impact and Phase III compares the new drug with the existing "standard of care" to see if it is better. Note that some Phase I clinical trials aren't testing new drugs, but just combinations of new drugs being used together for the first time. Patients can select the phase of trials they join and balance that with their personal needs. A patient who has run out of options may jump at the chance for a Phase I trial while others may want to wait, especially if the myeloma armamentarium of already FDA approved drugs is open to them.
Put the Hype in Context and Take Control of Your Care
If there was ever a time to "own" your medical care, this is it. Study data comes out constantly and by reading up on myeloma news, clinical trials and study outcomes, myeloma patients or caregivers can gain a sense of the drugs that are the most impactful vs. those with minimal impact or serious side effects. When study results are reported, they are using "primary end points" to determine success or failure of the new treatments. These end points typically include "progression free survival," or how long a patient went without the disease coming back, and "overall survival," or how long patients lived. Myeloma docs are working to get "minimal residual disease" considered as a new primary end point as well. You'll see that some drugs extend life by a few months and others by years. Pay attention to these numbers because it will help you make treatment decisions. Even an improvement of a few months is incremental innovation and is a good thing, but may mean it's not going to be a blockbuster treatment. Make sure the study shows long enough results when you are comparing treatments. A study under three years may not show you which outcome is truly better at 5 or 10 years. Studies are also required to show safety results and side effects. Pay attention to the "adverse events" in grade 3 or 4. Researchers are particularly concerned about these when dosing new treatments. They want to avoid the higher grade problems while watching survival curves go up.
All of this implies that patients must dig in and understand the myeloma landscape. We try hard to help you do this in more simplified language in our Myeloma Crowd News section. Your knowledge can grow one piece at a time, but it starts with curiosity. When would you want to consider adding daratumumab to the mix? Is one triplet induction therapy better than another? What about if you are high-risk? What's the best mix of drugs to try at relapse? The effort you put into posing these types of questions will help you communicate with your doctor to discuss personally relevant treatment options.In short, we believe that hope plus knowledge is a winning combination.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of HealthTree Foundation (formerly Myeloma Crowd).