Beyond Standard of Care
As part of our TACT (Talking About Clinical Trials) program, Cancer Hope Network connects patients considering participating in a cancer clinical trial with a trained volunteer who’s been through one. A cancer diagnosis on its own can be confusing, terrifying and more than a little daunting. Add to that the opportunity to try a new treatment protocol and it can feel downright overwhelming. Talking with someone who has been through the clinical trial process – facing many of the same questions, making the same decisions and even fighting similar challenges – is empowering.
CHN is proud to partner with Clara Health, an organization committed to being “the simplest, fastest, most patient-friendly way to connect you to the newest treatment options.” Click HERE to create a personalize profile and start a customized search for a clinical trial that best meets your needs. You'll find guides, FAQs and more HERE.
Today, we feature Support Volunteer Suzanne’s thoughts on clinical trials. Regular readers will recognize her as a frequent contributor to this space – and we’re sure our entire eHOPE community will benefit from her experience and willingness to share.
Diagnosed with multiple myeloma in 2010, Suzanne received induction chemotherapy and a stem cell transplant in 2011 followed by ongoing medical therapy as part of a clinical trial. She has been a CHN Support Volunteer since 2013.
The top concern, expressed in a recent International Myeloma Foundation survey of Myeloma patients, regarding Cancer Clinical Trials (CCTs) was “being randomly assigned” (59%), followed by the “fear of receiving a placebo” (55%). This suggests the need for some education and awareness among this population of cancer patients. I would assume other cancer patients feel similarly.
Some Phase Three Trials can have an arm with a random assignment, but it’s often limited to the Standard Treatment as an option. In my first trial, I was offered the chance to participate in the arm that had a chance of random assignment of an extra Stem Cell Transplant (SCT). I chose the Single SCT and was left out of that particular part of the trial, but it did not affect my qualification. No trials use “placebos” anymore – as the comparison is always with the “Standard of Care” which is basically the most recent, FDA approved treatment that works the best thus far.
(Standard of Care - Treatment that is accepted by medical experts as a proper treatment for a certain type of disease and that is widely used by healthcare professionals. – NCI)
My experience with CCTs has been very positive, particularly in the most important factor: efficacy. I’m currently in my second Phase Three trial, this time of three drugs, two of which are Standards of Care for Myeloma and the third, an immunotherapy drug that’s more than 10 years old, tested in this combination and disease. In the dynamic field of Myeloma Research, there are countless trials going on at any given time, many of which are different combinations. It is my opinion that if your Hematologist Oncologist does not have access to CCTs you are in the wrong place. Myeloma is a tricky disease, which has been described as many different cancers – because it manifests differently according to a lot of factors that are singular to a patient. Chances are good that your doctor can find a CCT for you. (Or click HERE to start a search via our partners at Clara.)
Here are the basics to know about CCTs:
They often are studying a new therapy, a new combination of therapies, or a new use for a standard therapy
They are very carefully controlled
They are designed to improve cancer care – that is, more effective, fewer side effects
Taking into account these basics, it makes sense that the Standard of Care is the least possible course of treatment you will get. Most of what you will have access to are Phase Three Trials, that are open to large numbers of patients for maximum significance, as Phase One is limited to laboratory work, and Phase Two is on human subjects, but is very limited in scope.
The careful control, the protocols and levels of informed consent can actually mean more time with your Doctor and you entire cancer care team. The best thing for you, as a cancer patient, hopefully, with your caregiver(s), is to be informed, and being in a trial gives you another layer of information and careful monitoring.
As I continue my journey with Myeloma and clinical trials, my side effects are diminishing as treatments progress. I have experienced fewer issues than with the treatment I was on 5 years ago - - and my current treatment showed amazing results within the first 4 weeks – to an undetectable level. This is the best reason of all that clinical trials have been very good for me. Not everyone on my trial is doing as well as I am, but I know that it’s working for me, and that it is improving cancer care overall. Ask your doctor about CCTs, and keep asking: it could be an option for you.
Considering a clinical trial? Click HERE to connect with Suzanne or another clinical trial participant.