The following account was written by myeloma patient, Steven Hope.
I was diagnosed with multiple myeloma in 2009. I had horrible cytogenetics, and with each succeeding relapse my cytogenetics grew worse.
The will to live and stay fit has been the trick to my survival. Now that I have endured eight lines of treatment, as my oncologist says, at this point, my cytogenetics doesn’t mean a thing regarding my survival.
I was informed that I have nearly every known mutation that multiple myeloma can manifest. But I live on.
In 2020, I was informed by my oncologist that I had exhausted basically the entire standard of care treatment options available, and he referred me to Levine Cancer Institute in Charlotte, NC.
I have been fortunate to get referred to drug trials at Levine Cancer Institute (LCI). Dr. Paul, my LCI oncologist, has now enrolled me in three drug trials to date.
You may now get the impression that drug trials are all I have left, and this is true. Fortunately, there are many other drug trials with different modalities available.
My first two trials utilized bi-specific immunotherapy. These are bioengineered monoclonal antibodies that mate T cells with cancer cells, and I have enjoyed nearly four years of controlled progression, with brief periods of complete response, MRD (minimal residual disease) positive.
My first bispecific trial was the TeneoBio-sponsored, BCMA-targeted immunotherapy, which is close to FDA approval. The second trial was Janssen-sponsored, Talquetamab, a GPRC5D-targeted bispecific immunotherapy.
Talquetamab has since been approved by the FDA. Both drug trials were phase 2 trials.
I’m now embarking on a new drug trial, and this time a phase 1 trial, sponsored by FATE Therapeutics, FT576.
This trial utilizes a new treatment agent, CAR-NKC immunotherapy. Instead of activating T-cells, as with CAR-T, Natural Killer Cells are activated.
I’m one of 21 individuals, at this point, enrolled in this phase 1 trial. This Chimeric Antigen Receptor-mediated treatment has the same upfront pre-dosing as CAR-T.
In the drug trial world, Phase 1 trials look at maximizing dose level tolerance and toxicity, while Phase 2 trials address efficacy within the dose level range.
I’m two months into this trial and can’t believe how many vials of blood I've had drawn and bone marrow biopsies I have endured, but blood rebuilds.
Staying the course is important. Like any treatment, while participating in a clinical trial, you want to receive the maximum benefit, and strictly following the trial protocol gives the best data the sponsor requires.
Of course, if there are positive results of lower cancer numbers, both you and the sponsor benefit.
I want to share with you what my oncologist said to me at my last appointment.
Dr. Paul said,
"I’ve never had a patient through 3 drug trials. Steve, you are a legend."
I asked him what he meant by that declaration, and he said,
"You have been the most compliant and cooperative person that I have ever had as a patient."
I guess I’m holding up my end of the bargain by providing good data for the sponsor, and I’ve received extended life in return. If you’re at the end of your treatment options, consider enrolling in a drug trial.
To explore open clinical trials, check out our Clinical Trial Finder: HealthTree Myeloma Clinical Trial Finder
To read more patient experiences, click here: Myeloma Patient Stories
Want to share your story with our myeloma community? Email firstname.lastname@example.org and let's get started!
about the author
Audrey is the Editor for the HealthTree Foundation for Multiple Myeloma. She originally joined the HealthTree Foundation in 2020 as the Myeloma Community Program Director. While not knowing much about myeloma initially, she worked hard to educate herself, empathize and learn from others' experiences. She loves this job. Audrey is passionate about serving others, loves learning, and enjoys iced chais from Dutch Bros. She also loves spending time with her supportive husband and energetic three-year-old.
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