Taking Part In A Clinical Trial? What To Expect
- Your day-to-day schedule may be busier when enrolled in a trial, as the medical team will be closely monitoring the progress of the treatment and documenting even the mildest side effects.
- It’s important for patients to know that they maintain control and can withdraw from a trial at any point.
- Side effects are managed in real time, often more aggressively than outside a study. You will be able to communicate with your medical team frequently.
- It’s common to feel a range of emotions when considering a clinical trial (and while enrolled). There are many resources available to patients, including support groups, patient navigators, and mental health professionals.
Clinical trials are research studies that give investigators an opportunity to test new drugs to see how safe and effective they are compared to standard treatments.
Read More- Phase 1 determines the safety and dose
- Phase 2 evaluates the safety and effectiveness
- Phase 3 compares the new treatment against a standard treatment
What If I Get A Placebo?
Some people worry that they’ll get an inactive treatment called a placebo in a clinical trial. However, it’s important to note that in most cancer trials, the medical team will not just give patients no treatment. The trial will randomly assign the new treatment approach (the one being tested) to some enrolled patients, and give the rest the currently approved standard of care. The patients getting the standard of care are in what’s called “the control arm” of the study.You might think that a clinical trial is a last resort when all other treatments have failed. That isn’t true.
“I tell my patients that there is a clinical trial available at every stage of the disease,” Dr. Sumit Madan, a multiple myeloma specialist at Banner MD Anderson Cancer Center in Arizona, previously told SurvivorNet.
Finding The Right Clinical Trial
The best way of finding out about trials is, first and foremost, to connect with a cancer specialist in the field. It’s very important that you see a doctor who specializes in treating your specific type of cancer, usually in a high volume cancer center.
Another way to find a clinical trial is to talk with a patient navigator at your cancer hospital. Or, you can search through all of the ongoing multiple myeloma studies on ClinicalTrials.gov.
From Conversation to Commitment
Most journeys begin in an exam room when your doctor says, “There’s a study you might consider.”
You may be feeling an array of emotions at the thought of enrolling in a clinical trial — from curiosity about whether this is the best choice to anxiety about being treated with an experimental drug.
The process of getting enrolled in a trial typically involves the following:
- The information meeting: Rather than a hard sell, expect a balanced discussion covering why the trial exists, what scientists hope to learn, known benefits, and uncertainties still on the table. Patients are usually encouraged to bring a family member, a notebook, and the freedom to sleep on the decision before committing.
- Eligibility screening: Imagine a puzzle where every piece must fit exactly. Scans, blood tests, heart studies, or fresh biopsies verify that you meet the study’s medical rules. Screening can last anywhere from a few days to several weeks. During that window you continue routine care.
- Informed consent: The consent packet is long because it’s meant to be protective, not punitive. Take it home. Mark it up. Phone a friend who understands medical jargon. And remember: signing does not chain you to the study. You retain the right to step away at any point.
The Rhythm of Trial Life
Once officially enrolled, your calendar becomes the backbone of the trial experience. Visits might feel longer than ordinary appointments as more vitals, more labs, and more conversations with the medical team might be taking place.
Participants often describe the pattern like this:
- Baseline day: This includes one or two marathon sessions to capture every pre-treatment detail.
- Treatment cycle visits: Your appointment schedule might include weekly, bi-weekly, or monthly trips for infusions, pill counts, symptom interviews, and the occasional scan.
- Follow-up era: After the active drug period you still check in—initially every few months, and later, perhaps only once a year.
Interacting with a multidisciplinary team may feel surprisingly intimate. Many centers give you a direct number for the coordinator’s cell. That 24-hour safety net is something routine care rarely offers, and families often cite it as an unexpected comfort.
Side Effects and Safety Nets
No treatment — experimental or otherwise — is risk-free. Trials acknowledge that openly and will carefully document any side effects that pop up during the process. If the therapy is an infusion, you may spend extra time under observation on day one. If it’s an oral drug, you might keep a diary noting the hour you swallow each pill and how you feel afterward. Every side effect you list gets graded, filed, and reviewed by independent watchdogs who can halt the trial if danger outweighs benefit.
Most common reactions still fall under the familiar headings of fatigue, nausea, lowered blood counts, or skin changes. What differs is the intensity of monitoring.
That heightened vigilance can turn an anxious moment into a manageable inconvenience. Patients even sometimes report feeling safer when taking part in a clinical trial because of how accessible the medical team is.
Emotional Highs, Lows, and Coping Strategies
Clinical trials can feel like an emotional roller coaster: hope at the start, fear during scans, relief with good news, disappointment if cancer progresses.
There are many approaches that can help you deal with these wide-ranging emotions, including:
- Building a small “board of directors.” Choose two or three trusted people you regularly communicate with who can attend key visits, digest dense updates, and remind you of your bigger life beyond appointments.
- Use professional listeners. Psychologists and oncology social workers on the study team have heard every worry possible; letting them shoulder some of yours is a sign of strength, not weakness.
- Schedule joy. Block off time for whatever recharges you — Saturday breakfast with the kids, an afternoon gardening, ten quiet minutes with music and closed eyes. Joy on the calendar breaks the disease-centered narrative.
And know that even if a trial doesn’t cure you, it reshapes tomorrow’s treatment landscape. Every therapy we consider “standard” now earned its place because volunteers before you said yes when the option was still experimental. That legacy matters.
Colleen Conner Ziegler, a stage 4 lung cancer survivor, told SurvivorNet that enrolling in a clinical trial inspired her to become an advocate for cancer research.
“I actually woke up one morning, and I said, ‘you know what, Colleen? You have a voice, and you know what? Let’s figure out how you’re gonna use it.’ So, I started as a mentor to people who were newly diagnosed. And then that all just eventually led to being a research advocate,” she said.
Life After the Trial
An end-of-study visit rarely feels like a farewell. In many protocols you may continue receiving the medication in an open-label extension, especially if it works for you. If not, your primary oncologist resumes the driver’s seat and outlines next steps — which could include another trial, standard chemotherapy, targeted therapy, or supportive care focused on comfort and quality.
Years later you might still receive short surveys asking about your health, work status, or family milestones. Answering takes minutes, yet those long-range data points reveal whether early benefits translate into durable survival and well-being.
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