You’ve narrowed down a list of possible trials that could work for you, and you’re ready to take the next step. What’s next?
In COLONTOWN, we have several groups dedicated to helping patients navigate the process of finding and joining clinical trials. If you have found a trial you’re interested in, search or post in one of our groups to find out if any other members have insights on have researched the trial too.
We are very lucky to have the support of a trials curator, as well as many knowledgable members who may be able to give you a bit more information about the trial drug or treatment.
If you join COLONTOWN, you can also access a database called the Alanna Project, a list of trials that COLONTOWN members have participated in, and a summary of their results and side effects.
Take your list of trials to your oncologist and ask for their opinion. Your oncologist is most familiar with your particular disease, and should be able to give you an informed opinion on why a particular trial may or may not be a good option for you.
Many trials have strict eligibility criteria for participants. Double-check your mutations, MSS/MSI-H status, and biomarkers. Make sure that your tests and scans are up to date, to ensure you qualify for the clinical trials you’re interested in.
COLONTOWN University has lots of helpful information on clinical trials. Watch some DocTalks to gather information about your mutations or specific disease. Take a look at the Featured Clinical Trials Learning Center to get a good idea of what questions to ask when looking to participate in a trial.
Having another oncologist take a look at your trial options can be a good idea. Ask them to rank your options and explain their reasoning. This can give you a new perspective on your options.
Contact the trial coordinator. You can find this information on the trial listing, and it’s as easy as giving them a phone call. Find out if the trial is currently enrolling (has open spots), as sometimes trials have a break in recruiting or have waitlists. Talk to the coordinator about your personal and medical goals, and gather more information about the trial logistics. If the coordinator feels like you are a good fit, they will set up an appointment. You may also be asked to undergo a physical exam or other eligibility tests.
Studies in progress will usually have some preliminary results that researchers can share with you. Ask the research team about the percentage of patients who have had a complete or partial response to the treatment. Ask about side effects that other patients have experienced. Take a look at the results of prior phases or related trials.
Although this can’t guarantee how you will respond to a particular trial drug, it can give you a good idea about how other patients are faring, helping inform your final decision.
You’ve been making decisions your whole life, both big and small. Think about how you have made these decisions, such as what to eat for dinner, what job to take, and who to date. If you typically weigh a ton of information and data to make a decision, do that. If you typically go with your gut, follow that path. If you prefer to take recommendations from trusted sources, then that’s great. You know what works best for you — so whatever that is, it’s the best approach!
Have a conversation with your partner, children, and family members about how this clinical trial will affect your lives. If you have to travel regularly for treatment, does this leave your partner to manage a full-time job as well as childcare? How will this affect your joint finances? Weigh the pros and cons, and make sure that you are all on the same page. However, it’s important to remember that final decisions about your treatment are yours to make.
Set up a meeting with the trial organizers to go over all the tests and procedures you need. Discuss the different arms of the study, what the ratio of the arms are, and when or if you will learn which arm you will be on.
Is there anything may affect your treatment plans in the future? What happens when the trial is complete? What happens if you experience progression or want to stop the trial? If the treatment works for you, how do you access it after the trial ends?
Ask them about what the schedule looks like — as well as any other questions you have about costs, travel needs, etc.
Sit down with your loved ones and a calendar and plan out what you need to do in order to start the clinical trial. When will you sign the consent form? When is your first trial appointment? How will you cover time off work, childcare, or any other personal matters? How will you plan for your washout period — the time you need to be off other treatments before starting the trial? This may be a good time to get unrelated healthcare taken care of (dental care, routine appointments etc). Coming up with a comprehensive plan can help you and your loved ones manage new routine changes that come with signing up for a trial.
After you agree to enroll in a trial, you will be sent a consent form. Take a close look at the consent form with the help of your oncologist. These forms can look long, complicated and overwhelming, but these forms are similar to agreements you may have already signed — like a lease or a contract to buy a new car.
By the time you get to the consent form, you should have all your major questions answered by the trial organizers. So consent forms are not a good place to get new information about the trial — they are written more like legal documentation covering any possible scenario. You should be aware of this, so you aren’t surprised or scared when you see it!
Remember that consent forms are not binding, and you can withdraw from the trial at any time for any reason.
Keep a copy of the signed consent form for your records. Some trials may require you to register at the cancer center as a patient. Make sure you keep track of all the little things you need to do once the trial starts.
Lastly, sign up for COLONTOWN, and share your trial experience with other patients!
Join one of our COLONTOWN Facebook groups:
Want to join? Fill out the registration form here.