If you have a neuroendocrine tumor (NET), you can ask your doctor if you should think about trying an experimental treatment. The way to do that is to join something called a "clinical trial."
That's just a fancy term for a study that looks at a new way to treat a disease. Researchers want to see how well it works and if it has fewer side effects than treatments people use now.
When you join a NET clinical trial, you may have a chance to use something that isn't available yet to the public. Some things you might get to try are:
- New drugs
- Hormone therapies, vitamins, or supplements
- New types of radiation or surgery
- Combinations of current treatments
Even though it's an experiment, a clinical trial starts only after researchers show that the new treatments worked well and safely in lab tests or on animals.
How You Get Into a Trial
Your doctor can help you find one and decide if it's right for you. You'll need to apply and see if you meet requirements set up by the researchers. They may be looking for people of a certain age, sex, or ethnic background. Sometimes they want people who've already had other treatments, or who have a certain type of NET. They may also prefer someone who's just been diagnosed.
Besides finding out about trials from your doctor, you may see ads about them online, in the newspaper, or on TV. You can also check a web site called ClinicalTrials.gov that lists ones that are happening now.
Phases and Trial Types
Usually, there are different phases of clinical trials that study the new treatment on people.
Phase I trials often look at whether a treatment is safe and what side effects it causes. Phase II checks how well it works to treat your NET. Phase III compares the new treatment to those already available to see if it may be a better choice for some people.
After all the phases are done, the FDA -- a government agency that regulates drugs -- decides whether to approve the new treatment for sale in the U.S.
One thing to keep in mind: The clinical trial you're in may include groups of people who take different treatments in order to compare how well they work. Sometimes you won't know which treatment you're getting. This is called a "blind" trial.
You may have heard that some people in a clinical trial intentionally get a "pretend" or "dummy" drug called a placebo so that doctors can see how well that compares to the real medicine. Few cancer clinical trials use this technique.
If you're in a clinical trial for a new NET therapy, though, instead of the experimental drug, it's possible you may get only your current treatment so that doctors can compare how well it works to the new drug. If that's the case, even though you don't get to try the experimental drug, you can get the satisfaction of knowing that you're helping doctors learn the best way to treat people in the future.
Before you begin a trial, you'll sign an informed consent form so you know your rights as a patient, what you'll be asked to do, and any risks. Remember: You're a volunteer. You can leave the study for any reason at any time.
Costs and Convenience
Some clinical trials pay for the cost of things like drugs, doctor's visits, hospital stays, X-rays, and blood tests. But they might not pay for other costs, like transportation or hotel rooms. Be sure to ask up front about how much you'll need to spend and how much time it will take.
Every trial follows a schedule of when you're treated and tested. While you're in it, you may be asked to answer questions about how you feel, or need to take medical tests. This helps the researchers check for side effects or track how well a treatment works.
How to Weigh the Risks and Benefits
There are pros and cons to clinical trials. Think carefully about whether joining one is a good move for you. On the positive side, the study may let you:
- Try a new, more effective treatment if your current one doesn't work so well for you
- Take an experimental medicine without paying for it
- Get a treatment that's safer or has fewer side effects than the one you use now
- Help doctors find better treatments for neuroendocrine tumors
Now for the downsides. When you join a trial, you may find that you:
- Get side effects or feel ill
- Aren't any better off with the new treatment
- Need to take off work or be away from home and your family
- Have to pay for some treatments or travel costs
Talk to your doctor after you're diagnosed with a NET, and get their take on things. See if they think a clinical trial has benefits for you.