Is Immunotherapy Right for Me?
If you have metastatic bladder cancer, when the disease has spread to other parts of your body, you’ve probably tried other treatments. If they haven’t worked, you still have options, including immunotherapy.
Talk carefully with your doctor to decide whether immunotherapy is a good choice for your treatment.
Making your decision
Your doctor will think about a few things before they recommend immunotherapy for you:
- The type of cancer you have
- How far the disease has spread in your body, called the stage of your cancer
- The chances your disease will come back
- The size and number of tumors
- Other treatments you’ve already tried
When making your decision, ask your doctor a few questions to get a better idea of the role immunotherapy might play in your overall treatment plan, such as:
- Why are you recommending immunotherapy for me?
- Will immunotherapy be the only treatment I get right now? How does it work with other types of bladder cancer treatment?
- How will it help me?
- What kind of side effects should I expect?
- How long will the treatment last? What is the process like?
Starting Immunotherapy: What to Expect
The FDA has approved several immunotherapy drugs to treat bladder cancer:
- Atezolizumab (Tecentriq)
- Avelumab (Bavencio)
- Durvalumab (Imfinzi)
- Nivolumab (Opdivo)
- Pembrolizmab (Keytruda)
Once you and your doctor decide to start one of these treatments, it helps to know a bit about what you can expect while you’re getting it.
How do you get immunotherapy?
To get immunotherapy, you’ll go to a treatment center on a regular schedule to get the medicine through an infusion, a tube that goes into a vein. Your doctor will decide how many rounds of treatment you need.
Your doctor will order some lab tests before and during your treatment to see how your body responds to the drug.
You take the medicine through a tube (an IV) that goes in one of your veins.
A doctor or nurse will look after you when you’re getting the IV to make sure you don’t have any bad reactions or side effects. If you do, your doctor might slow down the infusion or delay or stop the treatment.
Speak up if you feel any of these while you’re getting treatment:
- Flushing (turning red and feeling hot)
- Short of breath or trouble breathing
- Pain in your back or neck
- Puffy or swollen in your face
Even when you’re not at the treatment center, these drugs can affect how you feel. Side effects can include:
- Feeling tired
- Not feeling hungry
- Feeling sick to your stomach
- Urinary tract infection (UTI or a bladder infection)
- Rashes and itchy skin
- Muscle pain or weakness
- Joint aches
While immunotherapy helps your body to recognize cancer cells, there's also a chance that it may cause your immune system to work against healthy cells. That can cause serious problems with your lungs, intestines, kidneys, and other organs. Make sure to tell your doctor if you’re having side effects that don’t go away, such as:
- Coughing, trouble breathing, or chest pain
- Yellow skin or eyes
- Dark or brownish urine
- Severe vomiting
- Pain or cramping in your belly
- Bloody or black poop
- Problems seeing
- Weakness in your limbs
Some immunotherapy drugs can also affect your ability to have children. Talk to your doctor before you start treatment to figure out the options you have if you want to have a baby in the future.
Managing Side Effects
However immunotherapy affects you, you don’t have to live with those issues. You can work with your doctor and care team to manage them and be as comfortable as possible while the medicine does its work.
Some simple habits can help you manage these issues:
- Take an over-the-counter pain reliever such as acetaminophen to help with fever and muscle aches.
- Exercise keeps up your strength, energy levels, and your appetite. It may also help ease pain. Talk to your doctor about the kinds of physical activity that are safe for you.
- Your body is going through a lot, so give yourself time to rest every day. Get plenty of sleep at night and take short naps during the day if you need them. Make sure to give yourself time to rest between activities.
- Eat small, nutritious meals throughout the day, rather than the usual three larger ones, to help with nausea. This is also a good approach if treatment has zapped your appetite. Healthy, nutrient-dense meals also boost energy levels and fuel your immune system.
- Take care of your mind as well as your body. Think about joining a support group. Sharing your feelings with people who know and understand exactly what you're going through can be a big help when dealing with the side effects of treatment. Ask your care team to recommend some groups that meet in person or online.
If any of your side effects are severe, if they don't go away after a few days, or if you come down with a fever, call your doctor right away.
Keep talking with your doctor
One of the most important things you can do about your side effects is to keep talking about them with your doctors and nurses. They can prescribe medicines or let you know other things that can help you feel better while you’re getting treatment.
Be open and honest with them about how you're feeling, not just physically but emotionally. A treatment journal can help you keep track of any symptoms you're having. It's also a great way to vent your concerns and frustrations, and keep track of what you want to bring up with your care team at your next visit.
If Your Immunotherapy Stops Working
Immunotherapy may not work for everyone who takes it. If you’ve tried it and it didn’t stop your cancer, you still have a few options. What kind of treatment you get next depends on what others you’ve tried and what stage your cancer is in.
This treatment uses powerful drugs to kill cancer. Even if you’ve already tried some drugs before or along with your immunotherapy, your doctor may try other ones or different combinations of medicines to fight your cancer. Chemo drugs for the most common form of bladder cancer include:
You’ll get chemotherapy in cycles with a few weeks in between to give your body time to recover.
If you still have all or part of your bladder, your doctor might recommend an operation called a radical cystectomy. Your doctor will take out all of your bladder and the lymph nodes nearby. They might also remove some of your reproductive organs. For men, that could be the prostate gland and seminal vesicles. For women, it might be the ovaries, fallopian tubes, uterus, cervix, and a small part of the vagina.
After a radical cystectomy, you’ll have another surgery called a urinary diversion to create a way for your body to store and let out pee. Your doctor might use part of your small intestine or colon to direct the pee out of your body into a small pouch you would wear. Your doctor might be able to make a storage pouch for inside your body. Then you would only need to empty the pouch with a thin tube called a catheter. Another option is to connect the pouch to your urethra, the tube in your body through which pee comes out.
Scientists are always studying possible new treatments for bladder cancer. You might be able to join a research study called a clinical trial. Some clinical trials look at new ways of using treatments that are already available, like different combinations of drugs or new ways of doing radiation therapy. Others involve treatments that are completely new. The goal of these studies is to see if treatments are safe and how well they work.
If you think you might want to join a clinical trial, your doctor will help you make the decision. They will talk about:
- How the new treatment is different from the usual treatments you could get
- What the risks are
- Any tests you’ll need
- How often you’ll get treatment
You’ll be able to leave the clinical trial whenever you want, for whatever reason you might have.
Palliative care, sometimes called “supportive care,” aims to make you more comfortable during your treatment. It focuses on:
- Helping to control cancer symptoms
- Managing the side effects of treatment
- Helping you have a better day-to-day life
- Supporting you and your family
If your doctor suggests palliative care, it doesn’t mean they’ve given up on treating you. You can get this care at any time during your cancer treatment. It might include:
- Changes in what you eat
- Ways of teaching you how to relax