Strategies and tools for managing
side effects
This photo does not represent an actual patient and care partner.
Looking out for side effects, and how to manage them
- Be prepared for what’s to come: Ask his doctor about which side effects to expect. Doctors will answer your questions and offer information including brochures, guides, and specifics to help you identify side effects
- Assessment begins before treatment starts: Identify and share any family history, such as heart or metabolic complications, with your loved one’s healthcare team. Understanding potential changes can help you provide better support. Staying informed and working with the healthcare team to find the right medications or strategies for relief can help make a big difference in his comfort and well-being
Side effects can vary greatly from person to person and will depend on the type of treatment your loved one is taking. Their doctor or nurse may provide a list of the most common potential side effects that are expected with each type of treatment, but there is no guarantee that your loved one will experience them. For example, they might experience one or two of the common potential side effects, or they might experience side effects that are completely different from those that are expected. Every patient experiences their treatment in a unique way, so be prepared to ask your loved one’s doctor or nurse about any new or concerning side effects.
General side effects from treatments may include1:
- Fatigue
- Nausea and vomiting
- Diarrhea
- Constipation
- Headaches
- Loss of appetite
- Infusion-related reaction
- Injection site pain
- Flu-like symptoms with chills
- Joint pain
- Muscle weakness
Serious side effects may include2-4:
- Liver problems
- Adrenal gland issues
- Seizures
- Heart disease
Blood-related side effects may include1,5:
- Low red blood cell count
- Low platelet count
- Low white blood cell count
In rare cases, blood-related side effects may also lead to secondary cancers like myelodysplastic syndrome or acute myeloid leukemia, which may require stopping treatment.
Lifestyle-related side effects may include2,6:
- Erectile dysfunction
- Low sex drive
- Mood changes or depression
- Fatigue
- Trouble sleeping
Talk to your loved one’s doctor about these serious side effects and learn how he will be monitored for them.
Emotional and cognitive side effects may occur with specific treatments6-8:
- Androgen deprivation therapy (ADT) can cause “hazy” cognition and difficulty recalling information, mood alterations such as depression, and occasionally anger/rage have been reported by some patients
- Androgen receptor pathway inhibitors (ARPIs) like enzalutamide may cross the blood-brain barrier and cause changes in cognition
- Chemotherapy can cause general fatigue and malaise (a general feeling of discomfort or illness) which can slow cognition, sometimes referred to as “chemo brain”
It’s important to report any changes in cognition or mood to the clinical team.
Be aware of the frustration and possible resentment your loved one may feel upon losing independence and ability to provide. As much as possible, allow the patient to make decisions for himself
Monitoring for side effects
Depending on the treatment plan and the specific side effects, your loved one’s doctor will provide guidance on how to identify side effects throughout treatment. Your loved one may get tests periodically, and then more regularly. These may include9:
- Blood tests
- Bone density scans for patients on androgen deprivation therapy (ADT)
- Monitoring for blood pressure, cholesterol, and other heart health markers
- Chest pain
- Shortness of breath or difficulty
breathing - Fever (>100.4 ℉)
- Visual changes, loss of balance
- Facial numbness/droop
- Back pain associated with onset of lower extremity weakness/or numbness
Side Effects Tracker
Get tips to help manage common side effects. Reference this guide for practical ways to help reduce or ease side effects during treatment.
Managing side effects and being there for your loved one
Most men will be on ADT throughout treatment
As a care partner, understanding the potential side effects—and how they can be managed with additional treatments—will help you and your loved one better prepare for the treatment journey and stay on top of any changes as they arise. Learn more about how to manage side effects associated with ADT by expanding the accordions below.
The side effects may influence what type of management your loved one's doctor provides
- For pain management10
He may receive pain medications, medication to strengthen bones, surgery to support damaged bones, and a nerve
block - For urinary problems11 Treatment options may include medicines to relax the bladder muscles, a catheter to help urine flow, partial removal of the prostate, and pelvic floor therapy. If your loved one experiences urinary incontinence, consider having pads and adult diapers at home, along with extra sheets or towels. This will help with your laundry and cleaning load
Some medications can help reduce the risk of fractures and other bone-related complications9
- He may receive medicines to ensure that his bones remain strong to help prevent the spread of cancer to bones and fractures. If undergoing ADT, it’s important to support bone health by ensuring he gets enough calcium and vitamin D, encouraging him to stay active with resistance training and high-impact exercises, and to quit smoking (if applicable)
He may experience sexual side effects such as erectile dysfunction or decreased desire to participate in sexual activities9
- If the loved one you’re caring for is a spouse or intimate partner, your sexual relationship may change—this is normal. Use of medications, sex toys, and lubricants may help, but it’s important to talk about these issues openly together or talk with the help of a therapist
Your loved one may need more emotional support9
- Patients will undergo mood changes such as mild depression, irritability, and reduced patience. Be aware of these mood fluctuations and be prepared to speak to your loved one and even the healthcare team if mood changes become problematic. You can use gentle language to approach your loved one, such as, “I notice you seem more irritable lately—I think this is a side effect of the hormone injections. Is there anything I can do to help?”
The Prostate Cancer 360 program can assist on the ADT journey by providing tips to manage side effects, information on healthy diet and exercise, and lists of assessments that patients can expect
How incremental lifestyle changes can make a big difference
For men on ADT, IncreMENtal offers lifestyle changes that help build healthier habits for managing side effects of treatment. IncreMENtal helps men learn key factors about what impacts their health, and how introducing changes can help them build physical and emotional strength through their diagnosis.
IncreMENtal is comprised of 3 courses and each one is divided into 4 weeks. The courses cover different topics such as nutrition, exercise, mental health, and more.
The first course looks something like this:
Week 1: The course begins with a focus on the building blocks of nutrition, the importance of physical activity, how the body reacts to treatment, and key health markers to keep track of
- • Nutrition is the difference
• Exercise is everything
• Mental health matters
• Beyond PSA and testosterone: overall health with ADT
- Nutrition is the difference
- Exercise is everything
- Mental health matters
- Beyond PSA and testosterone: overall health
with ADT
Week 2: Explore the role of healthy fats, the science behind exercise, how to manage emotions, and how to combat the impact that treatment has on bone health
- • (Some) fats are your friend
• How exercise affects your body
• Navigating new emotions
• ADT & bone health
- (Some) fats are your friend
- How exercise affects your body
- Navigating new emotions
- ADT & bone health
Week 3: Learn how to manage protein intake, build an exercise plan, how anxiety or depression present themselves, and how to manage sexual health during treatment
- • Protein pro tips
• Is there a right time to start an exercise plan?
• Anxiety, depression, & ADT
• Erections & ADT
- Protein pro tips
- Is there a right time to start an exercise
plan? Anxiety, depression, & ADT - Erections & ADT
Week 4: Know the difference in carbohydrates, the benefits of balance, how to cope with depression or anxiety, and how to navigate difficult conversations with friends and family
- • Being carb conscious
• Benefits of balance
• Coping with anxiety & depression
• Navigating tough conversations about ADT
- Being carb conscious
- Benefits of balance
- Coping with anxiety & depression
- Navigating tough conversations about ADT
This photo does not represent an actual care partner.
"We started making small changes—how we eat, how we manage stress, even how we move. It wasn’t about doing everything at once. It was about building better habits, one step at a time."