Are side effects taking a toll on your life?
You have options with patient-centered dosing
The right dose for the right person
Medicines for metastatic breast cancer (MBC) often come with side effects. But, did you know that many drugs that treat MBC can be just as effective at a lower dose, with fewer side effects? This approach to customizing your treatment regimen is called patient-centered dosing.
Talk with your provider about your side effects, what you like to do, and whether the medicines you take can be adjusted. Your care team can help find a dose and schedule for your medicines that is right for you.
At first I hesitated to say anything. I don’t want to be a bother or complainer. But it felt good for the doctor to say, ‘We have an alternative.’
I brought up the headaches that I was having immediately after my infusion. And right away with the lower dosage, I started noticing a difference.
Keep doing what you love
Side effects affect different people in different ways. When you start a new treatment, tell your doctor what’s important in your life. For example, your goal might be to work, have lunch dates with friends, travel, or play with children or grandchildren.
Talk to your team about any side effects that prevent you from thriving, such as:
- Diarrhea or constipation
- Fatigue
- Headache
- Mouth sores
- Redness, swelling, or pain in your hands and/or feet (hand-foot syndrome)
Learn more about treatments for MBC.
Standard doses are a starting place
Medicines for MBC are studied and approved for use at a dose that’s been proven to work. This becomes the standard dose, and your doctor is most likely to start there to give you the best chance of success. If side effects are interfering with your daily life or things you want to do, then adjustments may be possible.
When you’ve been through difficult cancer treatments, it can feel normal to push through discomfort without complaining. But, over time, you may be able to stay on a drug for longer if you can find a dose that works while allowing you to do things that you enjoy.
While some side effects are to be expected, you should tell your care team how your medicine is affecting you. Side effects may even be an early sign that a medicine should be discontinued, whether because of side effects or other long-term medical issues. Your oncologist can help you figure out what to expect and if a change is right for you. Never make treatment adjustments without your doctor’s approval.
Often, a lower, but still effective, dose may also allow you to keep taking a medicine for a longer time, which is important. Sometimes, other adjustments may be helpful. Talk with your doctor about taking your medicine at a different time of day or changing the rate of infusion, or you might ask about a temporary pause from your medication for a short “treatment holiday.” The earlier you bring it up, the sooner you can start feeling better.
Medicines that can be adjusted
Some breast cancer medicines that commonly cause side effects and can be considered for patient-centered dosing adjustments include, but are not limited to:
- Antibody-drug conjugates: sacituzumab govitecan (Trodelvy), trastuzumab deruxtecan (Enhertu)
- CDK 4/6 inhibitors: abemaciclib (Verzenio), palbociclib (Ibrance), ribociclib (Kisqali)
- mTOR inhibitors: everolimus (Afinitor)
- Chemotherapy: capecitabine (Xeloda), paclitaxel (Taxol), gemcitabine, carboplatin, eribulin
Let’s work together so that I can live as long as possible with the best possible quality of life.
Start the conversation
If you are experiencing side effects that are getting in the way, make a plan for your next appointment with your doctor. Write down your questions and concerns ahead of time.
Check out the Patient-Centered Dosing Initiative’s conversation guide >>>
Tips for talking with your care team about side effects:
- Use a journal or a symptom-tracking app to keep a record of how you feel. Try to write down when side effects occurred and what helped or didn’t help. Share this information during your next visit.
- Use your patient portal to write short updates to your care team. For example: “I’m on day 4 and having this problem. If it doesn’t get better by next week, I’ll call the office.”
- If your regular visit is short, ask to make a special appointment just to talk about side effects.
- Bring a trusted person with you to your appointments where you discuss your quality of life. They can help take notes, provide emotional support, and help make sure your questions are answered.
- Get a second opinion about your treatments annually, especially if you are not having treatment at a major cancer center. A second opinion can help confirm that you are receiving the most effective treatments with the fewest side effects.
- Be honest with your doctor to help them understand what you hope to get out of treatment. Partner with your treatment team by communicating early and often.
When you get to your appointment, try these conversation starters:
- I want to live as long as possible, but I also want to live as well as possible. What are my options for reducing side effects?
- I want to live well while taking this medicine, but my side effects are getting in the way of activities that are important to me. Can you suggest ways to help me reach my goals?
You have to speak up for yourself. You know your body. Don’t just give up.
It’s important for patients to know that they are as much in control of the situation as the doctor.
Living Beyond Breast Cancer is a national nonprofit organization that seeks to create a world that understands there is more than one way to have breast cancer. To fulfill its mission of providing trusted information and a community of support to those impacted by the disease, Living Beyond Breast Cancer offers on-demand emotional, practical, and evidence-based content. For over 30 years, the organization has remained committed to creating a culture of acceptance — where sharing the diversity of the lived experience of breast cancer fosters self-advocacy and hope. For more information, learn more about our programs and services.