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Most Women With Metastatic Breast Cancer Have Troubling Treatment Side Effects, Willing To Discuss Dosing Options With Doctor

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About 86% of women diagnosed with metastatic breast cancer had at least one bad treatment-related side effect, and 92% were willing to discuss options for different dosing levels of medicines based on their unique situations, according to a study.

The research was presented at the 2021 American Society of Clinical Oncology (ASCO) Annual Meeting. Read the abstract of “Treatment-related side effects and views about dosage assessment to sustain quality of life: Results of an advocate-led survey of patients with metastatic breast cancer (MBC).”

About the Patient-Centered Dosing Initiative
About the study
What this means for you

About the Patient-Centered Dosing Initiative

The Patient-Centered Dosing Initiative was created to learn how people diagnosed with metastatic breast cancer feel about personalized starting doses of breast cancer medicines. The Patient-Centered Dosing Initiative is made up of a group of metastatic breast cancer patient advocates and an advisory board of four medical oncologists.

For many years, the idea behind developing dose levels for many breast cancer medicines was: the higher the dose, the higher the toxicity, the better the medicine worked. Still, there is usually no difference between the breast cancer medicine dose for early-stage disease and the dose for metastatic disease, even though people diagnosed with metastatic breast cancer receive treatment for the rest of their lives.

A study done at the MD Anderson Cancer Center found that a lower starting dose of Xeloda (chemical name: capecitabine) for people with metastatic breast cancer offered the same benefits as the higher dose, but caused fewer or less severe side effects.

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About the study

The Patient-Centered Dosing Initiative conducted an online survey between Aug. 6 and Aug. 22, 2020. People diagnosed with metastatic breast cancer were invited to complete the survey through social media, online support groups, and email lists.

The survey asked:

  • how common treatment side effects were
  • how severe the side effects were
  • how common it was for the person to discuss side effects with their doctor
  • the effect a dose reduction had on the person’s quality of life
  • the person’s willingness to talk about different dosing options with their doctors

Overall, 1,221 people completed the survey. Of these:

  • 99% were women
  • 80% were between 36 and 65 years old
  • 88% were white
  • 62% had recurrent metastatic disease, meaning they had previously been diagnosed with early-stage breast cancer
  • 38% had de novo metastatic breast cancer, meaning metastatic disease was the first breast cancer diagnosis they received
  • 60% had hormone-receptor-positive, HER2-negative disease
  • 17% had hormone-receptor-positive, HER2-positive disease
  • 13% had hormone-receptor-negative, HER2-positive disease
  • 10% had triple-negative disease
  • 46% had been diagnosed with metastatic breast cancer within 2 years of completing the survey
  • 83% had been treated with a targeted therapy medicine
  • 77% had been treated with hormonal therapy

The survey results showed that 86% of the people reported having a “bad” treatment side effect. The researchers said they didn’t try to define what a bad side effect was because what is bad to one person may be tolerable to another person. So they relied on the survey respondents’ perceptions of the severity of side effects.

Of the people who reported having a bad side effect, 20% said they visited an emergency room or hospital because of the side effect, and 43% said they missed at least one treatment because of the side effect.

The most common side effects reported were:

  • fatigue
  • nausea
  • low blood counts
  • diarrhea
  • neuropathy
  • pain
  • mouth sores
  • constipation

Nearly all the people who had a bad side effect — 98% — told their doctors about it, and 82% said their doctors helped ease the side effects.

Of the people who received help from their doctor for side effects:

  • 66% received a lower dose of breast cancer medicine
  • 59% were prescribed medicine to help ease their side effects
  • 53% received other help

Of the people who received a lower dose of breast cancer medicine:

  • 71% felt better on the lower dose
  • 12% felt better at first, but then felt the same

Almost all the survey respondents — 92% — said they would be willing to talk to their doctors about metastatic breast cancer medicine dosing options based on their unique situations.

“Given that 86% of patients with [metastatic breast cancer] experienced at least one significant treatment-related side effect and 83% improved after dosage reduction, innovative dosage-related strategies are warranted to sustain quality of life,” the researchers wrote. “Patient-physician discussions in which the patient’s physical attributes and circumstances are periodically assessed may determine the right dose for the patient upon treatment initiation and afterwards, and the vast majority of patients would be receptive to such discussions.”

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What this means for you

If you’ve been diagnosed with metastatic breast cancer, the results of this study offer some interesting insights.

If you have troubling treatment-related side effects, it’s a good idea to tell your doctor right away so you can discuss how to ease them. In some cases, your doctor may be able to prescribe medicines to help or recommend complementary therapies, such as acupuncture or mindfulness meditation.

You also may want to talk to your doctor about this study and ask if a dose reduction might help ease your side effects, while still effectively treating the cancer.

Together, you and your doctor can develop the best treatment plan for you, based on your unique situation and preferences.

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Written by: Jamie DePolo, senior editor

Reviewed by: Brian Wojciechowski, M.D., medical adviser

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