Patient advocates ask if maximum dose is always the right dose for metastatic breast cancer

A patient advocate-led survey found that the vast majority of people with metastatic breast cancer have had an experience with at least one “bad side effect” and would discuss different medicine doses based on their personal characteristics. The findings were presented on June 5 as part of the American Society of Clinical Oncology Annual Meeting.

This survey was the first step in the process of learning if there could be a different approach to treatment where people affected by metastatic breast cancer and their doctors discuss the best dose for their personal situations.

Background

This survey was designed to study the relationship people with metastatic breast cancer have with side effects and changes to the dose of their medicines. Presenter Anne Loeser, founder of the Patient-Centered Dosing Initiative, said the study was inspired by new challenges to the idea that using the highest dose possible — and the side effects that come with that high dose — will bring the best results. These challenges include the rise of targeted therapies that may not bring better results above a certain “optimal” dose. Additionally, Ms. Loeser pointed out that medicines used in early-stage and metastatic breast cancer often have one dose, even though the goals of metastatic breast cancer are different and the treatment goes on as long as the medicine works, with no defined end date.

The goal of the survey was to learn four things about the experience of people with metastatic breast cancer:

• How often do people with metastatic breast cancer deal with side effects and how bad are those side effects?
• How do people with metastatic breast cancer communicate with doctors about side effects?
• What effect do dose reductions had on people’s quality of life?
• Are people with metastatic breast cancer are willing to discuss different dosing models?

The final, anonymous survey included 27 questions and was completed by 1,221 people in August 2020.

Results

The survey found that the vast majority of people with metastatic breast cancer were open to discussing dose options based on their personal characteristics:

• 92 percent replied “yes.”
• 7 percent replied “don’t know.”
• 1 percent replied “no.”

Additionally, the survey found that more than half of the people who responded did not believe that the highest dose of a medicine is always the best dose.

The survey also asked about people’s experience with side effects and dose changes in metastatic breast cancer treatment. Fatigue was the most common side effect – reported by 90 percent of all people in the study – and there were eight side effects each experienced by over half of respondents, including diarrhea, low blood counts, pain, and neuropathy.

The survey found 86 percent of people reported having had a “bad side effect.” For people who had a bad side effect, the survey asked about their experience:

• 20 percent said they visited the emergency room or hospital as a result of the side effect.
• 43 percent said they missed treatment because of the side effect.

The survey also asked how the side effects were managed. For the people who told their doctor they had a bad side effect, 82 percent said they received assistance for their complaint. The most common assistance was lowering the dose of their cancer treatment, reported by 66 percent of people who got assistance for their side effect. Other remedies included recommending another medicine to address the side effect and suggesting lifestyle changes.

The survey found 83 percent felt better after the dose was lowered, and for 71 percent of the group, that relief was lasting.

Limitations

Despite efforts of the researchers to reach out to different communities, 88 percent of the people who responded were white. It is important to understand the experience and feelings of people from different communities and racial and ethnic backgrounds in considering changes to how treatment is given. More research should be done to better understand the experiences of other ethnic groups, who may have different experiences both in side effects and in their conversations with doctors.

What this means for you

This survey was the first step in an effort to change the way doctors recommend treatment doses in metastatic breast cancer. As reported in the study, lowering doses in response to side effects is very common and accepted in treatment, and these advocates are asking whether people can discuss with doctors getting a lower dose to start if appropriate based on their individual features, rather than changing treatment after going through distressing side effects.

Ms. Loeser reports that the next step is to survey oncologists about their treatment of side effects and interest in discussing treatment doses with patients. Following that, advocates will work with partners in healthcare to look back on existing data on doses and to build more data on dose options into future studies.

The final results of this effort may take time to realize, but this survey being featured at the ASCO Annual Meeting shows a positive effort in welcoming the voices of people affected by breast cancer into research conferences. This is the second ASCO Annual Meeting since the COVID-19 pandemic shut down many in-person events, and both virtual meetings were made free to patient advocates who wanted to attend. Inviting people who are living with breast cancer into research spaces is important to making sure treatment is suited to the people who are taking it and sensitive to their experiences and needs.