Thank You for Taking the MBC Survey!

[Bestbird]

For everyone who responded to the MBC treatment survey, thank you so very much for your overwhelming support! There were 1,221 responses, and the results will be available in just a few weeks.!

What is the Patient-Centered Dosing Initiative (PCDI)?

The PCDI was launched in 2019 by a team of MBC patient advocates who are working with healthcare professionals to improve quality of life for individuals with MBC through treatment-related adaptations.

Since metastatic breast cancer is treatable but not curable, the majority of patients remain in treatment for the rest of our lives. Customarily, we are prescribed the highest approved dose of a drug whenever we begin a new treatment, and these high doses may trigger harsher toxicity-related side effects than lower approved doses. Yet lower approved doses are generally not offered unless there’s a medical reason that prevents us from taking the highest dose, or we experience significant side effects when taking the highest dose.

As a result of treatment-related side effects, some of us may have missed a treatment, been forced to stop a working treatment prematurely, and/or experienced a significantly reduced quality of life.

Therefore, the PCDI’s mission is to enhance quality of life, while maintaining therapy effectiveness, by encouraging patients and their physicians to collaboratively identify the optimal approved dosage of treatment based upon each patient's unique physical, circumstantial, and psychological factors. This is especially timely because recent evidence suggests that approved lower doses of some MBC drugs may be just as effective as the highest approved dose with less severe side effects.

It should, however, be noted that some drugs (especially hormonal therapies) do not have an approved lower dose, and that absolutely no patient should ever change their drug dosage or frequency without first consulting their physician.

The PCDI believes that this patient-centered approach to dosing represents an important step toward making treatment delivery more compatible with precision medicine. You are welcome to visit our website at therightdose.org to learn more!

With appreciation and best wishes,

Anne, PCDI Founder

[Hidden]

Anne -

You are an MBC powerhouse, my gosh! Between the amazing book, and now founding and getting the PCDI organization off the ground with the successful survey, I'm beyond impressed!!

Two things...

First, a note...I looked at the PCDI website and saw you had a testimonial re: your book from Dr. Mark Burkhard...He's the doc who heads up the "Outliers"/"Extreme Survivors" study that my sister and I are participating in (beyond the survey, e.g. tissue and DNA samples...)!! Small world!

Also, let me ask you this about the PCDI initiative -- I think this might be of interest to others on the site -- Can you please give us the "penny version" on what this is about? I'm reading it as questioning the practice of starting everyone on the highest dosage of some of the drugs. (I believe there are some exceptions...I forget the one drug I'm recalling, particularly toxic I assume, but I read discussion here a month or two of dif. docs starting high in some cases, low with gradual increases in others...)....

....In any event, I've noted here before, I'm a "more is better" kind of person, thinking that I'll take as high a dose as I can (reasonably?) tolerate. I'm gathering that this is not the right approach, and/or that you disagree? I'm hoping you can sort of spell out for me/us what you've learned and what you think about this and why you've taken it up as a cause...

With admiration!

Lynn

[Hidden in reply to Hidden]

Okay, I looked more deeply into the site/resources, esp. the studies re: Ribociclib (sp?)...

I believe that alot of the issue w/ high doses is related to neutropenia (sp?...I'll stop adding that...just a blanket acknowledgement that I can't spell medical words)...

Is the the premise (or one of...) your work by any chance related to the possibility that by suppressing our WBCs with the meds we are actually weakening our bodies' ability to contribute to fighting this disease? So net-net it's neutral or negative to take the high doses that cause the most severe neutropenia? (I'll admit that I doubt this is the case, but it's something I've wondered about... .

Thanks for sharing your expertise...

Lynn

[Bestbird in reply to Hidden]

Hi Lynn, Great to hear you and your sister are in Dr. Burkard's study, as I am too! He's a wonderful person who also serves on the PCDI's ASdvisory Board, along with 4 other Medical Oncologists of whom Dr. Rugo is another.

In a nutshell, recent evidence suggests that lower approved doses of some drugs (especially CDK4/6 inhibitors, Afinitor, and some chemos) may be as effective as the highest approved dose. Not all drugs have been thus studied, and hormonal therapies only come in one dose. You can look at the research here under the hyperlink "Non-Inferiority... "therightdose.org/resources

The issue is that since those with MBC will remain on treatment the rest of our lives and there is no cure for MBC, it doesn't seem to make sense to dose us in the same way as early stage breast cancer patients whose treatment is finite and who have a potential for cure.

Furthermore, since these high dosages generally are generally more toxic than lower doses, many of us suffer significant side effects which land us in hospitals or cause us to miss the very treatments designed to help us. To my mind, one of the most frightening aspects is when patients conceal the severity of their side effects from their physicians for fear of being taken off their treatment. Many patients do not realize that the vast majority of MBC drugs come in multiple approved doses (the lower doses are prescribed for patients with contraindications to the highest dose, or for patients experiencing significant side effects on the highest dose).

The PCDI suggests that patients and their medical oncologists should carefully assess the patient's unique attributes to determine the best starting dosage for that patient instead of routinely giving the patient the highest dose (unless there's a medical contraindication such as kidney dysfunction to start the patient on a lower dose).

We've drafted (and will soon finalize with our Advisory Board) 10 Patient-Centered Criteria to serve as a base for these patient-doctor discussions, which you'll see at the bottom of this web page. therightdose.org/resources

You'll notice that one of the 10 criteria is the patient's wishes and goals, which is of great importance!

I hope this helps - thank you for your interest and please let me know if you have additional questions!

With good wishes!

[Hidden]

Thank you so much for posting. This is interesting and very relevant stuff. I for one was always trying to stay on the highest dose of meds - thinking it would work best. Good to know this is not always the case.

Thanks again for all the information

Clare

[Bestbird in reply to Hidden]

BellaE, thank you for your interest! We encourage patients to discuss dosing options with their physicians, and to re-engage in these discussions when appropriate!

Sending best wishes!