Making Dosing More Patient-Centric

[Bestbird]

So proud to present this outstanding perspectives piece about Patient-Centered Dosing penned by Martha Carlson in Cure Magazine!

If you've ever suffered from a treatment-related side effect, read this article.

curetoday.com/view/when-the...

[stardust1965]

Anne

Wonderful! Thank you for sharing this here and for your continuing work for all MBC patients. The initial lower dose for some treatments is starting to seep in which is good news for some patients. I was recently told at the Royal Marsden that they sometimes start patients on a lower dose to see if patients tolerate the new drugs. We were specifically discussing Everolimus (Afinitor) at the time. It is so important to get the balance right between quality of life and drug effectiveness when we are putting such strong (but potentially life-extending) drugs into our bodies.

[Bestbird in reply to stardust1965]

stardust1965, it's so true - it's very important to get the balance right between quality of life and drug effectiveness. On the Patient-Centered Dosing Initiative's website under "Dosage Related Studies" is a list of MBC drugs for which studies on lower doses determined that a lower dose was as effective as the standard (highest) dose, so it's not always a matter of giving up quantity of life for quality of life. therightdose.org/resources

That said, we're seeking data about other MBC drugs as well (a laborious process!) to help patients and their physicians make informed decisions.

[stardust1965 in reply to Bestbird]

You are a mine of useful information that helps so many MBC patients. Keep going!I’ve banked this information for the future.🙏

Vicki

[Justme153]

I agree I think for as many different reactions cancer patients have to drugs the treatment of cancer needs to become more individualized. Always starting at the highest dose waiting for an individual to suffer side effects till they can't tolerate it and then reducing seems a little mean. Plus the fact that if it causes neuropathy even after the dose reduction the patient may have to continue dealing with that to some extent on top of the items they have to deal with that the cancer itself causes.

[Bestbird in reply to Justme153]

Justme153, you make a great point that once the damage is done, in certain cases (such as peripheral neuropathy) it cannot be undone. The routine practice of automatically starting patients on the highest dose is a relic of the chemotherapy era, and even then I've seen studies of Abraxane and Xeloda where a lower dose was as effective as the highest dose. Yet medicine is slow to change, which is the reasons it's so important to educate patients (as well as physicians!)

[Hidden]

It still is a trial and error approach! We need scientific and personalized efficacy of chemotherapy drugs based on our mutations. Not the trial and error approach when one drug fails on to the next, to see if that one works. My onc and I (with a second oncologist) have adjusted my dosage and schedule to a tolerable level. I'll know if that adjustment was positive or negative with regard to progression this month

We're spending research money on the wrong part of cancer treatment.

Anja

[Bestbird in reply to Hidden]

SpiffyCJ, indeed, one of the most frustrating and heartbreaking aspects of cancer treatment is the fact that a treatment that works for one patient does not work for another, despite their respective diseases and mutations appearing identical. Until the reasons for this are fully understood and treatments truly can be individualized, it makes sense to encourage dosage-related discussions between patients and their oncologists so that patients are not routinely subject to highest dose without such discussions taking place.

The thing is we also need data about the efficacy of lower doses, and that is something the Patient-Centered Dosing Initiative is pursuing.

Thank you for sharing your thoughts!

[LibraryGeek]

Anne, you should be proud of everything you do for us MBC patients- you make such a difference. Thank you for your work on this and everything else.

Jackie x

[Bestbird in reply to LibraryGeek]

Jackie, thank you for your kind words! I'm grateful for the wonderful patient advocates and medical oncologists who are members of the PCDI, and whose experience and insight are helping to guide our path forward!

[Teagla]

Hi BestBird!I was talking in another group about my thoughts on possibly having a lower dose of, or different treatment schedule for, Faslodex as I am having such overwhelming fatigue from it. It occurred to me that I take the same amount as people who are 50 and 100 lbs heavier and who have much more cancer circulating in their bodies.

She mentioned that you had been discussing work being done on tailoring treatment doses in a more individual manner. Do you know if there are any studies in that regard with Faslodex?

Best, Teagla

[Bestbird in reply to Teagla]

Teagla, currently Faslodex is only available in one dose (500 mg). This is true of the vast majority of endocrine therapies.

When Faslodex was first approved many years ago, the dosage was 250 mg. But it was since learned that the 500 mg was more effective, so the dose was changed.

I agree wholeheartedly that it appears to make no sense that a 90-lb. individual is prescribed the same dose as a 250-lb. individual. But that's also true for vaccinations, for example.

With good wishes.

[Teagla in reply to Bestbird]

Thanks! Maybe this can change in the future!