The Right Dose.Org

[Hazelgreen]

therightdose.org/?fbclid=Iw...

I don't recall having read about this organization previously. It apparently is interested in encouraging oncologists to move away from always prescribing MTDs (Maximum Tolerated Doses).

Its other name may be "Patient Centered Dosing Initative". The preamble on the site starts with: "We call into question the practice of repeatedly treating Metastatic Breast Cancer patients with the highest possible dosage (Maximum Tolerated Dose, or MTD) that causes the most challenging side effects, especially since MBC patients will repeatedly endure the most toxic dose at the beginning of each new regimen. We, as MBC Patient Advocates, support the dual therapeutic objective of sustaining our lives while affording us every opportunity to optimize its quality."

[love2golfwell]

Wondering if the lady who uses BestBird as her user name knows about this organization? I think she has spoken at various conferences about this topic and wrote a book which I believe is the Insider's Guide to Metastatic Breast Cancer that also talks about this. When I first went on Ibrance I questioned the maximum dosage. I asked my doctor why everyone would be on the highest dose to start even though we might weigh differently or have different levels of disease. She said it was the standard of care to start on the highest dose and see what happens. I have been on the maximum dose for 2 1/2 years, but am wondering if a lower dose would be as effective. I don't currently have a lot of side effects but do worry about the long term use at the highest dose and the issues it could cause.

[love2golfwell]

Actually in reading this, I see that Anne Loeser (Best Bird) founded this organization!

[NPmary]

I absolutely agree with their efforts.

[13plus]

I think it’s a great idea. I also feel like it’s a questionable way to approach the dosing - except perhaps if you have a more urgent need for a drug to work quickly.

That’s how they design the trials of new drugs, so the oncologists are only following what dose been “proven to work”. Phase 1 of a trial is all about finding the highest dose possible.

In fact I was hoping to start on Phase 2 of a trial for a new drug last year but they apparently delayed it because they found that they were able to push the dose higher (than anticipated) and hadn’t finished working out what the upper limit dose would end up being

[Hazelgreen in reply to 13plus]

I don't understand why MTDs are the way to go, especially in clinical trials. Given how potent these meds are, it is really disrespectful to the poor folk who sign up for the trials!

[13plus in reply to Hazelgreen]

At least they do usually build the amount up over time in the trials. I guess they worry if they go low, and stay low dose that they worry it might be not effective, and then there goes the whole study out the window. So in that respect I understand why they aim for a higher dose - to have a better chance of it working. There needs to be some kind of external benefit/motivation for the drug company to then prove the same effectiveness but at a lower dose