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

[Mary115]

I found this article very helpful and might be appropriate for the discussions we have had here. I am learning so much in self advocacy and finding support from other women dealing with breast cancer..

lbbc.org/news-opinion/patie...

[NShaft]

Thanks for posting this. I took part in the survey and hadn't seen the results. I'm so glad to see discussions about the fact that we are not "one size fits all".

[Mary115 in reply to NShaft]

Thank you for taking part in the survey. Very helpful.

[love2golfwell]

Thank you for sharing this article. I believe that Anne is one of the ladies on our site here that goes by the nickname Bestbird. I think she wrote a book about metastatic breast cancer. Someone please correct me if I am wrong about that. I have read things on here where dosages were lowered and women still had success with their treatments and less side effects. When I first went on Ibrance I asked why they would give everyone the same dose when everyone's weight is different. It would seem that someone who is 130 pounds or less should not receive the same dose as someone who is over 200 pounds, but they said that it is the standard of care.

[Mary115 in reply to love2golfwell]

Hopefully the one size fits all approach is changing and we consumers are doing that. I certainly will be asking more questions from my onc.

[Bestbird in reply to love2golfwell]

Very glad to see the level of interest in flexible dosing strategies based upon patients' unique characteristics!

As the Founder of the Patient-Centered Dosing Initiative (PCDI), I delivered the presentation at ASCO 2021 that was described in this article. I'm also the author of the book, "The Insider's Guide to Metastatic Breast Cancer" which is also available as a complimentary .pdf.

I'd encourage anyone who may be interested to visit the PCDI's website at therightdose.org On it you will find the results of the Patient Survey, the survey we just completed with Medical Oncologists, and on the Resources Tab, if you click on Dosage-Related Studies, you'll see a list of MBC drugs for which data exists about the efficacy of lower doses.

If you have questions or want to remain informed about the PCDI's activities, please email [e-mail]

Thank you!

[Mary115 in reply to Bestbird]

BestbirdThank you for your work and assistance. I too am going to provide my oncologist with this information. Wondering if lower doses of AI (anastrozole or examastane) are possible especially for a post 75 yr. old woman.

[Bestbird in reply to Mary115]

Whereas many drugs for MBC are available in multiple doses, endocrine (hormonal) therapies only are available in one dose. So the drugs you mentioned are out of scope for flexible dosing. At some point I'd like to fully understand why that is!

[Mary115 in reply to Bestbird]

You and me too.. A 70 plus year old woman is having estrogen reduction that puts her into a far older age bracket. Seems to me that the estrogen levels could be evaluated so that no more than what works to lower cancer risks is required.. Being pushed into an arthritic situation so quickly does not seem a good trade-off for some women. Common sense would indicate to eliminate only that amount of estrogen that is effective without causing more harm than potential good. Once again, I am so impressed and grateful for your work.

[Bestbird in reply to Mary115]

You raise an interesting point. It is intriguing that for HR+ postmenopausal individuals, there is still sufficient estrogen produced in the adrenal glands and possibly elsewhere as to render endocrine therapies effective against their cancer.

[love2golfwell in reply to Bestbird]

Thank you Bestbird for your work in this area. I signed up for the ASCO conference to watch your presentation but was not able to find it. However, now I get lots of emails from them with great articles that are very informative. I will look at the website you listed and intend to order your book. I don't have room on my computer to do a big download, too many pictures!

[Bestbird in reply to love2golfwell]

love2golfwell, here's the link! meetinglibrary.asco.org/rec...

With best wishes.

[love2golfwell in reply to Bestbird]

Thank you so much! Also, funny thing happened today. I was placing an order on Amazon and your book was in my cart. I did not remember putting it in there but I guess I am really supposed to have it so I ordered it!

[Bestbird in reply to love2golfwell]

It must've been meant to be! : )

[love2golfwell]

Yes, I hope so too. I have an appointment with my oncologist this Wednesday and I am going to ask her if she attended this conference either in person or virtually and her thoughts about this.

[Bestbird]

For anyone interested in learning more about this topic, there'll be a complimentary webinar on June 28 at 3PM ET. Hope to see you there! sharecancersupport.org/cale...

[Mary115 in reply to Bestbird]

Thank you for this information. Hope to attend.

[Bestbird in reply to Mary115]

You are very welcome!