Piqray fail-only Fulvestrant now?

[Saltandlight]

Hello all. As a follow up to my original post, I finally got an answer today from my oncologist that because of my Piqray fail due to the extreme hyperglycemia and multiple adverse AEs, they are going to administer Fulvestrant only along with quarterly Zometa injections. I feel like this may be going on a wing and a prayer but they would not prescribe any other oral meds or treatment. Welcome any thoughts on this approach. Thanks!

[kokopelli2017]

hi S&L.

what was the explanation given? if none was given, or if you are questioning the answer, I recommend a second opinion...it is in your best interest (at a different cancer center). second opinions are very common, I am on fulvestrant only, but by my choice. best wishes!

carole💛

[Saltandlight in reply to kokopelli2017]

The explanation was Piqray was my only targeted therapy choice available at this time and because I can’t tolerate it they will stick with Fulvestrant alone. They also said I had a “lazy” cancer that they would monitor with bloodwork and scans. Fulvestrant is my second line now as I was on Ibrance/Letrozole . I am planning on getting a second opinion and am praying a new targeted therapy will be approved soon and for all my fellow warriors.

[NPmary in reply to Saltandlight]

This is a standard second line treatment. I am on it as well. Of course, no harm in a second opinion - ever.

[kokopelli2017 in reply to Saltandlight]

hi again. thanks for explanation. my cancer is also described as 'indolent'...aka....'lazy'😉. but of course I assume that will change, at some point🤞. good to hear you plan to get second opinion👍. good luck and best wishes💜

[bubblystream in reply to Saltandlight]

A lazy cancer is so nice. Wait and use the aggressive meds when you need it. Maybe you won’t need it!

[Fiercefighter13]

Hi Saltandlight! I tried Fulvestrant only after I failed Piqray due to severe side effects after the first nine days on Piqray. Unfortunately Fulvestrant alone let my cancer go. gangbusters and my markers skyrocketed within 6 months. It does work well however for many people. I was switched to Xeloda and that it is working miracles for me. I hope Fulvestrant works well for you!

[HelenWi]

Hi SaltandLight!

Maybe you can get a scan in a short time to see how Fulvestrant alone is working. And while tumor markers alone don’t tell the whole story, you can also see if they start going up.

It would be great if you could stay on Fulvestrant alone after your rough time with Piqray. Fingers crossed!!

Best,

Helen

[kokopelli2017 in reply to HelenWi]

hi Helen. just to clarify....SaltandLight has never been on Fulvestrant before. she was on ibrance and letrozole for 5.5 years previous to trying Piqray. carole

[HelenWi in reply to kokopelli2017]

Whoops ! Thanks for catching that!

[kokopelli2017 in reply to HelenWi]

💛

[bubblystream in reply to HelenWi]

Agree!

[PJBinMI]

I don't really have advise for you, but wanted you to know that before the targeted meds, like Piqray and Ibrance, alot of us did well on fulvestrant alone or with a bone mets med. I got over 9 years on it, starting with the then standard dose half as large as now.

[LDR1]

hi Saltandlight , I couldn’t see from your profile where you are located (different countries seem to have somewhat different approaches) but if you have questions about this and don’t feel your oncologist is being responsive / communicative enough, it’s a great idea to get a 2nd opinion. There are so many other meds out there I’m curious what the rationale is for their recommended Fulvestrant-only approach. Best of luck 🙏🏼

[MettavivorDS]

Fulvestrant alone is a very powerful hormone therapy. A targeted therapy cannot work by itself and needs the hormone therapy do its job. I, like you tried a targeted therapy (ribociclib) along with fulvestrant and Zometa for bone strengthening. The side effects from only one round were intolerable and so I’m on fulvestrant and Zometa only. My doctor told me that six years ago, before all the targeted therapies, that was the standard of care. Not having to take a pill every day is quite nice.

[mariootsi]

Hope you can stay on Fulvestrant alone!

[cpidacks]

I have been on Fulvestrant only since March of 2019 for MBC in my liver. My oncologist wanted me on Ibrance and Fulvestrant, but I have difficulty swallowing pills so she decided to try Fulvestrant only. This is my first line of treatment and so far so good. No signs of progression. I hope to get many more years out of Fulvestrant. Good luck to you.

[Figletf]

Saltandlight,I see many comments saying Fulvestrant alone has worked for them.

I worry if my current progression can be halted by just Fulvestrant which I now have been on for five weeks.I have a scan next week for my newest oncologist to get a baseline before I start another cancer drug .

Prayers for your condition to improve too 😘

[Saltandlight in reply to Figletf]

Prayers for you too!