New METS found in recent PET. Changing to Piqray

[Lolli2020]

For 2 years my MBC has been isolated to lymph nodes in my right groin and a successfully radiated iliac tumor. Since May there has been some activity "smoldering" in the area and they're now seeing activity in my right hip socket, as well as in the pubic bone and 2 lymphs in my left groin. I started on Ibrance, then Afinitor, and now Verzenio. I'll finish the 2 1/2 weeks I have left on the Verzenio, then do a wash out for 2 weeks and start Piqray. Wondering what experiences anyone has had with this treatment. I'll continue to get monthly Faslodex shots and Zometa every 3 months. I have Type 2 Diabetes since starting chemo meds, and Piqray tends to cause hyperglycemia and a rash. Not looking forward to starting yet another med. Hopefully some of you have had a good experience with this one?? Or maybe have some advice. Thanks and blessings!

[Hidden]

Hi Lolli2020 -

I'm sorry about the change in treatment...

I'm queued up for Piqray as my next treatment, probably soon, so I'm also interested to hear from others re: their experiences. I've read studies that showed pretty high incidence of hyperglycemia and a rash (due to allergic reaction?). Re: the hyperglycemia, I've read estimates of hyperglycemia ranging from maybe 30% to 60% of patients. My local onc has four patients on it; only one has had that issue and she said (based maybe on this small sample?) that she thinks is less of an issue than what we might believe based on what we read. And, from what I gather, they can generally control that side effect....I hope this is the case for you...

Please let us know how you make out with it...I'm wishing you the best!

Lynn

[Lolli2020 in reply to Hidden]

Thank you for your reply. We can certainly keep in touch and see how it goes for us. Those are the symptoms my oncologist told me to expect. I’m already on diabetic meds and my PCP adjusted those to help. I was told to take my singular and Claritin for the rash. I’ll start Piqray in about 4 weeks.

[Hidden in reply to Lolli2020]

Best of luck with it....I, for one, am glad they have these new types of treatments, even if it can be a "bear" to take them...

[Lolli2020 in reply to Hidden]

Yes - I agree that it's good to have these treatment options.

~Anita

[Lolli2020 in reply to Hidden]

Hi again! I just read your updated post and I see that you never switched to Piqray and that things have gone neutral for you (if I read that right). The jury is still out on whether or not Piqray is working for me. I've had some progression and some regression! Just finished 5 days of radiation to some new bone mets and will have a PET scan in 2 or 3 months to see how things are going between the radiation and Piqray. Am fighting with type 2 diabetes which started with first meds in 2018, but Piqray makes that so much worse. May need to do insulin. One more thing, right?!

I wish you the best and will continue to watch for your posts!

~Anita

[AvidBooklover]

I asked my doctor about it the other day as it would be my next line treatment and I had heard so many negatives. She said she has many patients doing very well on it, with no issues. Or managed ones. Since they know about diabetes issues, they can be more on top of it. My surgeon, who I am still in touch with also said there are many new drugs in development.

[Lolli2020 in reply to AvidBooklover]

Thank you so much!

[BubbyB]

I am sorry to hear about the new METS. My mom started Piqray a few months ago after being on Ibrance for 18 months. Her oncologist prescribed Claritin to help prevent or at least minimalize a rash (which she has yet to get). She has diabetes as well but so far her numbers have been okay. One issue she had was her creatinine numbers were pretty high so she had to stop, get fluids, then restart. After several attempts, she was referred to a nephrologist who said some meds can give a false creatinine reading so they are watching another number. She doesn't seem to be any different than she was on Ibrance. Best wishes as you start this new med.

Hugs and Prayers your way!

Becky

[Lolli2020 in reply to BubbyB]

Thank you Becky! It may be more the spread of the MBC than the issue of taking a new medicine - but still I wasn't looking forward to those two new possible side effects. You've eased my mind greatly!

~Anita

[jersey-jazz]

Dear Lolli2020

Good luck to you on your new treatment and thank God there is such a thing as this new treatment. I sincerely hope that this is the weapon that is effective against the invading MBC.

Frances