Piqray Scans

[DianaSav]

sooo month 3 on Piqray..... side effects are minimum! Bloodsugar is perfect! I had my first three month scan Friday and everything came back amazingly well. All lesions are smaller. The pet scan light up everything like by 50 or 60% less. My. Dr is really happy with the results and said I'll be on this meds probably a really long time!!! 🙏🏼

I had my markers drawn yesterday at my follow up, and now they're up which is confusing to me. She did say if the markers go up again she is going to want me to start the xgeva AGAON monthly ( we switched it to every three months) I was just wondering if anyone has had any experience with their markers, trending up, but having amazing results in your scan.

I read somewhere that Piqray can cause markers to be in accurate but I'm not so sure how true that is!

I am feeling amazing and I'm not going to stress about markers but I was just wondering if anyone has had any similar experiences!!!

[Laskia]

My oncologist doesn't pay much attention to the markers as they are not always the most accurate way of assessing progression. I've been on Piqray for 6 months now and am actively trying to control blood sugar with diet and drugs. My last scan was 4 moths ago and although I had only been on it for less than 2 months, it showed stability in bones and some shrinkage in the liver. I'm having fulvestrant injections monthly. I have completely lost my sense of taste and my hair is thinning, but i still hope to be on it for a while. fingers crossed!

I take a supplement called NAC which may help the drug work better according to a study in mice - its worth a try!

[DianaSav in reply to Laskia]

Oh you sound exactly like me except I'm not having any blood sugar issues at all ( low dose metformin) and my scans look great! She was really really happy with.... bones have gotten better and my liver lesion has reduce by 60 percent! Idk so weird

[Timtam56]

Firstly. Yes. Blood markers keep going up. Pain and tiredness going up. But scans stay the same. Which bring me to point 2.

How come your lesions are smaller? I’ve been told that I will never be able to expect my lesions to lessen, or for anything to get ‘better’. My oncologist just told me that the very most she can do is, give me more time and give me quality of life. I don’t understand how people here say that their lesions have grown smaller, NED. I wish I could understand. Maybe I have some crossed wires.

Anyway, tomorrow I have an appointment with my oncologist after having my bloods done today and having a day of scans at the hospital on Monday. But if it’s anything like the last five years, my scans full of state, the same and my CA bloods will have gone up.

PS, I’m currently and still on Ibrance and anastrozole. With one monthly denocumab injections.

[HelenWi]

I’ve been on Piqray for nine months; first scan showed reduction in brightness on all bone mets and the biggest one on skull even disappeared. But my Ca27-29 just creeps up. Next two scans had mixed results, but he’s keeping me on Piqray — still considers this stable. Ibrance didn’t work for me so I think he wants to milk Piqray as long as possible. (I also had three spine mets zapped with cyberknife.) The markers are somewhat mysterious to everyone, I think. I’ve learned not to freak out too much and accept the fact that I’m relatively stable.

[DianaSav in reply to HelenWi]

Ya my markers are on the rise but a week prior my scans were so much better! I was told tumor die off can also cause the markers to rise! Idk

[Mumberly]

I’m on a different medication, but just wanted to say congrats on the positive news with your new treatment plan.

It’s always nice to read good news. It brings hope to the rest of us.

Kim

[RachH20]

hi, late to the conversation but I’m looking for advice on this very issue, 3rd month on piqray and tumour markers CA-15 (breast) are rising. Feeling concerned, due my first scan on this drug next Friday. Hope you are still doing well and things are stable for you x