Starting Piquay this week

[Marmee8128]

I've been on Verzenio, Kisqali and now Piquay and Fulverstrant staring this week.

I have a mutated cancer now and that's the reason for the change. Concerned about side effects.

I did very well on the Kisqali.

[Hazelgreen]

Welcome to this site, Marmee! I hope you will find your membership here rewarding as we all experience MBC so understand each other's concerns.

I'm glad you did well on Kisqali which I'm currently taking. How long were you on it?

Is your new mutation on the PIK3CA gene? I had a liver biopsy last spring which indicated that I had that mutation. However, my liver enzmes have all remained in the normal range ever since so my oncologist is happy to have me remain on the Kisqali/letrozole combination as long as my tumours don't grow. I keep telling him that my age (77) means all parts of me are slow-growing.

I have read about the side effects of piqray so understand your concern. However, other members of this forum have indicated that they tolerate piqray well. You could read their comments by searching for them on the top right of this page (where it says "Search Health Unlocked").

Best of wishes,

Cindy

[Marmee8128 in reply to Hazelgreen]

Thank you for the welcome!!!! I was on Kisqali and Letrozole for almost a year.. Jan 2022 to the end of Nov 2022. I had joint pain and fatigue but other than that I was able live pretty normally.

Yes I just found out through Tempus testing that I have the PIK3CA gene.

Thank you for directing me to the comments section. I'm a bit on edge about this change but you have to do what you have to do. Tomorrow is my Chemo Teach and I like to have information so that I can have questions ready.

Best Wishes and Hopes for your journey also...

Cindy R.

[Hazelgreen in reply to Marmee8128]

Nice to read another "Cindy"... mine is short for Lucinda...

[Marmee8128 in reply to Hazelgreen]

I love your 'full' name, mine is just Cynthia.😀

[Hazelgreen in reply to Marmee8128]

I was named for my maternal grandmother who was "Ida Lucinda Dempsay". I was only given the second two names. I never met her as she lived from 1868 to 1936. My mother was the third youngest of her 14 children.

There are other very nice Cynthias on this site!

[Marmee8128 in reply to Hazelgreen]

I love family history and it's especially lovely that you share your Grandmother's names. I've found many nice ladies on this site...it is so helpful as I start this new phase.

[GollyG]

Hi there, I started Piqray 3 months ago after progression on Ibrance and the discovery of the relevant mutation. It's given me digestive issues I didn't have before and my appetite has decreased but otherwise I'm managing fine. I changed from Letrozole to Fulvestrant at the same time so it's hard to know what's responsible for what! Scan later this month so fingers crossed. Best, Gill

[Marmee8128 in reply to GollyG]

Thank you! I was also be switching from Letrozole to Fulvestrant along with the Piquay. Your reply gives me hope that I can handle this new drug. Fingers crossed for great results on your upcoming scan. Best Wishes...Cindy R.

[TammyCross in reply to Marmee8128]

Fulvestrant is much easier than letrozole - no aches and pains in joints, but pain in the butt! There is a lot of info on here about how to get fulvestrant injections. You kind of have to take charge because it is often done incorrectly -- at least American nurses don't know how to do intramuscular. (Some hints: it must be done slowly, in hip not butt to avoid sciatic nerve, warm it first...)

[Marmee8128 in reply to TammyCross]

Thank you soooo much. I was sort of panicking about the Fulvestrant (after my panic about the Piquay LOL). I printed out what you wrote as a reminder.

[TammyCross in reply to Marmee8128]

I learned from postings here to warm the syringes in my armpits or between my thighs. Made a huge difference. The nurses liked it, too, because it is easier to inject. (They supposedly bring it to room temp, but it needs to be warmer.) Nothing to panic about. Can't say about Piqray.

[Marmee8128 in reply to TammyCross]

I appreciate all the tips...I'm waiting for the call to come in. Much easier now that I have people with experience that have gone through this. Thank YOU.

[GollyG in reply to Marmee8128]

Thanks, and all the best with it!

[Adele_Julia]

I’ve been on Piqray for 13 months with steady scans. Most side effects for me were:

1) Decreased appetite. I lost an enormous amount of weight. 25 pounds and now need to eat small meals and protein drinks around the clock. If you lose your appetite, have your onc prescribe Maritrol which is a synthetic marijuana like pill. Makes you hungry !

2) Spike in blood sugar - glucose. Piqray by design raises your glucose. Some have gotten diabetes as a result. My oncologist prescribed Metformin and Jardiance to lower glucose levels.

3) Mouth sores. Problem was solved when I started tucking Piqray into veggie gel capsules and swallowing without it touching the inside of my mouth

4) there is a great Facebook group formPiqray. Just search form a link on Facebook

Curious to know how long you were on Kisqiali. Much success !

[Marmee8128 in reply to Adele_Julia]

Thank you Adele! You gave me some great information. I was on Kisqali for 11 months. I did really well on it. I love the idea of putting the Piquay in a veggie capsule. I am going to check out FB groups also. Stay Steady! (with your scans)

[Adele_Julia in reply to Marmee8128]

My pleasure ! Here’s a screen shot of the Facebook Group !

Screen shot

[Marmee8128 in reply to Adele_Julia]

Many thanks!

[Marmee8128 in reply to Adele_Julia]

Hello Adele...I was searching for the empty veggie gel caps...do you at all remember what size you used? I dont have my Piquay yet (thinking this week .. soon) and I wanted to have it ready. Thank you, if you dont remember I understand.

[Adele_Julia in reply to Marmee8128]

a.co/d/7vDaWX6

[Adele_Julia in reply to Marmee8128]

I copied the Amazon link !

[Marmee8128 in reply to Adele_Julia]

Got it...they are in my cart! Thank YOU

[mariootsi in reply to Adele_Julia]

Thank you for all the info on Piqray. I have the mutation too so it's in my future

[Rbeth]

I have been on Piqray for over a year. I have type 2 diabetes for which I take Pioglitazone 45mg, Tradjenta 5mg, Jardiance 25mg, Victoza daily injection.

I had a gastrojujunostomy due to cancer closing the opening between my stomach and intestines five years ago. I have painful bowel movements that travel up my intestines and cause pain for hours. I have a palliative care doctor in Rochester NY and am getting a second opinion at Memorial Sloan Kettering Hospital in NYC later this month.

For the diabetes, I see Dr Flory at Memorial Sloan Kettering. He specializes in treating those patients who get Diabetes from medication. He monitors me by my Freestyle Libre I wear. I live 300 miles away from Sloan. If you want a world expert you can contact him. Dr Flory works with my local oncologist. She is pleased to work with him.

I have an oncologist at Sloan too.

Please let me know how I can assist a sister. Happy New Years to all who suffer from this insidious disease and their loving families

Reenie

[Marmee8128 in reply to Rbeth]

Stay strong and hopeful. Hugs to you and yours this New Year. Thank you for sharing your story and your information.

[Steph8713]

Hello! I've been on Piqray for 2 years now. At first, I had mouth sores and body rashes but that went away after the first month. Then decrease of appetite, lots of diarrhea, and high blood sugar. I take Metformin and Januvia to level my blood sugar, and also Famatodine for diarrhea. Other than that, it's worked very well and happy to be on it. Good luck to you!

[Marmee8128 in reply to Steph8713]

Thank you so much for the encouraging report of how Piqray works for you...I am waiting for my injection to get scheduled and then I'm in. I am so happy to hear that you've had good results for two years and counting!