PIQRAY update

[Kaylab]

Great news. Had another Pet Scan today. Last one was end of June. I am still NEAD. I am officially 2 years MBC. Been on Piqray and fluvesterant since Oct 2021. On monthly Xgeva from the start.

Diagnosed stage Nov 4, 2020. I had 9 years cancer free after my first round of stage 2. I am Er+pr+ and Her2-. Numerous Mets to liver, lungs, spine, pelvis, ribs, 2 fractures in spine. I was full of Mets. Took Verzenio (150 mg for 6 months and then 100 mg twice a day) with letrezole which were my first line treatment for 10 months. Got NEAD after 6 months. 4 months later PET SCAN they saw one 1cm lymph node in chest and some uptake on iliac. Original liver biopsy showed I have Pik3 mutation So now PIQRAY since Oct 2021.. PETSCAN March, June 2022 and Nov 2022 shows no active cancer.

[Joannaaaa]

congrats on your good results

[Kaylab in reply to Joannaaaa]

thank you

[GollyG]

How thrilling! I'm especially delighted to read as I've just started Piqray and tolerating well. Will be happy with stable, can only dream of NEAD. Thanks for sharing,Gill

[Kaylab in reply to GollyG]

thank you. Glad you are doing well on it.

[love2golfwell]

Such wonderful news for you! Praying you continue to stay NEAD on this protocol. Sending you hugs.

[Kaylab in reply to love2golfwell]

thank you, me too.

[Kaylab]

thank you. I want this one to last a long time. Luck to you as well.

[POPS60]

Hi, your post is just what I needed!! I am in a very similar position with regard the mets and most recently in the liver and P1k 3 mutation. I have 3 more weekly sessions of paclitaxel to complete and then I start piqray after Xmas. The information on side affects is scary, but your positive response will help spur me on. So pleased for you to have such good news. I would really appreciate any tips you may have on managing side affects .

Thankyou.xx

[Kaylab in reply to POPS60]

My blood glucose went up after 4 days. So was put on metformin right away. It kept going up over time so now I am no 2000 metformin and 10mg jardiance. It’s now under control. I started Claritin with Piqray because I wanted to head off rash side effect and the Claritin seems to help with bone pain. First 6 or so months was a hassle, I had worse diarrhea and went through food not tasting right. I lost 5 pounds a month for a few months. I moved the timing of all my meds around numerous times until I felt better. Now a year in I have appetite, stopped the weight loss, nausea is slight or controllable. Diarrhea is most on days after fluvesterant and xgeva shots. I am determined to stay on each med as long as possible so I power through side effects. Hope that helps. Let me know if you need info once you start. Merry Christmas and happy thanksgiving

[POPS60 in reply to Kaylab]

Thankyou so much for this information. ... .my goodness that glucose went up quickly didn't it 😳. Good plan with the clarityn , I will definitely do that 👍.Sounds like you have battled through a bit, but got there in the end bless you 🙏. You have given me hope and I will go into it now with less trepidation, although very likely I will have more questions for you again.

Thankyou, and a very Happy Christmas to you too. 🥰

[mariootsi]

How have you tolerated Piqray. It seems most people have issues with it!I have the Pik3 mutation.

[Kaylab]

My blood glucose went up after 4 days. So was put on metformin right away. It kept going up over time so now I am no 2000 metformin and 10mg jardiance. It’s now under control. I started Claritin with Piqray because I wanted to head off rash side effect and the Claritin seems to help with bone pain. First 6 or so months was a hassle, I had worse diarrhea and went through food not tasting right. I lost 5 pounds a month for a few months. I moved the timing of all my meds around numerous times until I felt better. Now a year in I have appetite, stopped the weight loss, nausea is slight or controllable. Diarrhea is most on days after fluvesterant and xgeva shots. I am determined to stay on each med as long as possible so I power through side effects. I am at a good place now.

[hopeoflife]

This is such wonderful and encouraging news! I started my new regimen a month ago with Zoladex + Fulvestrant + Piqray at 200mg. I have my next Pet scan in January. I pray that I might get positive results like you! Thank you so much for sharing!! 🙏❤️👍

[Kaylab in reply to hopeoflife]

good luck. Hope your scan shows positive results

[RLN-overcomer]

Yesss, & yayyyy You, and your loved ones have soooo much to be thankful for. HAPPY Thanksgiving Sister/Warrior/Thriver😇

[Hopeful4Cure]

We are all so very happy for you. Thanks for letting us know. It helps us all and gives hope.

[Kaylab]

thank you

[Mcangel11]

I have to start piqray in 2 weeks and fluvesterant shots...scared to death of this meds side effects have you experienced a lot...thank you