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.
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Kaylab
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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
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 .
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
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. 🥰
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.
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!! 🙏❤️👍
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