PIQRAY???: Is there anyone out there... - SHARE Metastatic ...

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PIQRAY???

Justme153 profile image
11 Replies

Is there anyone out there who when they took PIQRAY didnt get side affects from it???? And what dosage did you start at?? If you did get some side affects how long did you stay on that dosage and if it was lowered what dosage did they lower it to??? And did the side affects stop when they lowered it????

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Justme153
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HelenWi profile image
HelenWi

I had the rash but didn’t lower dosage. I took Claritin and applied some cream that was prescribed and it went away after about a week. I also had a strange feeling in my mouth— like I ate an unripe persimmon - but it gradually improved. Something I didn’t notice right away was that my hair got thinner.

GollyG profile image
GollyG

Hi there, I've been taking Piqray for a year now. Most side effects have subsided (nausea, diarrhea, appetite loss) but blood glucose still needs careful management. Onc hasn't ever suggested a lower dosage from what I assume is the standard one of 2 pills every day. Are you on it now? Gill

ClarenceO profile image
ClarenceO

I’ve been on 300 mg/day w Claritin for 7 months. Luckily only a few side effects (thinning hair, low appetite, some fatigue, high thirst). Manageable rise in glucose. Very effective so far.

BluHydrangea profile image
BluHydrangea

I have been on Piqray for 16 months and doing well. I was terrified to start from all the horror stories— but I’m stable for 9 months now. The stomach issues are real. I had an adjustment period when I couldn’t eat much— but am doing fine now. Plus side effect— lost some extra weight.

I wish you the best on this line of treatment.❤️

Justme153 profile image
Justme153 in reply to BluHydrangea

Thank you I see the doctor tomorrow i was thinking of refusing it . How long did the stomach issues last about? Did you get the diabetes ( hypoglycemia) not sure of spelling🤔

Justme153 profile image
Justme153 in reply to BluHydrangea

BluHydrangea also i wanted to ask you if you follow any special diet to avoid the side effects of PIQRAY!

LDR1 profile image
LDR1

I’m on it and have had minimal side effects. Mild diarrhea about once a week and a little hair thinning. Otherwise feeling quite well. My first scan results were mixed (some grew, some shrank) so they’re giving me a little more time on this to see what happens.

Dragonfly2 profile image
Dragonfly2

hi!I just started on Piqray after a lot of considerations…after IBrance failed I briefly considered Xeloda but my ONC gently urged the targeted med for PIK3CA mutation. Reading all the responses to your question was helpful! I have been taking Claritin for 3 years as it helps with bone pain..which is apparently good for Piqray rash as well. My hair had recovered during the 2.5 month washout period when I had radiation. But it doesn’t worry me much.

The digestive issues have already started…but so far so good! I am wondering if it matters WHEN you take your dose…is it better at night or with breakfast ? I’m taking it with breakfast…but it’s good to know that one has a 9 hour window to move the dose….i have an evening wedding to attend…I’d like to know that I can manipulated the timing…or should I just take Imodium and not worry…🤷🏼‍♀️

Experience is sure helpful! Best wishes to all !

Justme153 profile image
Justme153

Hi Dragonfly2 after i did all this info collecting on Piqray my oncologist through me a curve ball and decided Verzenio would be the better option. I didnt handle Verzenio good at all. So im now in a holding zone and waiting to begin Ibrance. Im hopping this med will be kinder to me.

Dragonfly2 profile image
Dragonfly2

I just read your last reply…oh gosh! Looks like your cancer has mutated if you are going to IBrance….i wish you well…it was a good med for me though I had to manage the dosage to control low neutrophils… now I’m on zoiarsy for 22 pills…it’s all manageable…best wishes!🥰

Justme153 profile image
Justme153 in reply to Dragonfly2

Hi Dragonfly ya they said i have Esr1 and Pik3ca mutations. I have taken 10 pills as of today. How long where you on Ibrance before your neutrophils dropped? Thanks for your info😊

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