Piqray users, what is your experience?
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I am on 300 mg, day 10. This day is the worst. no appetite, diarrhea and 0 energy. I am going to cut the dose to 150 (i take two pills = 300) This is almost as bad as verzenio. left a message for my MO
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Kayelen, today was my 10th day at 250 mg. I feel so much better on 250 than 300. I'm pretty amazed at the difference, but I'm almost afraid to jinx it by saying so. Hope your MO gets back to you right away. Mine had me stop completely for a few days while getting the new Rx. Hope you're feeling better.
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Bliss, I'm glad you're feeling better.
For all of us taking 300mg and hoping for a dose reduction in the future, can you tell us in what way you're feeling a difference?
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Lulubee, at first I only had slight nausea on 300mg, meds helped and I was eating as normal, but by day 8, I was vomiting and had a severe headache that meds didn't help; only vomiting helped it. I had no appetite whatsoever, then just pain in my digestive tract and nausea that meds, Tums, Rolaids didn't help. By day 10, I didn't even have the strength to make coffee. I couldn't eat much at all and just sat on the couch. Called MO for the dose reduction the next day. I felt worse than I ever did on IV chemo. Funny thing, I expected diarrhea, but never had that!
Now on 250mg, I'm still fatigued, but not to the point where I can't function with normal activities. My appetite is not where it was pre-Piqray, but it is much better and I'm eating much more. Still losing weight, I have it to lose, but so far I have not had any nausea, no pain, haven't needed meds once so far. I'm now on day 12. Hope that helps.
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Wow, Bliss, what a train wreck. I'm so sorry you had such a hard time and I hope things stay calmer for you. Thanks for sharing all that.
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Lulubee, your welcome, and thanks. It really was a train wreck. It has been like night and day on just 50mg reduction. Fingers crossed that I continue on this path and that the Piqray's doing it's "magic" on my mets.
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Anyone have experience with using half dose of Piqray? I have MBC and have used Letrazole, Ibrance, Xgeva, and now trying to take Piqray with Faslodex shots. Mets to my bone at diagnosis and now have lesions in my liver. So onto the next line of treatment. I thought Ibrance was bad. Piqray is horrible. I have lots of SE, so many that my ONC had me stop taking Piqray for a week and go on half dose. I was wondering if anyone here has had experience with taking 150mg instead of 300mg and had less side effects? thanks everyone.
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Can anyone tell me whether the Pik3ca mutation is stable, in that it occurs at the initial tumor, and doesn't develop in later stages of metastasis? The reason I ask the question is whether its wise to trust the genetic testing of the primary tumor, or whether a recent biopsy of the metastasis is better?
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kayelen, I did go on 150 mg of Piqray for 3 weeks but the side effects did not reduce. My worst SE were fatigue and skin blisters. My oncologist asked me to stop it.
Husband11, for me the analysis for the PIK3 mutation was done only on my bone mets biopsy. I don't think it is normally done on the initial tumor since there is a standard protocol of treatment that most oncologist follow.
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Husband11,
I agree with S3K5. I believe the mutation is a somatic mutation, meaning that it develops over time. Initial genetic testing would probably not show it. Genomic testing (Foundation One, Tempus, etc.) would. Also, there is some sort of a stand alone test for the mutation that I've read about, but you'd have to as your MO about that one, since mine showed up on both my F1 and Tempus reports.
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Husband11, I developed the mutation post Taxol. I didn't have it earlier when diagnosed with Mets. Piqray is keeping those tumours stable so far, I'm on cycle 17. However I have a new spots developing very slowlywhich at some point will need further investigation that are either a new mutation or are Piqray resistant.
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I specifically asked my wife's Onc about whether a biopsy of her current metastasis would make sense for Pik3ca mutation (as she was talking about piqray), and she said that the mutation typically is present at the initial site, so they could retest my wife's 8 year old breast tumor and get as good of results. I went looking for information on whether that was correct or not, but haven't been able to find any yet. That is very interesting that Pots's experience contradicts that notion. Now I am doubting her (the Onc).
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Husband11,
I would try and find some info on the stand alone test for the mutation. Look at the Foundation One site, because I think they developed it. For some reason, in the back of my mind, I want to say that it's a simple blood test. I'd trust that before going with the original tumor, especially considering what Pots said and what I recollect, as well as S3K5. Should be relatively easy to find out -- probably easier than what you are looking for.
Good luck.
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- Before I went on Ibrance/Faslodex in 2017, the Mets tumours were biopsied in the hopes that I would get into a clinical trial...no P1K3CA mutation. I was on I/F for about 8 months when we saw a progression. My MO at the time suspected that the resistance to I/F was either from an ESRI or P1K3CA mutation. We elected to do low dose Taxol to get rid of it. Further progression post Taxol confirmed P1K3CA. I'm in the BYLIEVE clinical trial arm which is studying the effectiveness on acquired tumours. There’s a growing body of research on this aspect...since 2018 but it is still very new.
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Thanks all. There is nothing quite like hearing someone's personal experience. I think our cumulative knowledge on these boards is far ahead of the average oncologist.
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Time for me to say good bye to this wonderful thread. Progression in my liver. MO has me switching to abraxane. I will have a port for the first time since initial treatment in 2011. And my thinning hair with rapidly receeding hairline will be gone. But I continue to to put one foot forward and enjoy what I have.
Good luck to all of you and may Piqray give you several good months. I am off to have a huge bowl of pasta.
Peace
Mary
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Mary, very sorry to hear your news of liver progression. How long have you been on Piqray? Wishing you good luck with Abraxane. One foot in front of the other... keep on truckin'.
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Anyone have red face reaction to Piqray? I am now on 1/2 dose (150mg) but still getting the SE. Not quite as bad but my face seems to be swollen and red. No rash anywhere, yet.
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Hellos Bliss58 - you have had a very bad experience with Piqray.
My experience with Piqray has been one of nausea until I was put on a nausea pill which work out very well for me, drying off my skin and overwhelming fatigue.
My Doc just reduced my 300 mg (2 tabs) to 150 mg (1 tab) due to high sugar levels in my blood. Did your doc start you at a dosage at 300 then reduce to 150mg?
Today is Thanksgiving - enjoy a tasty Thanks Giving.
Annamaria:
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Hellos Bliss58 - you have had a very bad experience with Piqray.
My experience with Piqray has been one of nausea until I was put on a nausea pill which work out very well for me,drying off my skin and overwhelming fatigue.
My Doc just reduced my 300 mg (2 tabs) to 150 mg (1 tab) due high blood sugar levels-with checking my blood sugar levels again In a week.
What were the reasons your dosage was reduced?
Today is Thanksgiving - have a very tasty thanks giving
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Hellos Bliss58 - you have had a very bad experience with Piqray.
My experience with Piqray has been one of nausea until I was put on a nausea pill which work out very well for me,drying off my skin and overwhelming fatigue.
My Doc just reduced my 300 mg (2 tabs) to 150 mg (1 tab) due high blood sugar levels-with checking my blood sugar levels again In a week.
What were the reasons your dosage was reduced?
Today is Thanksgiving - have a very tasty thanks giving❤️
Annamari
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Annamaria, thank you. I was able to eat quite well yesterday, but it wasn't very satisfying. Piqray makes my tastebuds wonky and mouth very dry.
My blood sugar was 129, but my MO said she's happy with anything 160 or less. It'll be rechecked Dec. 11. MO switched me to 250mg because of my overwhelming fatique, extreme nausea, very low appetite and abdominal pain. One 200mg pill + one 50mg pill is what I take now. Those SEs have abated and now I mostly have low energy, low appetite, dry skin and dry mouth.
I think Piqray may actually be working though I'm fearful of saying so and jinxing it. I had a chest CT today. My lung and liver lesions are stable and mediastinal node is now clear. That's after about 32 days total on it even with a 10-day break. I'm hopeful for shrinkage next time around.
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.Bliss
Sorry about your side effects. While on Piqray, I was given ibs meds and they did help with cramping. I have been on Piqray since May 1st. I had one dose reduction for a few days due to side effects. Mostly I was on 300 mg. I did have mild fatigue and difficulty with appetite. I was strict with my low carb diet (25 to 50) a day. But I did hate it. I have lost 20 pounds on this med and hope they come back.
I wish all of you the best of luck.
Mary
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Mary, thanks. I'm trying to stay lower carb, but not going as low as you've done. I have lost 14 lbs this month, though, but hope it doesn't come back; I've got it to lose! I hope you get yours back though. Had a rumbling stomach today, ate some yogurt that helped calm it. I plan to stay on 250mg for now since it seems to be working and I'm tolerating it fairly well.
Best to you all.
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I stopped Piqray about a month ago. Most of the side effects went away after 1 to 2 weeks of stopping this drug. But since last week I have started losing a lot of hair, actually getting worse everyday.
Anyone experiencing this type of hair loss AFTER STOPPING Piqray? I haven't started any other treatment since I was on antibiotics for UTI.
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Hello Piqray Forum,
I am moving to this drug after 6 months on Ibrance/Faslodex and about 20 months on Afinitor/Aromasin. Can anyone provide tips for combatting the side effects. As we always do when we have to change meds, I am feeling very uneasy. Having read the posts, it looks like this is going to be a tough transition.
Doctor says I will be having weekly blood tests for the first few months to screen for blood sugar and kidney issues.
Appreciate any words of wisdom you might share. The A/A protocol was so easy for me, other than the fatigue...
Thanks and happy holidays to all-
Stacey
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Hello Ladies-
Have a question any and all advice is needed
I was on Ibrance for about 1 year befor it quit working moving on to Piqray and Fulvestrant injections.
After being on Piqray for 4 months my blood test revealed blood sugar at 335- I was reduced to 250mg. Last Thursday. I started the new dosage. And 4 days later,Monday, my blood sugar's rose again with a blood test revealing 335.Doc calls and wants me to stop Piqray new dosage for two days and then go on Metformin and piqray.
Has any one had trouble with blood sugars. If so, what did your doc recommend?
Thanks - Annamaria🎄
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Annamaria, this is a common side effect of Piqray. Many if not most of us are on meds like Metformin to control blood sugar levels. My oncologist told me that Piqray works better and longer in conjunction with a low carb diet. Her preference for Piqray patients is a keto diet, but a diet that high in fat quickly ruffled up my gallbladders issues, so I just aim to eat as few carbs as possible.
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S3K5
I have been off Piqray for about 2 weeks now. I also had an increase in hair loss since coming off Piqray. I thought it might be do to the steriods I was put on, but steriods have not done this to me before. Also I have not started new treatment yet.
Curious,
Mary
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Hello Lulubee
Thanks for you reply.
I start on Metformin tomorrow. Thank you for the tip on low carb diet. I am unfamiliar with Keto - but will look up the diet. My doc hasn’t mentioned anything about my my diet?
Have you had blood sugars as high as 335? Kind of freaked me out- especially when I read about high blood sugar levels and how they could effect me.
Since you have been taking Metformin - has it helped lower your blood sugars and how often do you have a blood test to check your blood sugar level My Piqray dosage is 250.
Annamaria 🎄
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