Piqray users, what is your experience?
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Thanks for responding! I'm going with Piqray/fulvestrant and starting Friday. I've read all I can, will start with claritin tomorrow, and have supplies for diarrhea etc on hand.
How are you doing with side effects?
BTW my MO and I have finally come to conclusion that I'll do Piqray, and if it doesn't work, try Keytruda next as the TEMPUS results say it would work for me.
Good luck to both of us!
K
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Hi Kitkit,
I don't know what treatment is right for you, but I've been on fulvestrant (falsodex) since October of 2020 and Piqray since February 2021 and while no one likes to get shots, especially in your buttocks, there is only mild pain at the injection site as with any other injection, which can be alleviated with massage or the use of a heating pad. I find that the loss of my dignity hurts worse than the shot...LOL. Anyway, I wish you good luck in your treatment decisions.
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I will soon be joining the Piqray club. I was on Ibrance/Faslodex/Xgeva for a little over three years but I had slight progression back in March. After much testing it finally came back that I have the PIK3CA mutation. The doctor is putting the orders in now for Piqray/Faslodex/Xgeva. As you all know I am scared of starting a new drug wondering how the side effects will be for me. Are any of you having an easy time on this drug? Have any of you been on this a long time? I know it's relatively new but I'm just wondering how long it's been working for some of you. Thanks for any knowledge you can all give me.
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Jackie There are two separate Piqray. threads. The other is under the latin name which escapes me right now.
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snooky1954...thanks for your reply. Yes, I looked at the 'Alpelisib' thread and that one is even way less active than this one. That kind of dismays me because to me it means there are not many on this drug or they have moved on already. I was hoping to get substantial time on this drug.
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This is a newer drug so there are probably less people taking it. There’s also a Facebook group for Piqray users (search for “Piqray and those with pik3 mutations support group”). I have been on Piqray since February 22. Started at 150 dose and now at 250. It has affected my glucose levels but I anticipated that might be a problem so I worked with an endocrinologist from the beginning. He set me up with a continuous glucose monitor, which is super helpful. I take trulicity 1.5 once a week and one dose of insulin every day. I am feeling well. No other big issues.
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Thank you for your reply and advice Latte123. I appreciate it.
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Hi All,
I failed on Piqray after about 4 months. Been off it for almost 4 weeks now and I am having really noticeable hair loss (thinning?) when I brush my hair. It is not falling out on its own, ie: the chemo experience, but there is no denying that a good amount of hair is on my brush post brushing. Anyone else experiencing hair loss/thinning? Wondering how bad this might get?!
Hope all still on the drug are doing well. I was so disappointed that I got so little time on it. My biggest issue was the skin rash. Nothing but steroid cream helped make it tolerable.
Best,
Stacey
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Interesting ASCO 2021 update from the SOLAR-1 trial: A subgroup of about 30% of patients were able to get long-term benefits from Piqray-Fulvestrant. For this responder subgroup the median PFS was 33.5 mos (range: 28 months to ongoing...). Obviously it would greatly help if they could identify some biomarker(s) to better predict who is likely to benefit from this regimen.
https://meetinglibrary.asco.org/record/198300/abst...
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Thanks for posting this interesting paper. I’m in the BYLIEVE clinical trial which is also gathering biomarker info on alpelisib. I’m encouraged by the PFS numbers for the LT group, I’m on month 21.
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Hi JACK5IE,
I failed both Ibrance & letrozole and Ibrance & falsodex (fulvestrant) and had progression of disease to my liver in January of 2021. I was placed on Piqray and falosdex on February 4th and have not had any side effects with the exception of diarrhea, which could be related to the low-carb diet I started prior to starting Piqray in order to keep my blood sugar within normal limits, which has worked so far. I also take Zyrtec at night to ward off the rash, which has been working and in addition, it also works as a sleep aid (I have approx 30 mins before I'm fast asleep).
My CA 27-29 was 873 prior to starting Piqray/fulvestrant/Xgeva and dropped to 585 after the first 2 weeks, then 263 at 6 weeks, then 168.6 after approximately 12 weeks and at the end of May was155. I've been on Piqray 4 months now and am doing really well on this drug. I'm hoping it continues to work for me.
I joined the Piqray FB group a while back (thank you to a BC.org member/friend, who told me about it) and the people on there are also very caring and inspirational. Last Friday, I saw a post regarding having been progression-free for 5 years on Piqray and since it was only approved in the summer of 2019, I looked at this person's earlier posts and discovered that she was in the original clinical trial for Piqray. She isn't cancer-free, but progression-free is awesome too! Its a really great group of women and that's probably why both Piqray groups on BC.org have less activity.
Good luck on Piqray! Join the FB group and stay positive!
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Hi Pots,
21 months - that's great!!!
Thanks for sharing!
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Hi Ladies
Looks like I'll be joining you. Onc apt this a.m. Wish me luck.
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Hello All,
Starting Piqray tomorrow after a short 4 cycle stint on Ibrance.
Major progression while on Ibrance and Zometa.I am hoping that the fatique level is way less than what I had with Ibrance.
Thank you for all the helpful tips.I have a glucose monitor, Zyrtec and Imodium on stand by.
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Hi Ladies
It seemed like it took forever to get a delivery of Piqray.
Can anyone provide how long it took for any side effects to appear? Do we know how long it actually takes this drug to start kicking the butt of cancer cells?I start the drug tomorrow , but had scheduled a Thursday to Monday get away with friends. I really thought I would have a few weeks under my belt by now.
At this point it is looking like I probably should back out of the get away.
Thank you!0 -
I started this TX three days ago. No SE's to report, I know., and I agree, days is not a long time,
Best to All
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Thanks Snooky1954!
I cancelled.
There just is not a lot of feedback out there from Piqray users.
Not out there on the web either!
I know that I always felt better when I looked at the message boards and saw what others had to offer and .. that some have been contributors on this site for quite some time. Because of that, I will try and provide any major roadblocks or successes while on this drug. I feel that we are all in unknown territory here.Very curious to see what my tumor markers will be at the end of July. They went from 200 and 300ish in January, up into the 2000s and 3000s in June.
Hopefully they will start to slide back down. We shall see.
Best and brightest to you all
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I have been on Piqray for four months. Started on a low dose and am up to 250 now. I will get a Pet scan soon to see if it’s working. For me, the major side effect is high glucose, which is a common side effect, and it started right away. I had some experience with hyperglycemia from a previous drug, Eribulin and had an endocrinologist to help me with that drug and now Piqray. I take trulicity and insulin To lower the glucose. Most helpful has been a continuous glucose monitor to track my glucose numbers and a helpful endocrinologist. Another common side effect is a rash. To prevent the rash I have been taking Claritin in the morning and Zyrtec at night. So far, I had a small rashon the inside of my elbow that went away quickly.
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Thank you Latte123!
All these hints and experiences helps and informs us all. It seems like skyrocketing blood sugar is a common reaction, but one that can be managed. I ate my first pills (300 dose) with a bowl of spaghetti. Ha-ha! That probably will not happen again.
The tip about Claritin in the morning and Zyrtec at night is a good one also!
I was going to buy a bottle of Imodium caplets just in case the big D hit. Low and behold, you can only get a blister pack because they are being abused, 😳I hope that your upcomingPet scan show that this drug is doing fantastically for you!
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Hi ladies,
I’ve been on alpelisib (Piqray) for 24 cycles. (1 cycle is 4 weeks). SE vary from person to person, and over time. There is a very active Facebook community which many of us follow that provides information about SE and what to expect. I encourage you to join it. That said, I am happy to answer any questions too. For me it took several weeks for a SE to show up, the first one was the rash. I had to stop Piqray in order to resolve the rash and took a daily Claritin once I started it again. My blood sugars weren’t a problem until month 9. Fatigue, GI issues, diarrhea all became bigger SE by month 3 and I’m on a bunch of drugs now to manage my SE. My best suggestion is to be prepared for SE but not fearful that you will have a nasty time on this drug, some can’t get past month 3-4 while others like me are still trucking along, managing our SE. I’ve had one dose reduction which also helped with SE. I take Glumetza to control blood sugars and eat a relatively low carb diet. My next CT scan is July 8 which will tell us what has changed, if anything.
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Thanks so much Pots!
Seeing that you have been on this drug for 24 cycles, gives me encouragement.
I especially like your suggestion to be prepared, not fearful.❤️
So much of this journey is taken one step at a time.I found the Facebook group, and have a pending membership
Hoping that your July 8 scan has good results!
Until then, stay cool! Hope that nasty heat wave you were experiencing continues to go away.0 -
Has anyone had trouble getting their blood sugar under control? Mine spiked instantly. I started with Metformin and that isn't helping. So then the endocrinologist started me on 20 units of insulin. Now he has upped it to 28 units. But only one injection on 28 with no real change. Only lowering by a few points. I am also getting full brain radiation and have zero appetite.
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jACKIE So sorry for what you're going thru. Your scaring me, my OnC gave me my pills with no instructions whatso ever. Nothing about BS spikes or anything else. I've been on Piqray for 10 days. I have slight confusion but that might be from heavy duty meds. I lookd up the systems of high BP,
Cur ious said to do night time fasting for high BP so I've bee following that. No one even mentioned a a monitor to me. This is my last ditch effort, the last tX they can give mre Sorry I can't be of more help
Prayers for you
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Snooky, they are supposed to be checking your blood sugar at the MO office. I would call them on Tuesday and demand a blood test. Are you urinating more, dry mouth, any other high blood sugar symptoms? Confusion is definitely a symptom. Not trying to scare you but mine spiked instantly.
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I am on day 7. I bought a glucose monitor to check fasting level every morning. One day at 148, every thing else below that. I was told to limit carbs to under 100 mg a day. I also have been intermittent fasting, stopping food from 6 pm to 10 am next day.
I was not prescribed Metformin, and don't have my next complete blood panel checked until July 22. My ONC from Hillman said at some point I might need it.
I was pretty darn tired and weak for the first few days, but I feel like I am getting stronger.
And I actually think my bone pain is decreasing. No confusion from the meds, just my normal “ mean and surly" disposition shining through.Jackie5IE, how long have you been on Piqray?
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Vernal, I have been on Piqray since 6/10. My first non-fasting blood draw was a week later which was high. Then my first fasting was a week later and was in the 300s. I have been working with an endocrinologist ever since but this high glucose is having a hard time fighting against Piqray. I'm getting very concerned.
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JACK5IE, I feel your concern at the rising numbers.
Since you are new to this drug, maybe you are in process of finding the right balance between dosage and what is needed to keep the glucose level stable and in range. I am hoping that is the case. Reading back through some of the posts in this thread, there have been some who had does reductions to help with side effects.
My heart is with you. This journey is one step at a time, as it seems the direction you travel can change quickly.
Please keep us posted.
Wishing you the best.0 -
Vernal, thank you so much. Along with brain radiation and the blood sugar I am also dealing with double vision in one eye. It's been an awful time for me. I can barely eat and even drinking can be difficult at times. I also have nausea, vomiting and occasional diarrhea. It's a mess.
I was thinking of a dose reduction. I am going to ask that my endocrinologist contact my MO directly for them to talk about this.
I'll keep you posted. Thanks so much.
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Hi to all the ladies who have recently posted. Jackie my next ONC apt is this Fri which will be 2 weeks from when I started the drug. Are they suppose to check BS more often than that? My vision is also changing (not sure when this started) but I had cataract surgery 5yrs ago, it's been sharp and clear 3 ft out and now it isn't. I've been seeing fine expect for needing reading glasses.
I've suffered depression, panic attacks, general constant low anxiety and OCD Which I've been on meds for for over 20 yrs. But see I never know which SE's are from that or the cancer itself or from the current TX.
I think maybe the confusion is caused from my three sons (unintenatly) because they all have differing views about where I should be living. (I', 67 and live alone) I do have Home Health come in for Cleaning. I can get them to come in more often for personal hygiene and the cooking should I need it.
Besides what's listed at the bottom of my info, I've also been on A/A and Havalen both failures. I've been on so many treatments in 4 years (Taxal did work but Onc stoped it cause of neuraphty which he was concerned would be permeant.
I have lots more I'd like to share but it's getting hard to type.
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Hi. I am on day 8 of Piqray. I am experiencing some nausea and fatigue. My blood sugar is okay so far. I've read through other posts and I appreciate everyone's insight. Hoping this works for a while and without harsh side effects!
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