Piqray users, what is your experience?
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Hey ya'll. New to this thread, but not super new to Piqray. Last July I went on Piqray 300mg and it shot my otherwise normal (95-120) blood sugar to over 500 and started to break out in a rash. Besides that, I was drinking water like crazy, severe diarrhea and nausea, had lack of appetite most days, felt super lethargic, got up 4-6 times a night to pee, felt confused and dizzy. I had no idea that much of this was due to my sugar going through the roof as I had never before experienced that before. I justified the excessive thirst as I did when I was on the verzenio and the dehydration that came with diarrhea, expected the nausea as it's been a regular occurrence for the last 26 months, lack of appetite and lethargy...again, a normal occurrence. In other words, had I not gone in to the scheduled appt 1 week after starting the Piqray, I would have not know the severity of what my body was going through. They immediately took me off the meds and gave me insulin. Two months later and my sugar levels are not back to what my normal has been for the last 56 years. Now they want me to agree to go back on at the 200 mg level and I was wondering if anyone else who had a reduction noticed a significant change in their blood sugar spiking and the rashes. The other alternative they're giving me is Everolimus (Afinitor), of which I will start doing my due diligence once I've finished this post. One more thing I'd like to mention. My diet over the last 20 years has been very moderate (obviously from my normal BG range and normal A1c's over the last 2 years). I am not interested in Keto as our bodies need some carbs to function properly, and I do like to give in to my sweet tooth on occasion and have zero intentions of making myself unhappy by never having a bowl of ice cream again. Any other good ways to reduce blood sugar is appreciated in case of a spike again, should I give this a second shot.
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Snydermom,
Yes there is a very effective way to reduce blood sugar, and I'd do it first off if I were taking Piqray, but it does involve a bit of effort. Intermittent fasting has been shown in trials to be good for a reduction of about 1.5 points in the A1c levels. It also helps with a large number of other things. It does not involve any change in diet, but rather a change in the timing of eating You would want to go into a water-only fast in the early evening, maybe around 6pm, and fast for 12-14 hours. Then eat as you like. I will put some links below. It also helps GERDs for those with that problem, as you go to bed on an empty stomach, and circadian rhythm, heart, many systems. Remarkable results.
The point of the thing is that you give your metabolism a change to burn off what you took in that day. Having done that, what you take in during the day in diet is less important. It would be hard to keep it up if you also try to deprive yourself, you need the energy- the metabolic effects of the fast on its own are enormous. If you get hungry at night, go to bed early, drink hot water, tell yourself you will eat a huge breakfast- its not that hard, seriously..This will help you get your nightime blood sugar levels as low as possible. In addition, in lab studies metformin works on the order of 1000 times better on a fasting cell than on a cell loaded with sugar, so you will get the most out of the meds you do take.It just requires you be organized enough to have that big dinner at 6pm or so, and then switch to water only- (fizzy water is fine too)
https://www.cell.com/cell-metabolism/pdfExtended/S...(19)30611-4
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Hi everyone, I am 15 years out from Dx. I have been on picqray for 21 months. Handling it very well with great results. I did start losing my hair a year after starting. It thinned alot but now it is starting to grow back. At first I was excited but now concerned. I next Drs. appt. is two weeks out. Is having my hair grow back while still on treatment mean it is stopping working? Has anyone ever had this happen?
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wow!
Do you have the P1KCA mutation. I do and am on Piqray.
You are an inspiration.
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Hi everyone! I'm about to start Piqray this evening. I've got meds for diarrhea and nausea standing by, and I already take allergy meds everyday. Thank you to those of you who mentioned the blood sugar issue and symptoms because nobody had said anything to me about that yet!
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Hello, I have just started Piqray and Fulvestrant. There’s a lot of great information on this thread and the Piqray Facebook group. A big THANK YOU to everyone for your wisdom and insight. I feel prepared for whichever side effects may come along but I guess only time will tell. *fingers crossed*.
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Hi ilowen! Did you start today? I'm on day three and nothing to report so far. But it seems like most people don't experience side effects until after at least a week, usually two.
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Hi ParakeetsRule! I had my Fulvestrant shots today and will start Piqray tomorrow so I’m going to be just behind you. It’ll be interesting to see how similar/different our experiences may be.
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Yes, it will be interesting to compare! I'm glad somebody else is starting at the same time.
My schedule's a little off because I started Zometa, Zolodex, and Faslodex (fulvestrant) last Wednesday. Other than soreness from the shots, I didn't notice any side effects so that was good. But I was going to a wedding on Sunday so they told me it was okay to start Piqray this week just in case!
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I would have probably delayed Piqray until after the wedding too. A few days delay isn’t going to make a difference for treatment but could make all the difference for the wedding.
I have very mild soreness at the Fulvestrant injection sites but I don’t even notice it unless I rub the muscles firmly. I took my first Piqray dose after breakfast today. I have various meds in the cabinet to combat the main SEs if they crop up and I’m taking an antihistamine (Aerius) to, hopefully, prevent or lessen the rash. We'll see how the next week goes.
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Well, week one is over. Nothing significant going on yet, just random little stuff. I took a Zofran once out of an abundance of caution but I probably didn't need it. I noticed that I don't have as much of an appetite but that could be stress. The only annoying thing is that my toothpaste is starting to be painfully spicy! Especially the evening brush a few hours after taking Piqray. I bought a "sensitive tooth/gums" toothpaste but it's just less spicy. Is there such a thing as toothpaste with no flavors?? I might try a kid toothpaste if I get desperate but I really don't like the fruity bubble gum flavors!
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Spicy toothpaste? Now that’s an interesting one. I haven’t experienced that yet but I’m only on day 5. Although, I brushed my teeth after lunch today because I had some red onion and thought it seemed rather minty. I’ll have to pay attention at my next brushing. My appetite hasn’t changed but I switched to eating low carb when I started Piqray so every meal is an adventure these days. I actually feel really good right now and contribute that to the new eating plan.
ParakeetsRule, I hope you can find a toothpaste that is palatable. Maybe a baking soda toothpaste
Fasting blood glucose test on Wednesday so we’ll see how my body is reacting in that department.
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I'm convinced now that my lack of appetite is from Piqray. I don't feel stressed out and have in fact felt pretty good overall the last week or so! But I have no interest in eating, even when my stomach is actively growling. Food tastes fine when I do eat it, I just have no desire to eat. And I hate cooking in general so that doesn't help.
My oncologist took a peek in my mouth and said she could see redness on my gums so she got me one of those prescription mouthwashes in case it gets worse.
Edit: Well, boo. Oncology just called and told me my blood work from this morning showed a blood glucose reading of 140, and said mine is usually 70-90ish. They said not to worry yet but they want me to test it at home for the next couple weeks and see how it looks. I hadn't eaten or drank anything before going to the lab so it wasn't influenced by anything I'd eaten. The fun continues...
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My fasting blood glucose level yesterday morning was 5.7 mmol/L (102.6 mg/dl). Just 0.1 mmol/L above the high end of normal. My baseline before starting Piqray was 5.0 mmol/L (90 mg/dl). We’ll see what another week of Piqray does to it when I have it tested again next Wednesday.
I haven’t had any appetite or taste issues to date. No diarrhea yet but things have been a little looser. It’s early days though and I expect the next few weeks could be interesting.
ParakeetsRule, a rise in blood glucose levels is to be expected because of what Piqray does. The key is to try and moderate it so it doesn’t climb to dangerous levels. I have made the decision to do everything that I can to help my body handle it but there’s no guarantee. I have cleaned up my diet, I’m watching my carb intake and trying to get some exercise every day. I’m fully expecting to need meds at some point but am hoping I don’t.
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I feel like I eat a pretty healthy diet already but there are a few things I could cut out if necessary! Other than walking the dog I pretty much stopped exercising after I got my diagnosis but I know I need to start up again. The pleural effusion and draining it makes it difficult though.
My blood sugar testing gear is in the mail and the diabetes clinic already called me to say hello. Never imagined I'd ever be involved with them. Cancer is weird.
Glad you haven't had any appetite issues yet! It's strange for my stomach to be growling and still have no desire to eat. I do feel a little hungry now though so I think I'm going to order my favorite pizza!
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So true, cancer is definitely weird! Walking the dog counts as exercise in my books so don’t discount it. All we can do is what we can do. With all the other things cancer has thrown our way … side effects, your pleural effusion, etc … sometimes it’s enough just to get off the couch and stretch the legs. Hopefully the blood sugar monitoring will give some insight for you.
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I spent all last week being a terrible couch potato, probably from Piqray-induced fatigue. Luckily I had already planned to be off work but I'm a little annoyed because I literally did nothing but watch movies and stare at my phone! Oh well. I've also had random bad evening headaches and I'm not sure why. Two of the medicines I'm on have headaches as a listed side effect but I wonder if it could also be blood sugar related? I started testing this week in the mornings but haven't gotten any bad readings yet. I also just had a clear brain MRI so I doubt there's anything going on up there.
Last night was also the first time I had to run for my Zofran before I got sick! I ate a snack, took my Piqray, and within 15 minutes or so.... yikes. Stomach did not feel good. Luckily it worked quickly and dinner stayed down. And then later on I had to add an anti-diarrhea pill....fun times...
But today I feel pretty good. Good enough to be suspicious, ha. My first two effusion drainings were three weeks apart and now I'm over three weeks since the last one. I thought by now I'd be struggling for air or at least very uncomfortable, but it actually feels better. I've had an annoying uncontrollable dry cough the last few days (usually only if I laugh too hard) and at first I thought it was because the effusion was getting worse, but now I wonder if it's because it's getting better? Draining the fluid causes a cough because your lungs are re-expanding. So maybe that's what's happening? The fluid is leaving?!
I'm trying not to be too hopeful though, and then feel terrible again tomorrow and feel disappointed again.
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you are not dumb. I am. I have just like given up and I don’t even have s diagnosis. I have lost 16 pounds in 10 months. puts me at 94. Not hungry. Cannot exercise I have diabetes then I lose more. . Used to be happy caring. I don’t know what happened to me. I lost my whole family to death in 4.5 years. A lot more crap making me sick to my stomach. I eat to keep on weight. I wish the good Lord will give me a miracle or take me. So miserable. I don’t believe in suicide. I hate living like this though. I am sure you at times feel the same. I don’t know how you do it! I’m so sorry for you and me. We are not dumb
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Parakeets,
Stomach issues were one of the reasons I had to quit Piqray. I also developed pneumonia (caught early, so knocked out quickly with antibiotics). It’s a shame because I have the Pik3 mutation, and I would love to have seen what that drug can do. I don’t know anyone who has tried Piqray and was able to continuetreatment. I’m rooting for you. Hopefully you’ll be ok on it, and get lots of mileage. Sending positive thoughts your way.
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I think the people who are doing well on it aren't posting about it much!
I'm also in a Facebook Piqray group and there are a fair number of people who have been on it for a few years. One person even popped in recently to say she'd finally had progression after five years and was moving on to something else. It turned out she was one of the original trial participants. 0 -
Nothing new to report from my end. Besides some general fatigue and slightly elevated blood sugar, things are going well so far. I’m only a couple days shy of 3 weeks so it’s still early days.
ParakeetsRules, I take it as a positive that you haven’t been feeling the effects of your effusion yet. When I was on ribociclib, I had to be careful to take it with enough food or it would upset my stomach. As time went on, it got better and I didn’t have to be as careful with the foods I ate.
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Hello,
My name is Jane and I am just perusing this thread today. I'll admit I haven't read everything yet. I am on Faslodex, Piqray, and Aromasin. I was dx with mBC in May 2021 and started on Faslodex and Kisqali. After about 6 months I disappointedly had a minor progression so my MD wanted to switch me to Aromasin and Piqray (yes I have the mutation). Insurance would only approve with Faslodex so I'm taking that too which is fine with me. So I started Piqray Dec 30 and on it a month now (with daily Aromiasin and monthly Faslodex).
It has definitely packed quite a punch in terms of side effects but my MD was encouraged that my blood sugar was OK the first month and I didn't have a terrible rash - so she felt we had success in terms of being able to continue. The first two weeks I was hit with a fatigue I've never felt before as well as loss of appetite and weight loss. All of this had me feeling quite depressed.
I will say though that after those first few weeks my energy level is much better (most days, not all) and my appetite has improved a bit. I did then get mouth sores, and then a candida (yeast) infection in my mouth. Those have not helped me with eating and my weight is still dropping a little. I'm doing my best to stabilize my weight with higher calorie drinks, snacks etc. My yeast infection is almost cleared up. Now I'm just dealing with the gastro stuff - yes diarrhea and Nausea that others have complained about.
I would love to see how others are managing this. I feel like my intestines "gurgle" all day long with the occasional bad stomach cramp. Its definitely not comfortable. I don't usually get the diarrhea tho until after I take my Piqray which is in the evening. I then take Immodium which seems to help. Nausea is unprediactable for me. I have compazine and have been taking as needed. But maybe I should take it as a pre-med prior to taking the Piqray. Last night I took Piqray (with food) and felt ok. About two hours later I felt a bt nauseas and took a compazine. Then an hour later I threw up anyway. Ugh.
Any advice on how to better proactively manage the diarrhea and nausea/vomiting?
Thanks all!
Jane
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Welcome! I also started in December and I've had several side effects but none serious yet. One of the first side effects I experienced was loss of appetite, but after losing a few pounds it mysteriously returned 7-10 days later.
Occasionally intestinal issues come and go but I haven't been able to identify a pattern so I don't have any advice for you. They do seem better now than during the first month. If you notice them happening at a certain time, I'd take the meds in advance. The anti-nausea ones in particular are known to work better if you take them before you feel nauseous!
The main ongoing issues I've had are fatigue and mouth sores. I've upped my coffee intake and that's been helping with the fatigue. Not sure if that's the recommended solution but it's stopped that feeling of "must nap now or else". 😂
The mouth sores mostly only bother me when I brush my teeth. Gums are sore too, and toothpaste can be painful. I'm trying to remember to take my medicine for that regularly but I'm not sure if it's helping or if the sore spots have been going away on their own like other side effects did.
Hopefully you can figure something out! You might want to check out the Piqray group on Facebook. It's a lot bigger and busier than the Piqray threads in here.0 -
Hi, Janice54! I'll start Piqray in a couple of weeks, and I see that in July you had been on it for 5 months. How is it going for you? Others on here seem to have problems with nausea, diarrhea, mouth sores, fatigue, etc. I can take everything except throwing up! Yuck! Your 15+ years since MBC is amazing and soooo encouraging! I've been MBC since April 2018, first on Ibrance for 14 months, then Afinitor/Exemestane since then. Recently found a blood clot in my left ventricle, so I'll be on heart meds for the rest of my life, but feeling much better since starting them. This is a journey.
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Still chugging along on Piqray with minimal side effects. Still don't know if it's working though which is frustrating! I have my first scans on March 2 to see if it's having any effect. Also, today in the Piqray Facebook group I saw this information about a possible new drug in the pipeline for breast cancer with Pi3k mutations! It's been approved for fast-tracking by the FDA too. Yay! So hopefully we'll have new options in the future!
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Hi All,
I hope you do not mind me posting here. My mom was diagnosed with Stage IV Breast cancer, but she doesn't feel comfortable using this site on her own so I post for her on here. She's going to be starting Piqray, after Afinitor and Aromasin failed. Her side effects on A/A weren't terrible, but she's a bit worried about Piqray. She's been pre-emptively taking Claritin, so hopefully, that helps. Best of luck to everyone!
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Hi! Does your mom feel comfortable with Facebook? If so there's an active Piqray Facebook group she can join. I don't think you can join in her place, unfortunately. But that's a good option if she does like using Facebook! There are a lot more people posting there than here.
Side effects are common with all types of cancer treatment so she will most likely experience some with Piqray, but most people seem to do fine. Most of them are manageable. When I started they gave me meds for diarrhea and nausea and told me to take them at the first hint of trouble. I haven't had major issues but I've definitely used both occasionally. I also take the generic version of Zyrtec once or twice a day for allergies in general and for Piqray, and haven't had any big rash incidents yet.
Another common side effect is mouth sores and sore gums. That was my most annoying side effect so far but it's gotten a lot better! My oncologist gave me dexamethasone to use a couple times a day (like a mouth wash/rinse) and it seemed to help, but it was unclear if they went away because of the medicine or because they were just fading away on their own. But my mouth is still overly sensitive to regular toothpaste and yesterday I got some samples from my dentist to try to see if I can find a less spicy toothpaste. Ha.
Lots of people also have blood sugar problems. Mine has jumped up higher than normal but so far has not reached levels that require management. They should be monitoring her blood sugar in her regular bloodwork and they may start having her test it herself at home. I got a whole testing kit from my hospital and they told me to check a few times a week in the morning before eating, and to let them know it I ever got a reading over 160. You can also look up symptoms of high blood sugar and keep an eye out for those.
I hope that helps!
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Parakeetrules,
Thanks! I passed the info along to my mom and she will be joining the FB group! The piqray gets here tomorrow. We'll have to wait a bit to see how it's working against the cancer since tumor markers aren't reliable fo my mom. Tumor markers were consistently dropping on A/A but the cancer was spreading!
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I started in December and still have no idea if it's working yet. My first scans will be March 2! I have no idea what my tumor markers look like because my oncologist doesn't go by them either.
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As of 2/10/2022 I have been on Piqray one year. I begged to take a break because the side effects (sores in mouth, tastebuds not normal,
severe gastro issues, hair beginning to thin, eyes are gritty, increased high blood pressure even on meds, increased blood sugar that stays below 300 even taking Invocana, severe weight loss, no appetite because of tastebud change) have totally depleted me. I never feel good and can't get far from a toilet and have lots of pain associated with gastric issues caused by Piqray. After monthly appointment I am off cancer meds until doc reads upcoming CT and bone scans. I will get the tumor marker number back early next week. Last month it had gone up. That CA 27.29 number is the only way I have to tell what might be going on. As far as tooth paste, I started using baking soda on a wet tooth brush. It didn't hurt nearly as bad as toothpaste. For mouth sores I use Triamcinolone Acetonide Dental Paste 0.1%. This was prescribed by my dentist years and years ago to help canker sores. I asked my oncologist to write a prescription for me. It works fast if you put it on immediately upon noticing a sore coming on. It works best for me if I put it on at bed time for sure, and two more times during the day. Now my oncologist told me that he was prescribing it for other patients. He'd never heard of it before. It works.
I don't know where we'll go from here.
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