Piqray users, what is your experience?
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Continuing with my PIQRAY saga, for anyone who arrives here in the future once I've moved on to my 3rd line of therapy. I only took it for a week then tested + for COVID so had to put it on hold. The viral infection may have boosted my blood sugar numbers however I began metformin 500mg XR daily anyway.
Because my creatinine became elevated while on abemaciclib (a reversible side effect), I was given the reduced tablet renal dose package of Paxlovid. The nasty bitter taste was a good reminder to sip some water. Allowingmyself some time off from doing fingersticks, I was 152 yesterday. Still too high.
Thankfully, my glucose level was just 126 this morning and 118 before supper. I'm waiting to resume alpelisib until after a PET scan already postponed once. My oncologist wants to get another read on my liver mets since I've gone more than 2 months without effective treatment…
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vlnrph
I'm so sorry you have to deal with that on top of everything. My liver mets on Piqray was a iffy. Are you having any symptoms of liver mets worsening? I just had scans before I start Enhertu tomorrow (gulp!). I refuse to even look at them when they come in. It's hardly ever good news.
Yes for anyone who arrives here I have moved on as well from Piqray (previous on kisqali & verzenio). It gave me 7 mos of normalcy
and didn't work on all my bone mets (developed base of skull mets affecting my lower chin and jaw) and liver mets. The side effects for myself was minimal. No sugar issues (which was a surprise) and no nausea. I eat Keto anyways so maybe that helped. 0 -
Someone recently said there wasn't much activity here, so I'm popping in with an update. Basically, there's no update and nothing to report. Still taking Piqray and no signs of needing to change it. Just out living my life and only thinking about Piqray when I take my meds each night and usually not even then. It's just another pill to take. Ha. Yes, fingers crossed this excellent luck continues for a long time.
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Good to hear Parakeets is doing well after a full year! Following my unremarkable PET scan a couple weeks ago, I resumed PIQRAY at 200mg with metformin 500mg daily. My fasting glucose was in a decent range around 160 (while minimizing carb intake). Then came the mistake of going up to 250mg.
Being anxious to advance the dose in order to maximize effectiveness, but starting low to try avoiding side effects, I was not prepared for an immediate doubling of blood sugar levels. I told the oncology pharmacist that I planned to do this. Since I was seeing my MD in a few days, I thought it would be OK.
The “routine" lab draw prior to my appointment was 625. That bought me 2 liters of saline IV plus 10 units of insulin. The numbers fell over the next several hours to 533, 474 and finally 345. We were then allowed to leave the 24 hour cancer clinic. My husband was with me & didn't get dinner until 9:30pm…
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As a follow-up to my COVID/Paxlovid saga described above, I found an article written by a doctor (psychiatrist) attempting to get appropriate prescriptions for her elderly parents - https://doi.org/10.1001/jama.2022.23155
It's apparently occurring far too often, according to comments by other physicians. So, if you need to advocate for yourself or someone else, stick to the goal and persevere until you reach it!
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I had a gout attack from dehydration, a low carb diet, and heredity. My husband's podiatrist injected a steroid into my toe which now seems to be keeping my blood sugars high. PIQRAY was on hold again while I started Jardiance.
Then, the endocrine consult set for March 30 was moved up to February 8 after I sent a barrage of myChart messages. UW has scheduled me for a 2nd opinion on the 17th in Madison. I'm looking into clinical trials there but may not be ready yet.
FBG=170-200 the past week however my oncologist didn't seem concerned. She's probably relieved that I'll be followed a diabetes specialist and wants my internist to prescribe the uric acid lowering medication for me - allopurinol?
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Having developed a yeast infection as I ended my 1st week on Jardiance 10mg, the endocrinologist was happy to give me an Rx for the single dose fluconazole (Diflucan) yesterday. I had been using an anti-fungal OTC cream. He also said the regimen for hyperglycemia prescribed by the oncology team is OK for now.
Recent FBG readings have been around 180 however the steroid injection seems to be a factor. The fingerstick HgA1c they do in the office came out at 8.9 after being just 5.1 prior to PIQRAY.
No other adverse reactions but I'm taking 4 extra tablets daily for the side effects of alpelisib…
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My 2nd opinion at UW-Madison was yesterday. The doctor and I had a very good conversation. My husband came along but, not being a science/medicine person, mostly listened. She had reviewed my history in depth.
Her current research involves liquid biopsy for PI3K pathway bioreceptors in patients taking alpelisib. There is also a clinical trial for a new drug if patients have discontinued PIQRAY due to side effects. It is now finishing the phase I dose finding part. It's possible I might qualify for future enrollment.
My hyperglycemia persists however I have not needed to interrupt therapy for 21 days. This is the longest stretch of time I've been able to complete since beginning my 2nd line treatment December 19th. The 1st 6 weeks were a disaster.
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nkb - found this blurb on the internet - How many people does Disney World employ in Florida?There are 77,000 Cast Members throughout the Disney World resort, which makes it the biggest single-site employer in the United States. Among the Cast Members at WDW, 2,500 work in costume design. March 14, 2023
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Tina, that rash sounds nasty! Call your doctor should you get a fever/feel flu-ish. If OTC remedies aren't enough, there are stronger things like prescription triamcinolone or betamethasone & even an oral steroid such as prednisone.
Diminished appetite and weight loss occur in about 30% of patients, according to the manufacturer Novartis. I have dropped 10 pounds in 2 months, eating less and following a low carb diet in order to address persistent high blood sugar.
It's amazing to me that you survived a decade of injections every 4 weeks. My PET scans started showing the scar tissue after only a few years. I always got night sweats from the anti-estrogen therapy but recently those have decreased.
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Thanks to vlnrph for suggesting I post here (cross posted on Clinical Trials and liver mets threads). For anyone with the PIK3Ca mutation, this might be worth asking about. I'm currently in a phase 1b trial for RLY-2608, a targeted PI3Ka inhibitor from Relay Therapeutics https://clinicaltrials.gov/ct2/show/NCT05216432
I'm on the third cycle and had my first CT and bone scans two weeks ago and it seems to be working, bones are stable and liver mets are smaller. TMs dropped within the first month so I was feeling hopeful. I take it twice a day and have monthly Fulvestrant shots. This is my second line after progressing to liver (original dx bones) on Ibrance. My MO suggested this trial instead of the standard Piqray because phase 1A had good results with no comparable side effects. My glucose levels remain normal and no GI issues except within the last week, I've noticed what seems to be reflux (I've never had this issue but will talk to the trial nurse this week) and some fatigue. I was told that since it's targeted, the toxicity profile is lower than in Piqray. Keeping my fingers crossed that it continues to work. Best wishes to everyone here.
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The rash is baaaack: pink blotches all over my arms and torso. I have taken antihistamines twice a day since the first episode, so that may have prevented it getting any worse. It is only mildly itchy.
My MO's blood test reports from 2/28 indicate big jumps in eosinophils and glucose. I have spent half the morning trolling partway trough the Piqray thread looking for tips and reassurance, and during my search was saddened to see posts from my beloved departed breast cancer.org friends, pajim and bev jen.
I've been able to glean from the old posts is that often some SEs diminish if one is able to to tough it out through the first two cycles. I hope that's so. We'll see. I started seeing a nephrologist last year for moderate chronic kidney disease and dread what Piqray might be doing to my kidneys.
Tina, who is now on Piqray and Orserdu
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I've been on Piqray/Fulvestrant for 16 months so far and thought I'd provide a bit of an update. All told, everything is going well and the side effects have been tolerable but I needed to drastically overhaul my diet.
I've never experienced the rash that so many do but I still take an antihistamine (desloratadine) every day, about 30 minutes before I take Piqray which I take with breakfast.
When I started Piqray, I also started eating a ketogenic diet. I believe the diet helped but my blood sugar levels did increase a bit and I started on 500 mg Metformin in month 2. My doctor wants my fasting blood sugar under 7 mmol/L or 126 mg/dl. That worked well for 5 months but then my blood sugar levels started to increase a bit again and Metformin was increased to 1000 mg. Come month 11 my blood sugar levels started rising again and Metformin was increased to 2000 mg. With this dosage, it is much easier for me to adjust my blood sugar levels through diet and exercise. I eat a very low carb diet (more dirty keto at 30-50g net carbs/day) and throw in a treat every once in awhile. My goal is to walk 20-30 minutes 3-5 days/week at a moderate/high intensity, depending on my energy levels. The more I walk, the easier it is to maintain my blood sugar levels.
I lost weight initially but have maintained my current weight for the last 6 months. Eating low carb, I've had to increase my intake of healthy fats to ensure I get enough calories. My appetite is normally fine but there are times when I'll have what I call sudden-onset-ick where I just don't want to eat any more of what I'm eating. I listen to my body but will make sure I have a high fat, low carb snack later if I haven't eaten enough calories that day.
Fatigue is with me every day. Some days lighter, some days heavier. I structure my days around it and let myself rest when I need to.
If I was to provide a couple tips, they would be: 1) drink lots of water throughout the day starting in the morning and continuing through dinner, if you feel thirsty at any time then you are well under quota; 2) if you're struggling with blood sugar, lower your carbohydrate consumption (you wouldn't believe some of the foods that are actually high in carbs) and be as active as you can be.
Cheers.
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Wow Ilowen, it would be great if I could get at least a year on this med. My blood sugars are better and a recent PET scan confirmed stable bones/lungs. However, the MRI last week showed more and larger liver lesions.
Since the comparison was to November's imaging but I didn't settle into PIQRAY until January (due to genomic testing, COVID, etc.) is this really progression?
Maybe growth occurred late last year & is now being held in check by alpelisib. I really don't want to change treatments. Tina, I hope your rash is resolving.
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The rash has come and gone three times since I've started Piqray.. That was just a month ago, but it feels like a year. And the rash turned out to be the very least of my problems---so far.
I've lost my appetite and fifteen pounds. I can't go out with friends or enjoy what I love because I have no energy, and I can't be far from a toilet, preferably my own.
If this is quality of life, forget it. I'll call my oncologist tomorrow. This drug is not for me.
Tina
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The rash has come and gone three times since I've started Piqray.. That was just a month ago, but it feels like a year. And the rash turned out to be the very least of my problems---so far.
I've lost my appetite and fifteen pounds. I can't go out with friends or enjoy what I love because I have no energy, and I can't be far from a toilet, preferably my own.
If this is quality of life, forget it. I'll call my oncologist tomorrow. This drug is not for me.
Tina
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Tina, I'm so sorry to hear Piqray has been so hard on you, but as our mutual friend and fanny packer pajim used to say, there are other tx's to try. (I miss her and I'm sure you do too.) Hope your next tx is kinder to you and allows you to do the things you love again. Best wishes, Jo
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I haven't been here in awhile because I've had nothing much to report. I've been on Piqray since December 2021 with minimal side effects. The worst was the first few months but after that it's calmed down and the main issue is fatigue. I've noticed that driving in particular seems to exhaust me! Not short drives for errands but anything 45-60 minutes or more.
I've also noticed that being dehydrated has a bigger effect than before and I have to make an effort to drink enough water during the day. I'll be so annoyed with myself because I'll feel like crap and feel like doing nothing but laying down, and then I drink a glass of water and I'm like a wilting plant coming back to life. Haha. The problem is remembering to drink a lot of water or tea all day long and then stopping long enough before bedtime that I'm not up every 2 hours to pee. If I don't drink enough water I'll be dying of thirst at bedtime.
The other lingering side effect is the loss of about 75% of my body hair. Weird. And maybe about half my head hair? Hard to say and it wouldn't be noticeable to most people because I had thick hair before. But I cut it short because it wasn't growing well and looked thin, to me at least.
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I spent Friday afternoon in my oncologist's treatment room getting two liters of saline and will return Monday for an infusuni of iron.
I quit the Piqray and reconsidering my future with this oncologist. I just have to get myself on a more even keel to think stright.
Tina
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When I first started Piqray, I think the first couple months, I did experience some rather spectacular diarrhea. I tried Imodium but it only slightly helped if I ate the pills like candy (which I didn’t like doing). I tried Metamucil once a day and that solved all my problems. After awhile I stopped the Metamucil and things have been fine since with only the occasional return of a “once and done” episode.
I echo what Parakeets said, water has been my lifeline. The more I drink during the day, the better I feel. The less I drink, the crappier and more tired I feel. I aim for 3-4 litres a day. I always have my water bottle with meTina, I hope your next treatment is easier and kinder to you.
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I also hope Tina can find a more comfortable treatment and perhaps a new oncologist. Thanks to parakeets and ilowen for emphasizing hydration. The wilted plant image is quite appropriate in my experience.
After messaging my 2nd opinion MD & learning that my local doctor agreed with my interpretation of the gap in MRI assessment not representing true progression, all 3 of us are on the same page! Imaging again in 8 weeks.
My tumor marker continues to drop which is encouraging. We took a week long car trip during which I drove several hundred miles and did OK, turning in early most nights. Difficult to stay low carb when away from home.
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MRI earlier this month described “innumerable liver lesions slightly increased in size”. Looking at the images with a new (to me) oncologist last Friday, I said it looked like Swiss cheese. He didn’t disagree and mentioned Xeloda as my next step. A Guardant 360 test is pending.
However, my tumor marker is steady. I will discuss what to do with my 2nd opinion University of Wisconsin doctor once the liquid biopsy report is available. Although my blood sugars jumped last month with my husband in the hospital for 2 weeks, they came down later.
He was diagnosed with hepatic abscesses. I told him only one of us should be having issues with that particular organ so his better heal quickly. I gave an IV antibiotic daily but drug fever developed & the medication was changed after a 72 hour readmission.
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I took my last dose of PIQRAY Friday, entering a 2 week washout period before starting a phase II KEYTRUDA & fulvestrant clinical trial at UW-Madison. My endocrinologist said to stop Jardiance+Januvia but has me continuing the metformin. I lost 30 lb since the 1st of the year eating low carb, etc. My wedding dress from 4 decades ago probably fits me again!
For anyone reading here in the future, know that FiberCon tablets (calcium polycarbophil, found in the laxative section near Metamucil/psyllium) can also work to control loose stool. Two daily at lunchtime were my routine while on Verzenio for 4 years. I didn’t get diarrhea or rash from alpelisib but the blurred vision from hyperglycemic episodes was annoying.
Once capivasertib is approved, I might consider trying that ATK treatment, which is part of the PIK3 pathway if it makes sense. This point may be my sole opportunity to try an immunotherapy approach with a checkpoint inhibitor. I’m told the final spot of 47 in the study is being held for me. Other similar agents are only for those diagnosed with triple negative BC.
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Special note here to bird1978 who started a new PIQRAY topic: I sent a private message to urge a dose reduction. I hope she comes here to share her situation so all our comments are in one place. That will help people down the road know their options. Due to the mechanism of action, insulin/diet alone are probably insufficient to treat hyperglycemia from this.
My academic medical center has a knowledgeable oncology pharmacist on staff who helped me navigate the difficulties of alpelisib. Even though trained as an RPh, I was not objective about my own case. A PharmD who has done a postgraduate residency could be invaluable in suggesting a course of action to our doctors, rather than give up on this treatment.
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I just received a two week compassionate allowance of the 300mg. My insurance and Novartis are still fighting it out on the copay. I expect to hear something Monday about a copay card through the company but at this point I'm not sure my employer's insurance company or Novartis will give in enough for this to be affordable for me. I started the two week dose today and I appreciate all the help on this forum. I am definitely keeping an eye out for hyperglycemia, rash and the digestive issues.
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I may check out the FB thread as this one doesn't seem very active. Holy cow the blood sugar thing is no joke on Piqray. The first week my fasting was 180 mg/dl which my MO was not too concerned with. By week 2 it was 225 mg/dl. I'm now week 4 and I am regularly over 300. I check my blood sugars twice daily and tonight it was 514 mg/dl. I am drinking water all day long and my PCP just started Jardiance in addition to the 500 mg Metformin I am on. Hopefully that begins to work. It appears that Piqray is helping my LC as my breathing has returned to normal and I don't want to quit if that's the case but there has to be some way to get these sugars under control.
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You said it emac! The medications now in clinical trials are designed to be better tolerated. I was determined to be successful with PIQRAY but had to stay at 200mg due to the hyperglycemia. My vision was blurry with blood sugars over 300. Diarrhea occurred when trying to push metformin over 500mg twice a day.
Jardiance helped however I needed 25mg, after starting at 10mg. Take it in the morning (as described in the TV ad) and be vigilant about cleansing. I developed a vaginal yeast infection prior to realizing this.
My endocrinologist also put me on Januvia and would have kept adding drugs except imaging indicated possible progression so I had to look for a new line of treatment.
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Thank you vlnrph. I appreciate that. I am currently on Metformin in the AM at 500mg and my PCP started me on the 10mg Jardiance but said we may need to go to the 25mg. I will definitely keep up on the hygiene too. It warned of necrotizing fasciitis in the nether regions also and I want no part of that😳 We'll see. I'm new to Piqray and so far it does seem to be working so I am willing to try battling these sugars to make that happen.
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I know this thread has been quiet for a while, but I'll take a chance. My Guardant 360 report just came back positive for the PIK3 mutation. My MO told me that a new drug was just approved last week for an alternative to Piqray. She agrees that Piqray can be really tough. I've already lost 15 pounds (from around 130 to 115) due to the mets to my esophagus. I don't want to lose any more weight.
Any insight or ideas? BTW, my first report two years ago did NOT show the PIK3 mutation - just the ATM.
Carol
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Hi Carol! I have an appointment next week with my MO. I'm really struggling on Piqray. I think the argument I'm having in my head is whether or not to rock the boat as it has kept me stable since June of this year so I'm going on 6 months. The caveat to that is that my blood sugars are exceptionally high. I was started on Metformin, then Jardiance both of which are at max doses and recently added Rybelsus (which is an oral form of Ozempic). I've lost 70 pounds since June 2023 and am at a point where it's not healthy if I lose much more. I have frequent bouts of nausea and vomiting and fight dehydration. I also have a very low bar for feeling full so it's hard to keep up with fluid intake and food. So the debate is do I give up on a line of treatment that is working or tolerate the GI side effects and side effects from all these diabetes meds? That's what I am hoping to get some guidance on. Given my progressions earlier this year I hesitate to give up or lower the dose if I am currently considered stable. I don't know if any of that helps. I've only had one genetic testing on my original breast cancer tumor and it was positive for the PIK3 at that time.
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