Piqray users, what is your experience?
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I certainly noticed that Piqray was affecting my mood/ brain functions at the 300 mg dose. Once I went down to 250 mg it felt that a cloud lifted and I had more energy, felt more optimistic. We are also living through a difficult time so pick one...both are probably right! Do tell your MO that you feel Piqray is affecting your mood, making you feel more depressed....it is not a known SE however the more we inform Novartis about SE the better.
I suspect you are going into the tougher SE months too....more nausea, fatigue, less appetite, more aches, headaches, cracking skin, thinning hair, GI upset....it’s like the drug has to go through two to three cycles in your system, disrupt everything, make you miserable and then things start to calm down.
I hear you on craving carbs...I do eat some carbs early in the day. I also have found no sugar treats that satisfy the craving. I tell lab whether I am fasting/no fasting for bloodwork....the clinical trial I am on requires fasting bloodwork every three months. My MO is also concerned about how the hemoglobin a1c Numbers are rising so I’m seeing an endocrinologist in November. The challenge isto balance QoL with strict control.
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Starfish- can you have tumor markers or scan done to see how the treatment is effecting the cancer?
Lulubee- what dose are you on?
I’m going to give my 3rd try to 150mg piqray this Friday. I asked my MO to try 50mg than go up but his preference is to try each dose and move to the next according to SE. then give Novartis eval of the dose reduction. Praying for no fevers/rash as I’m apparently hyper sensitive to piqray. Wondering if anyone has warded off SE on 150mg dose and progression?
This is one tough drug
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Starfish, when you say 'numbers are going up' , I am assuming you mean tumor marker numbers? I read on Facebook Piqray group that the tumor marker numbers do not correlate to the tumor burden - many have had increasing numbers but the scans showed decrease in tumor burden, lesion sizes. So even though I am seeing increase in my tumor marker numbers, I am not very concerned (who knows this may change with the next scan!)
About the SE, this is a fairly new drug and not all adverse events are listed. My brain definitely is foggy and my memory is reducing by the day. From today, I'll be reducing my dose to 150 mg from 300 mg and hoping to see overall reduced side effects .
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I"m guessing rising tumor markers could indicate reaction to the drug, too. It confounds me why they don't start with a lower dose, allow the body to adjust and then move up vs the other way round. I was only on Piqray for 8 days before I could no longer eat much. Had to force myself to eat 500 calories. Nausea meds worked some, but not enough. I never felt this bad with original IV chemo. So, now I'm off it a few days and I feel so much better. Will have a Zoom call with MO to discuss reduction. I have the mutation and need this drug to work, but I need QOL, too. No foggy brain, but I haven't been on it long enough.
Anewbreath, hope the restart on 150mg will be good to you this time.
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Anewbreath, I'm on 300 mg.
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S3K5, how long did it take for your nausea to abate and taste buds to recover? Do you take 300mg?
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Bliss, it took about 6 weeks for the nausea and other side effects to subside. I was on 300 mg daily. From a couple of days, my dose has been reduced to 150 mg. The GI doctor recommended probiotics, which has also helped with nausea.
I have cross-posted this on the liver mets forum - my biopsy results from the liver lesion shows that my cancer cells have mutated to triple negative, androgen and PDL1 positive. So that explains why letrozole is not working, which I take along with Piqray. My MO is talking about starting a new treatment plan.
We are still waiting on the genetic profiling results and then onto the new regimen - probably an IV chemo and immunotherapy combo. At present I'll continue on Piqray till I know the next path forward. I think it is still helping to keep bone mets stable.
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S3K5, are you still on 300 mg daily?
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Hi everyone,
Feels like I haven't posted for a while. I did just have a pet scan that showed a significant decline in suv activity for all bone mets☺️, and a mixed results with liver mets. However my tumor markers are raising and I must say I am not feeling great. Lulubee I did relate to most of what you said in your long post.The one treat that helps my sweet tooth is home made whipped cream sweetened with monk fruit sweetener. I throw some cream cheese in it because I like the taste and texture and no carbs. I have an mri of my head this week and will meet with my RO and ask him to review both my Pet and MRI with me. Fingers crossed.
Peace to all
Mary
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Mary, sorry you're not feeling well. Fingers double crossed for good MRI results.
I start Piqray again tomorrow at 250 mg. Hopefully, this slight reduction will be enough that I can better tolerate this drug.
Hello and hugs to all.
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Checking in at the end of week 6, 300 mg dose.
My CA 27-29 dropped 100 points over the past month! I haven't had a single drop in over a year (on Verzenio) so this feels amazing.Blood glucose hit 160 last week so hello Metformin 500 mg/d. After four doses, I've dropped 5 pounds. Icky stomach and diarrhea at first (nothing compared to Verzenio diarrhea, though!) but I'm beginning to feel better in general.
MO had told me to eat keto with Piqray because of the mouse studies. Total overhaul of diet, check. But I'm concerned about pounding my 7 yo bile duct stent with the high fat ratio of keto and I've had some hints of gallbladder anger, so this week she said don't aim for ketosis, ease up on the fat ratio and just eat super low carb. Sigh. Surely there's a cinnamon roll buffet in heaven?
Taste buds are still whacked. Mixed nuts taste like a handful of coins. It's like there's a blank space in the middle of my taste bud spectrum. Appetite is off. Maybe I'll be svelte for the holidays? I took Ondansetron a couple times last week when that morning sickness feeling wouldn't go away, but boy howdy did I ever pay for it: life altering constipation! Ouchy times. So MO dropped my script from 8mg to 4mg. Hopefully things will go more... smoothly.
Still no rash, just super dry skin and a few occasional pimply spots here and there. Claritin daily, about to rotate to Allegra. Mouth feels touchy, toothpaste burns like fire.
In other news, Friday's brain MRI was hellacious. The diagnostic center was busy and I wound up in the dreaded closed tube. Required to wear a Covid mask in the tube (Lord, fix the world!) and they bolted my head down with a cage contraption and strapped big headphones on my ears because of the extra noisy machine, and then... I got slammed with a nonstop wave of full back spasms and leg cramps that lasted the whole time. HELL, I tell you. But worth it: my 4 skull mets look exactly the same as the July scan (3 month interval). Brain is clear and RO doesn't think the mets caused the mystery migraines I had all summer. Whew. Praise the Lord and pass the pie (and a side of Metformin, LOL).
So far so good! Onward.
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Lulubee
I do so love your posts. I do so relate. Since Verzinio, I compare all diarrhea to those miserable days. I am on some kind of constipation diarrhea rollacoaster with Piqray but nothing compared to Verzinio, I even hate to complain. I continue to work to keep my daily carbs between 25 and 50. Agh with lots of complaining. I never thought I would get tired of Dubliner cheese but that day has come.
Mri tomorrow for me. I hope it's easier than yours. I will have to keep my mask on and so far scheduled for the bigger more open machine. You are amazing that you got through that and I am truly happy for your good news!
Peace
Mary
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Lulubee....your MRI sounds hellacious. I found the first 3-4 months had the most erratic SE. My GI tract got very inflamed initially so appetite, taste, nausea all happened.
Bliss....250 mg dose reduction should help with SE, I certainly noticed a difference. My MO will recommend to Novartis that 250 should be the standard coming out of the BYLIEVE clinical trial I’m in.
I’m in cycle 14 and can report that I still alternate between diarrhea and constipation...sigh. While I try to eat lower carb, it isn’t always successful...to make it doable for the long haul give yourself “treats”. There are many diabetic friendly items out there. My favs for an occasional treat are No Sugar ice cream, No sugar Peak Freans cookies, cheesies, nuts, rye bread with cream cheese and smoked salmon, popsicles.....and don’t forget to include an occasional glass of red wine (if you drink). My taste buds are still wonky so I prefer salty things more than sweet. One thing I’ve noticed is that I’m off of fruits/vegetables, jus no interest and no appetite for it ....so I’m having a hard time getting enough. Fibre is also another thing I have a hard time getting enough, it’s like eating sawdust.
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I’ve been wanting to post about my Piqray experience for a while and finally getting to it. It did not go well for me and after two months I had to quit. For me the main SE was very bad lung inflammation requiring me to stop Piqray and use prednisone for a long time. I would like to caution other Piqray users that if you have recently had radiation you should wait several weeks before starting Piqray. I had just completed three weeks of radiation and four days later my MO had me start piqray which was a mistake, I should have waited weeks as both radiation and Piqray can cause lung inflammation. Sadly I had missed a message from another MO I see at a large cancer research/institute telling me to wait weeks after radiation. Kind of a long involved story (isn’t it always with cancer!) but I went on and off Piqray for a couple months not really sure what was going on, told my MO I though I had radiation inflammation but she did not pursue this. I finally got help from the radiation oncologist. I did completely stop Piqray and cannot ever use it again or any drug like it as it will likely cause lung inflammation. Other SE for me included the awful rash, diarrhea, fatigue and almost impossible for me to eat, food was adverse to me, almost nothing sounded good including food I usually enjoyed. My blood sugar stayed ok and I did not worry about carbs, I just had to eat whatever I could. After that I tried just faslodex for a while, no luck there. Now I’m on my second round of Xeloda. And I did decide to switch MOs which was a good decision. I did have a biopsy indicating I do have the PK3 mutation. My main point to other potential Piqray users is use caution and wait weeks if you’ve had radiation treatment.0
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KatyK, thanks for the warning, that's good to know. I'm sorry you've had such a rough time.
I hope Xeloda does you right. It got me to NEAD for almost 3 years-- the only drug that has ever gotten me there. I would go back to it in a heartbeat if only that were an option. Just be sure to take extra good care of your feet and hands!
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Cross posted:
Every time I get chemotherapy, I end up with severe UTI and this time is no different. I guess chemo reduces my immunity and the dormant bacteria flare up. I am taking antibiotics prescribed by my MO but she suggested that I reach out to the infectious disease specialist if my symptoms don't improve. In addition to severe burn, I have nausea, body aches and generally tired.
Does anyone have any proven methods to prevent UTI? I have read about women taking D'Mannose for prevention, but I have not tried it. Any advice from anyone?
I am so tired of one thing after another! Haven't felt normal in a long time.
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S3K5
I am so sorry that really does sound miserable. I. tend to get uti's anytime I have radiation below my naval. Which thankfully is.not that often. I don't have much good advice other than to see if a nutritionist could have some ideas. I wish you can get close to normal soon.
Peace
Mary
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S3K5, I always heard that cranberry juice is good for preventing UTI. I haven't had one in years, but my 88 yo mother was getting them constantly. I suggested she try cranberry juice which my great aunt always swore by, too. She started drinking a glass every morning and hasn't had a UTI since. Not sure its proven or just coincidence. Good luck.
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Bliss, thanks about cranberry juice suggestion. I had tried it once but ended up with severe burning stomach. My GI dr said nothing acidic in my stomach since I have ulcers. I am on proton pump inhibitors for my acid stomach problem.
How are you doing on Piqray? Any severe side effects?
I have an appointment with the NP on Thursday, at that time I am going to ask her if I can discontinue Piqray. The scans didn’t show improvement. Even with my reduced dose, the side effects are too many.0 -
Hi All, I guess am one of the lucky few with minor side effects on Piqray. That is if you consider having thinning hair minor..but seeing as I had Greek hair, even with half of it gone it looks fine.
I was on a 300mg dose but after having received my PET scan results which showed all bone and liver mets stable except for one liver met that had grown 25% (they were all less than 10mm before so I guess it is still small). My doctor suggested I up the dose to 450mg of Piqray every second day. Ever hear of anyone on more than the recommended dose of Piqray? Well now you have!
Anyway it's only been 6 days now so we will see in the longer term what happens. He mentioned wanting to switch me to Affinitor after Piqray.
I felt like maybe we are being to fast to switch meds since only one met progressed (TM's went up too by a bit), so when he suggested upping the dose and getting a blood test in two weeks to check if TMs were still rising instead of switching to Affinitor right away I said yes. I've only been on Piqray 4 months. Fingers crossed I don't have to switch so soon.
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GreekNinja , 450 mg is such a high dose and over the recommendation of the manufacturer. I am surprised that your oncologist recommended this. Glad you are tolerating this drug so far. I agree with you, as long as your liver lesions are stable, it's a good idea to continue on this drug.
I had severe side effects even at a reduced dose. Extreme fatigue and skin rashes were the worst. I was on Piqray for 4 months, the side effects started getting worse only in the 4th month.
When my TM started going up and one lesion was growing (others were stable) my oncologist referred me to the Interventional Radiologist for a microwave ablation of the growing lesion (2.5 cm). They also did a biopsy which showed that the tumor had mutated to triple negative. So my oncologist is planning on immunotherapy/chemo combo, since she feels I may have mixed clones.
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GreekNinja, I'm glad you've tolerated Piqray so well. I'm surprised, too, your MO wants to go to 450. Good luck.
S3K5, today is day 8 on 250 reduced dose and so far so good. This was the day on 300 when I started feeling really bad. I'm still noticing a lack of energy and lessened appetite, but I am eating. I'm losing weight, but not significantly. Hoping it continues on with no additional problems. Having a fasting blood test today to see my glucose level. I am on 500 mg metformin now.
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Checking in at the end of week 7.
Is my hair thinning a little? Maybe? I don't see it in my brush or on the shower floor, but I just feel like I'm seeing more scalp around my hairline?? UGH. I was bald from 2017-19 and just lately got a respectable ponytail going. Great.
After a week on Metformin 500mg, my tummy/gut has adjusted. I've started using a glucometer instead of going in for labs. Blood sugar is confusing though-- one day I eat almost zero carbs and FBG is 143 the next morning, then I scarf down a pile of chips & salsa and an asada taco... and the next morning it's 125. Huh? Makes no sense. But yay for chips & salsa.Ondansetron-- 8mg dose always caused me major constipation. Turns out the 4mg dose stops queasiness without making me weep in agony later. Wish I'd known this sooner.
Still having occasional big D but it's manageable. Nothing like the old Verzenio days so I won't complain. Three cheers for extra long super thin panty pads.
Weight is slowly dropping, a pound or two per week. Hate this low carb diet with all my heart, but okay, I'm not sorry to see my muffin top deflate a little. After 8 lines of treatment and suffering through every side effect in the book, here at last is ONE side effect to my benefit.
Still having muscle spasms. UGH.
Still no rash. Taking Allegra daily.
Still dreaming of cinnamon rolls and loaded baked potatoes and pie, lots of pie, beautiful pie, all the pies of the world.
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Just started cycle 16 today (a cycle is 28 days in the clinical trial protocol). Oct 29 CT scan continues to show tumours are stable....I’m so very happy that tumours continues to be unchanged...it’s like they are “frozen” in size. My blood sugars are bouncing around, saw the endocrinologist on Tuesday and started Glumetza 1000 mg plus daily BS monitoring. Ugh. I have no words of wisdom on what to eat....sigh. I made a Keto mushroom soup today for lunch that was delicious!
lulubee...by month 4 my hair had thinned but never fell out completely. I cut it very short when I could feel my scalp had gotten very tender and it started to grow back in after that. It’s thinning again now but still growing.
For muscle spasms my MO recommended Robaxacet (methocarbomol) overt the counter. Has made a huge difference to my night time spasms....I only take a half pill.
Be wel
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Is hair thinning/loss listed as a side effect?
Anybody here NOT have hair loss on Piqray?
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just started piqray with the falsodex shots. Letrozole stopped working and i've been off Ibrance for about one year. Because of low blood cell counts. my bloodwork tumor markers were climbing so now on this Piqray. Its been about one week and i am very tired, have diarrhea, and no appetite. it took awhile to get use to ibrance but i'm not sure about this one. Its really keeping me down and i have no interest in doing anything. Now i am battling being dizzy. How long have you been taking piqray? I'd hate to think i will feel this way for ever.
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just started piqray and it is not that great but much better than verzenio. At least i can get out of bed and function somewhat. verzenio was the worst!
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Good news on the MRI scan! I can relate on back spasms. I alway get them when I go for pet/ct scan. And we have to wear the masks. Just started Piqray and wondering if I can go through this. But much better than verzenio.
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Hi all
Recent Pet scan had good results which I reported earlier and head mri also good results stable skull mets, reduced bone mets and mixed liver, some leaving some new ones. But RO thinks maybe since Piqray is working so well and liver mets have minimized, I might now be a candidate for radiation to the liver in hopes to extend time on Piqray. So liver mri next week. Fingers crossed.
Lulubee my MO warned me of hair loss before I started Piqray. So I think it's a known side effect. I have started wearing a scarf most days to hide my new receeding hair line.
Seems like many of us had Verzinio experiences previous to Piqray. Yes I find these side effects easier to manage other than being tired of the low carb diet and struggling to stay compliant.
Peace to all
Mary
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My glucose came back as 129 yesterday. MO said she's fine with anything 160 or less. Nothing is very appealing to eat for me, so hasn't been too difficult eating low carb albeit I'm eating more than when I was on 300 mg. I'm also on 500 mg Metformin. Have lost 9 lbs. so far and this is only day 9 on my restart of 250 mg. Crossing my fingers this dose works for me.
Kayelen, are you on 300 mg? I started on that, got 8 days then felt just awful. By day 11 I had no energy to do anything but get out of bed. No appetite whatsoever and had to force myself to eat to take Piqray and Metformin. MO stopped me day 11 and switched to 250 mg. I'm wishing you luck on this drug.
Congrats to others for good and stable scans!
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