Piqray users, what is your experience?
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pajim, sorry you're experiencing the vomiting. it started for me around day 10 and finally by day 14 i was booted from the trial. the only difference is that i wasn't allowed any drugs to help with that. trial was in early days. good luck, i hope they can maybe give you something stronger.
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I have succeeded in not vomiting a second time. Each afternoon somewhere between 4 and 5:30 I start coughing and I really want to throw up, but I've started taking a Zofran before 4:00 so it hasn't happened.
Of course the rib pain is back, now on the back side of my right ribs. LOL. Dig out the oxy again. I cannot get a handle on the symptoms here. They seem to come and go. I'm really hoping they are all from alpelisib as opposed to the cancer doing it's thing.
I'm supposed to go in on Wednesday for the works, including the Faslodex shots. Will call on Tuesday to see whether I really should, but we sort of need the blood draw. As of this week they won't allow anyone to go with you which is making my DH nervous. I need a wheelchair and I can wheel myself so it should be OK.
Hopefully any and all of your SE symptoms have cleared up, wink wink nudge nudge.
Pam
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Other question related to rush: how does this develop? Have several spots on my face right below my eyes. Anyone with similar complaints?
Thanks.
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Julian, I've had two kinds of rashes. The first was an all-out allergic drug rash. It started on my belly and quickly spread to everywhere. Stopping the drug stopped it.
The second kind I had twice. It was first on my belly and tops of my thighs and looked like striations. Seriously -- like stretch marks. After a few days it went away on it's own. Only to come back on my upper back, which also went away.
MO says people get all sorts of weird rashes with this drug. Usually a couple of days drug holiday solves the problem.
Are you taking an antihistamine? If not, Zyrtec. 5mg is ok (10mg sends me to sleep).
If the rash spreads you need to report.
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I have been on piqray for a month with no side effects. It has been a relief so far. My express script messed up my order. My last pills were taken March 19. My new order won't be here until March 24....I hope. So I am off of piqray and today I break out in a rash in spots randomly all over my body that itch. What the heck???soaking in a epson salt bath right now. Going to try some allergy meds when I get out or should I go with benadryl?
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Rash 4hrs later is gone. Bath or allergy meds worked. Yea!!
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Janice54, I will be starting Piqray soon and am greatly encouraged to hear you've been taking it for a month without SEs...til that rip roaring rash/hives!! Glad the remedies worked! Continued good luck with this treatment.
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So I can't take it anymore, I'm asking to be switch to something else . It sucks cause this is working for me except for the throwing up.
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kimchee, I'm so sorry to hear this. Wishing you well and sending a virtual hug (( ))
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Kimchee, that's too bad but I totally understand how you feel. I'm dealing with some nasty bouts of nausea myself. I did not take my pill this morning (it would have come right back up anyway) and won't take it tomorrow either. See if a couple of days off straightens me out.
Best of luck with whatever you switch to!
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pajim, please refresh my memory as to which cycle you’re on? When did these SE effects start? Are you still on 300 mg? Sounds like a new cluster of stuff to contend with the longer we stay on this drug. Sigh..and here I was thinking/hoping it got “easier” as we went along
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I'm on about day 25. Do you consider a cycle to be 28 days?
I threw up the yogurt I'd managed to eat for lunch. Sigh. That's it. I just reported in to my MO. We'll see what he has to say. I'm hoping he has some strategies here.
My cancer is advanced enough that this may be from cancer not from Piqray. It could also be that one or more of my electrolytes are out of whack. Guess I need a blood draw.
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Well talk to doctor today he agrees I need to switch . I think if I do something else for awhile I hope I can go back on later. I can't live like this , throwing everything up . I even tried a high power patch to stop it and it didn't touch it . Hope it works out better for you all . God Bless
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kimchee, pajim, I am so sorry to hear about all the nausea and vomiting you've been suffering with. I can't think of anything more miserable than constantly throwing up. I hope your next treatments will be effective and much kinder to your bodies! Plse keep us posted and feel better soon!!
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My MO prescribed Zyprexa. Drug name is olanzapine. It's actually an anti-psychotic medicine. Which created room for many good jokes. [no offense intended to people who really need the drug to help their mental health.]
Anyway, it's working like a charm. I have trouble in the evening so I take it about 2:30 in the afternoon. Two days in -- no nausea, no vomiting. Yay!
Cause of the stomach issues are unknown. Electrolytes are fine. It's either the cancer itself or a Piqray side-effect.
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I will check with my doctor on that . Thank you for posting
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pajim, I'm so glad to hear that the Zyprexa is working like a charm to relieve your nausea and vomiting - yay!! Thanks for sharing.
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Pajim, So glad to hear you got some relief! A girl can't keep throwing up her yogurt for long. What dose of Piqray are you on?
Janice, glad your mystery rash disappeared as quickly as it appeared and hope you got your next cycle of pills without any more problems. Two thumbs up on your lack of se's!
Intothewoods, How are you holding up? Hope you are able to stabilize your blood sugar, that sounds very rough.
I restarted Piqray a week ago at 150mg after 41/2 weeks off. So far, so good. Lipase was still high (185 last lab) but steadily headed in the right direction. Have been back to a normal diet for a week, so hoping that doesn't send it back up. Finally feeling like myself again and back to doin'.
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Jobur, I'm so glad you are back to eating. Back to meds too I guess.
I am off Piqray. TMs are still rising. My MO and I have had the second third of THE talk. Going to have the last third of it most likely tomorrow. He's offering Taxol if I want it but if I were 20 years older he wouldn't offer that much.
I will say that three days off the drug and the palliative care team putting me on steroids I feel a whole lot better. I'm up and walking with my walker. Nausea is gone. Except for the coughing at night you wouldn't really know I'm this sick.
Don't any of you let my experience with this drug influence yours. For me it was a last-ditch effort. Apparently Piqray does a lot better for people who haven't had as many lines of therapy as I have. I've just gotten to the point where all therapies kick my ass.
Hugs to everyone!
Pam
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hello again everyone,
Is it common to experience delirium after disrupting piqray for some days? This is the case since taking piqray for 3 weeks (now 4 days off). Stopped because of nausea was too much to eat..
Thanks,
Julia
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jobur, It's good to hear from you and that you are back on Piqray and feeling like your old self. Hoping for Lipase levels that stay on a downward trend.
pajim, that's a tough place to be even with feeling better. Sending love and peace to you as you and your MO come to an agreement about the best course whatever that is.
As for me I'm still challenged by the blood sugar. My morning fasting numbers are in range but the lunch and dinner ones are not even though we are increasing the a.m. long lasting insulin dose and after consultation with a dietician. So much for lots of spare time with covid 19 stay at home orders- between meal planning and prep, the BS checks and insulin shots it feels like a full time job. I'm waiting for a call from the diabetes tam phamacist as I type. At least I'm down to four shots a day. My weight continues to worry me too-I'm not sure how much more I can lose. The dietician said I wasn't getting enough carbs or calories and if we have to lower carbs I don't know how I can get near the amount of calories I need.
If it's not one thing with us Piqray ladies it's the other: nausea and not being able to at all or not being able to eat enough with food to try to stem weight loss.
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Hi everyone, I will probably be switching to piqray next month. After a year on Verzenio, my markers are misbehaving. And frankly, my gut is just about worn out from it.
Pajim, I had not heard that Piqray doesn't work as well in heavily pretreated patients. Is this a thing? Like a widely held assumption? Piqray will be my 8th line of treatment in 10 years. I guess I don't really get my hopes up about any of them at this point-- I feel like it's a big win if I can get a year out of one.
My genetic testing indicated that it's a better match for my mutation profile than Verzenio... so... onward we go.
What's out there after Piqray? I've got a lot of life left in me but at the same time I'm afraid I'm getting to the end of the research pipeline.
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Well, the drug hasn't been around long enough for anything to be "a thing". But all the patients in the trials were less pre-treated than you and I. I doubt anyone knows.
But Lulubee, there are several things left that I can think of: CMF, Doxil, Carboplatin (or Cisplatin), gemcitabine, navelbine. There's a phase 3 trial of IMMU32 going on right now. And whilst I suspect there's a hold on starting some Phase 1 trials right now, they will be restarted in the fall.
It appears that you are getting a year out of each drug. So plenty of time and drugs left. Plenty.
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pajim, I'm sorry Piqray hasn't worked for you. My heart goes out to you...having “that" conversation must have been tough. Holding you close in a hug.
Jobur, glad you’re able to get back on it. Ugh what a haul.
On the clinical trial, we work on cycles...every 28 days. It has helped me figure out what month I'm in and what may be coming for SE. One of the clinical trials saw that Piqray works better on acquired P13KA mutations, not sure about pretreatment. I found the first 2 cycles were the very worst. And you don’t know what your SE will be until you are right in it. So for the newbies, take the Claritin for sure, watch your blood sugars but don’t obsess over them, not everyone gets high sugars right away. Mine were fine (but creeping up slowly) until now, starting cycle 8. Last week I had to take a 5 day break in Clinical trial to get them under control with Metformin 500 mg. Restarted Piqray with dose reduction to 250 mg, not what I wanted to see but it is still keeping tumours stable.
Interesting list of what other drugs to try....I guess it depends on where the progression shows up.
Be well
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Julian1, I have not heard any reports of delirium after discontinuing Piqray. Hope you are feeling better or getting help if you need it.
IntoTheWoods, I am so sorry you are having such a struggle with high blood sugar and weight loss. It does indeed sound like a full time job checking blood sugar, injections, and trying to plan and make meals that will keep BS low and still try to supply you with enough calories. I know you have a great medical team in place, but the day to day stuff is still such a challenge. I hope you get a great response to this tx that will make all these troubles worthwhile.
Welcome lulubee! I agree with Pam, this drug hasn't even been out for a year yet, so I don't think there are any widely held assumptions about it yet. I hope Piqray will be easier on your stomach, but I'm sorry to tell you that has not been the case for me. A year on each tx sounds good to me! Congrats on 10 years, that is a long time to be dealing with MBC.
Pots, I wouldn't worry about that small dose reduction. Fingers crossed it will help banish a horseman or two! Interesting that your BS has started acting up after so many months. Hope it will prove to be a short lived trend.
Ah Pam, Your news just plain sucks. I'm still hoping your mo will pull a treatment rabbit out of the hat and replace part 3 of the talk. But I am glad to hear you have a good palliative team on your side that's got you feeling better. Hope pain is under control and you are able to get some rest in spite of the cough. It's tough to know what to say, but you are in my thoughts every day.
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Thanks jobur. We've put a stop-gap plan into place. The idea is to keep me going long enough that the movement restrictions will be lifted and people can come say goodbye.
It's all a bit surreal. I'm not really ready but I'm not not-ready if you know what I mean. There's not a lot I can do about dying. It's going to happen whether I like it or not.
You all hang in there, you hear?
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Pajim, thank you for your kind and reassuring response. I'll probably get switched to piqray next week at my monthly checkup. Not looking forward to the possible blood sugar stuff but I won't be mad if this yearlong bout of diarrhea comes to a stop. UGH.
I am so sorry you're at the crossroads. I prayed that you will be filled with peace and comfort in the days ahead, and that your mind will be lifted above all pain. After living on nonstop treatment for a decade, enduring a dozen surgeries for BC, and coming within a couple hours of dying in ER twice, I find I really don't fear death anymore. Sometimes it takes my breath away to think about the prospect of waking up in heaven in a body made new and whole. Wow. Just... wow.
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pajim, my heart goes out to you. I don't think there's a harder juncture in life to be than where you are. I get what you mean about not really being ready but, at the same time, not not-ready. I hope that being off of these strong, beastly drugs, you'll find yourself with a better QOL and able to enjoy the simple pleasures of life as much as possible. Sending light and love to you.
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This feels like a difficult place to add to this thread as many of us learned from other threads that dear Pam has died. She was so generous with her story and her words were always helpful to me.
I began piqray last night and feeling neverous for a good result after the most lit up pet scan Of liver and Bone I have ever seen.
I am wishing everyone peace on this extraordinary time.
Mary
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