Piqray users, what is your experience?
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So I saw my onc today, and she asked me to try it again at a reduced dose. So I’ll be starting again tonight on 1 pill and see how it goes. Fingers crossed that it works this time.
I always take my meds at dinner time
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My latest CT scan at the end of 3 cycles shows that the two nodules have shrunk about 30%, tumour markers CA15-3 down to 170 from 200. Everything is trending in the right direction! The SE are certainly there but not as nasty as month 1. Today it’s some diarrhea in the morning and fatigue rolling in this afternoon....nothing is so bad that I can’t keep doing the things I live doing, maybe just not as easily as before. I take my pills in the morning with breakfast.So hang in there ladies!
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Welcome back booboo! Fingers crossed this time is more manageable.
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I saw my first advertisement for Piqray on T.V tonight. ( project runway).
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Yes, I've started to see these too. I wish big Pharma would spend less on these ridiculous ads showing how happy people with metastatic disease are and lower their damn drug prices instead!!!
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Hi all! Yes I start on Monday or Tuesday whichever I get home. Go in on Tuesday for the second set of Fas shots. The current CT is not good. Mets everywhere (lung, liver, bones, sigh). Of course I haven't had any treatment for three months so what else did I expect?
Anyhow, will report back in a week or so and in the meantime hope you are all doing well and killing the little cancer buggers.
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njgirl13 - if you are getting shots tomorrow, you will be taking Piqray with Faslodex, not letrozole (which is a pill). Please be sure to read the first post on this thread https://community.breastcancer.org/forum/8/topics/... for tips on getting the shots. It helps alot.
booboo1 - Happy to hear you are still with us! I hope you have a better experience with the reduced dosage and can hang out on this thread for a good long time. Please keep us posted and remember the se's seem to get better with time.
Pots - Absolutely thrilled to hear your good results! Also glad the se's are becoming more manageable as the cycles start to add up. The ability to continue doing the things that make life worthwhile is so important.
Pajim - Hope you had a really good trip to SF. I'm so sorry to hear your last scan results, it must be very disheartening, but I know you will hang tough. Since those "little cancer buggers" have been having a party while you recovered from surgeries, hoping Piqray and your old buddy Fas will be like the cops coming to bust up that party and send them all packing. How is the walking going?
Best wishes to all~
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Pam! I have lost track of what you have tried lately- what is it that is not working?! thought you were going to do PARP inhibitor?
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Hi Curious! I was on Halaven for all of 2019. Well, through early September when I was to have a three week break. During those three weeks, my left hip broke and they were afraid the right one would too.
Long story short I spent a month in various hospitals and am rehabbing bilateral hip surgeries. Which made my three week break a three-month break. And I was doing great (up to a cane with assistive-free training walks) when I went off to San Francisco. I had a lovely time but three days in my right thigh started to hurt (a lot) so we bought crutches. Overuse injury, pretty sure. Not to mention that since we went wine tasting it severely restricted which pain meds I could take. LOL. Pain meds or wine? Hmmmm.
So back to the walker. Now resting/heat/ice to see if I can get better. My laptop is applying heat to my thigh as I type. See the physical therapists on Friday. Hoping they can help. I'm pretty annoyed.
Took my first dose today. Does everyone take the pills at breakfast? If nausea is a problem I'm wondering whether dinner would be better.
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BevJen: I am glad to see Ibrance has dropped that "New Normal" claptrap and now have "living in the moment". More honest. But the costs are crazy stupid and I cannot see the justification.
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Pam, So now its Piqray and you have the PI3K mutation? Hope that works really well, there are some on that combo for a couple years in the trials
New and better CDK inhibitors should be coming along, to pair with the SERDs, so use the Piqray to train the cancer back to estrogen-dependence- good luck!!!
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Pajim, I also started today. I am taking at breakfast also. It seems to be the only time that I can be consistent on. Booboo1, I am glad you are taking the reduced dosage and trying it again. Pots - glad to hear that your numbers are going down. I did see a post on another thread that some people have been on this drug for years. I am taking mine with Letrozole. Njgirl13 did you start today? Let's hope we all get to 6 cycles like Jobur and the symptoms settle down. I did take the Loratadine the day before like the pharmacist told me. Is anybody else taking some type of antihistamine for the rash? Good luck to all. Lisa
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Pajim, So sorry to hear you are doing the one step forward and two steps back dance. I hope you will be back to just the cane after some R&R. I take Piqray with my evening meal, but heartburn has been an issue for me. I don't eat breakfast, so not an option.
Mediclisa, Cheers and down the hatch with your first dose of Piqray. In my (limited) experience, the first month is usually the most challenging in terms of ses on a new tx, so hang in there!
njgirl13, How did your 1st Faslodex/fulvestrant shots go? Hope you are doing okay.
Nice that there are several gals starting at once so you can compare notes. Hoping you all do well on this drug.
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Good morning, Piqray ladies! I've been watching everyone's progress with interest as I have just finished my first month of this new drug. I was hospitalized for acites and a bloodclot for about a week after my last drug failed and was off everything for about 3 weeks while awaiting my biopsy results As a result my tumor markers skyrocked and things were looking a little grim. Biopsy results showed mutation, so I started Piqray right away. I wanted to let you know that after one month my tumor markers dropped from 1300+ to 600+ and my bloodwork was the best it has been in months! I just started month 2 today. The only SE I have experienced is some diarrhea in the last few days, dry skin and, of course, fatique. Hoping to be able to report that things continue to improve and hope the same for all of you.
Best to you all.
Kathy
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Well it's day 3 and now I have questions, LOL. Each morning my stomach has been getting more upset so today I took Zofran. Sort of helped. I've decided to try a bigger breakfast tomorrow. Maybe need more than cereal to cushion the drug? Thoughts on that? The upset lasts until I eat lunch after which it seems to stop.
Yesterday I had a blood draw for the Faslodex shots and my glucose was up over 200. (On day 2? Really?) NP says to monitor every day and ping her if the monitor says more than 200. So I figured out how to do this (diabetics have my sincere sympathy) but the monitor said 140. Huh? Anyone know why it might just around that much? I have a semi-dry mouth which is one of the symptoms of hyperglycemia.
So far this is more immediate SE than I've ever had for an oral drug. Normally it takes a while for something to happen. And normally I have a cast iron stomach. Guess I've finally found a treatment which hits me. So long as it also hits the cancer. . .
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Pajim,
My husband is a diabetic and he takes his blood sugar at least once a day if not more. What I've gleaned is that the timing of the test affects the numbers a lot. He takes his in the AM before he's eaten or drunk anything. Sometimes he takes it later in the day as well. If you are digesting food (as in taking your blood sugar later in the day) your number will go up -- it's just a function of your body.
Hopefully they gave you some decent instruction on how to use the glucose meter as well as when to use it? If not you should ask.
Good luck.
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Well, I tried but did not conquer! PIQRAY kicked my butt to the point where my onc agreed, for now, to put me on something that will address my bone mets immediately. She is starting me on Abraxane; I start the infusions on Dec. 23rd. I told her I would be willing to re-try PIQRAY after we get the tumors under control. So I may be back. Of course, I’ll be back without hair, but that’s ok.
I hope the rest of you have better luck with this drug
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Aw Laurie, I'm sorry. I hope Abraxane does the job.
BevJen, sounds like I should pick a time and stick to it. I got zero instruction, LOL. Pretty typical. I see them in person in two weeks -- we can figure it out then if need be. Meantime the NP (via e-mail) wants me to use a steroid mouthwash to prevent mouth sores and take prescrption strength Protonix. Like Jobur has she thinks the stomach 'upset' could just be GERD. I'll give it all a try.
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Pajim,
If you have time to google a little bit about how to take your glucose readings, I'm sure that the meter manufacturers have some info online. Time of day and time after eating affects your blood glucose -- that much I know. My husband's meter keeps a record of readings, but he also keeps his own chart with date, time of day, and reading. And I'd call them out on not explaining to you how to do these readings. I'm sorry you are having to deal with this.
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Thanks! Choosing time of day before a meal seems like the best. Now its just a matter of remembering, LOL.
I did find a regimen which stopped the nausea. I added three factors though, so I don't know if I need all three. Or whether my stomach is just getting used to it. But I take a Zofran and 2 Pepcid about 10 minutes before breakfast. Then I eat more than cereal. Right now it's grapefruit, banana and an English Muffin. That seems to keep away everything but a twinge or two. Which makes me feel a lot better about this drug. . .
The pharmacy didn't have the meds my NP wanted me to take (sigh) so I just made it up for the time being. And if it works, that's good enough for me!!
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Pajim,
You should check about grapefruit with Piqray. I think that you are not supposed to eat it because it makes the drug stronger in your system -- just like Ibrance.
Good luck.
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Hi BevJen, I read the label and didn't recall and contraindications, and neither the pharmacy nor the MO/NP said anything but I went back to look.
You are correct. It's totally hidden under "CYP3A4 inducers". Which includes grapefruit. Grrrr. But its not even mentioned in the info for patients. Now I'm rolling my eyes. I'll ask.
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Pajim,
Sorry to burst your bubble, but I figured that it was probably in the same class of drugs as Ibrance. Plus, my MO and the hospital pharmacist talked to me about switching to Piqray at some point because I have the PIK3 mutation, so I thought I remembered reading about the grapefruit thing. I don't think it really hurts you -- we had this discussion on the Ibrance board -- but I think it enhances the side effects of the drug which could make for difficult times.
Good luck.
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Hi Baywitch, glad to hear you are doing well with minimum side effects with one month in. Yay on the tumor markers decreasing. I'm sorry pajim on your nausea issues. I am 6 days in and haven't had any side effects so far. I hope it's working - seems silly to hope for something to show effectiveness. Hopefully, it won't hit me at once next week. Fingers crossed. Njgirl13 how are you doing with your first week? Hopefully, ok. Jobur still doing ok - you must be on cycle 7. Hoping for good results for all of us. Stay warm - it was 13 below this morning. Had to go on a ambulance call brrrr. Lisa
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I also have the PIK3CA mutation. Just wondering has anyone tried Baicalein, a widely used Chinese herbal medicine. I read in a few other posts that Baicalein induces apoptosis and autophagy of breast cancer cells via inhibiting PI3K/AKT pathway in vivo and vitro. Unfortunately I'm having difficulty posting these articles/research studies. I may add to my supplement regimen. Just seeing if anyone else jumped on the bandwagon.
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Those of you who are bone only Mets- how did they do the test to check for a PI3K mutation? is this a simple one test blood test or a foundation 1 type test?
Thanks
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Hi Nkb, the "approved with the drug" test is blood. They draw and send to Foundation One. The report was kinda weird -- I didn't get to read the whole thing and am planning to ask for a copy. But Foundation One tests for all the mutations whilst they are looking for PI3K.
Apparently about 1/3 of women have the mutation, which is pretty high. I consider myself lucky since I never have whatever it is you need. . . of course we'll have to see whether the drug does anything for me.
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Hi All,
Do s anyone know how long PIQRAY stays in your system? I couldn't find this info. anywhere.
I am still having respiratory issues, and wondering if it's just PIQRAY working its way through?
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booboo1, I'm sorry this is still affecting you. I found a site that states: “symptoms can last for several months or longer after treatment ends". You might want to get your respiratory issues checked as a side effect is pneumonitis. This just sucks. Good luck. Lisa
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Thanks Lisa. I am going to get a chest X-ray tomorrow, so we’ll see what happens.
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