Piqray users, what is your experience?
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Question for anyone taking Piqray after Verzenio... I've been on V + Fas for 17 months and it appears to be losing effectiveness. My MO has said several times that "anything we go to from here is going to be harder to tolerate." Naturally that's got me pretty scared because I've been on many lines of treatment and frankly V + F has been plenty awful.
Is Piqray worse for you than Verzenio?
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Hi lulubee
I have been on Afinitor plus AI, Xeloda, Verzinio plus faslodex, lynparza plus femara (and zometta then xgeva). I am now on Piqray plus faslodex. For me it is much easier then Verzinio.i do take Allegra daily to prevent rash and I eat a very low carb diet to keep blood sugars with in normal range. I have had occasional GI upset on Piqray but nothing like Verzinio. It also has reduced my tumor markers substantially and I feel physically better.
I hope this is helpful good luck to you.
Peace
Mary
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I’m no longer a piqray pioneer. 13 doses and $5000 Later.... moving on to Afinitor and Aromasin.
Good luck everyone. The diet and antihistamines are the secret. I also heard you should walk after each meal.
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Zills, Sorry you did not have a good experience with Piqray. I hope A/A will treat you better.
Janice54, I have now been on Piqray for a full year. I got pancreatitis last winter and had to reduce dose from 300 to 200mg, but most of my time on this drug has been uneventful (in a good way). I have been lucky in not having trouble with high glucose, don't know why. Liver mets have been stable on CT scans. Happy to hear you are going on 5 months on this tx and doing well. Hope it continues for a good long while.
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A couple of updates on my wife:
1. She's had these horrible mouth sores for the past week. She's tried OraJel, baking soda, Chloraseptic, etc. Finally her MO prescribed a steroid rinse. Anyway, after a LONG week of pain and barely being able to talk at times, the mouth sores have finally started to dissipate. Thankfully.
2. Even on the 500mg Metforim her blood sugar was stable from last week at 168 again. As such, her MO diagnosed 1000mg of slow release Metforim. We'll see how that works.
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BLmike
So sorry to hear about the mouth sores. I hope they stay away. Good to have the info about the steroids mouth rinse, thank you.
My good thoughts go out to you and your wife.
Peace
Mary
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At two weeks my blood sugar is steadily increasing, and I have started to get rashes on my feet. The dr has started me on metformin 1000 mg/day and has referred me to a dermatologist. l have been taking Zyrtec and Allegra, so the rashes may be not as bad.
I will see what the dermatologist recommends tomorrow.0 -
S3K5
I hope the dermatologist had some good answers for you. And the metformin works for you. I am sending healing thoughts your way.
I am on week 12 of Piqray and thought I was sailing along. Then I develop stomach cramping. It occurs anytime I eat. In the last 3 days I have not eaten much. I already have lost ten pounds on Piqray not on purpose. My MO has had me hold the med and put me on meds for the cramping. I am hoping this has to do with the meds and not indication of progression of liver mets. But I go see MO Monday. Wondering if anyone has experienced similar.
Peace
Mary
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Mary sorry to hear about the cramping - did the hold on the drug help? Please keep us posted about what your MO recommends. I know it is hard to eat with these side effects.
The dermatologist recommended that I take benedryl for rashes and after a couple of doses my rashes seem to be under control - not gone but the rate of spread has slowed down.
I started Metformin 500 mg twice a day, but my sugar level is still on the higher side. I may need a higher dose of metformin - will wait to see the endocrinologist on Tuesday.
I haven’t eaten much due to mouth sores and a bitter taste in my mouth. A steroid oral mouth rinse is helping with mouth sores
I am only on my 3rd week on Piqray and all these side effects! I only hope this drug works for everyone who is on it..
Anyone here with good scans and decrease in tumors? Love to hear some positive stories!
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S3K5 -- Hang in there! My wife is in Week 7 of Piqray. She had horrible mouth sores for about 2 weeks and then they finally dissipated.....finally. Her blood sugars went up but they've stabilized (albeit high) with 1000mg of Metforim. She's avoided a rash but has had terrible itching throughout her torso. The itching continues but we're hopeful, it too will dissipate. The results we've heard from others about Pigray and Faslodex have been really positive so we're hopeful that the side effects will all be worth it. We've read that the SEs do tend to minimize after the first month or two. Fingers crossed.
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S3k5 glad to hear your rash is stabilizing and hopefully the mouth sores will leave soon.
My MO had me hold piqray for 4 days and my stomach cramps vanished. At the same time I have had a miserable headache that at times has not responded to any meds I tried including hydros.
My MO visit went well and she planed a stat cat scan of my abdomin and MRI of head. I received IV fluids and tramadal and she said steroids would be our next shot for the headache. My good news is the cat scan did show no problems in my abdomin and liver tumors shrinking! (MRI scheduled early Wednesday)
My head is somewhat better but I will likely ask for steroids if it does not improved from here cause it is still hard to eat or spend much time out of bed, despite use of oral tramadol
I am back on Piqray at 1/2 dose for 3 days then if feeling ok full dose.
Through this my blood sugars have been at 120 in the last two months. But I can not stop loosing weight. Hope to see a nutritionist at cancer center Wednesday.
Thanks for attending to such a long post,
Mary
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Hello everyone ! I am new to this chat and I have a question. I am almost 70, female, Stage 4 metastic breast cancer (grade 2,ER 3+,HER-2 negative). Diagonsed in July 2013, I've been on all kinds of treatment plans including a bunch of experimental drugs. My most recent treatment is Piqray because I have the PK3 gene mutation. My treatment has been 2 cycles at 200mg, 1 cycle at 250 mg. and I just started the 300 mg dosage. My tumor marker numbers have consistently gone up since starting this. I am wondering if this has happened to anyone else. I have generally never started anew treatment that the numbers go up, like it has no effect on the cancer cells at all. Any feedback will be of help
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Welcome Starfish,
I was dx 2014 and have multiple previous treatments, not all listed in my signature cause I can't seem to update them. I hope Piqray works for you. I will describe my experience in hopes that it helps.
My tumor markers took a quick nose dive then climbed back up but recent scans show mostly positive results. Liver tumors shrinking bone mets stable possible finding in my brain that they want to look at in a month.
I have been mostly on 300mg dose but 2 weeks ago I had a 3 day break due to SE and 5 days at 150 then back to 300. I have been on Piqray since May.
Peace to you,
Mary
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Welcome, Starfish70! We're glad you've joined our community, and hope this can be a place of support, encouragement, and guidance for you. We hope your numbers start to respond to your treatment soon, please keep us posted!
The Mods
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Welcome to this site starfish. Are you taking Piqray with Faslodex or another AI? It might be that your loading doses weren’t quite strong enough and now that you are at 300 you may see results but it may take several months. I didn’t see a downward trend until after 3 months. I’ve been on it for almost a year now, scans on Monday so fingers crossed things are still stable.
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Yes piqray and fasodex. Thank you for that reply...that makes me feel better. It probably also explains why my doc does not seem as concerned as me! Best of luck on your scans😀
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Also just wondering if anyone has some good tips on diet while on piqray 300mg. The medicine is hard on the stomach so any suggestions will be much appreciated.
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Mary, good to know that liver tumors are shrinking. Hope your headaches go away on their own and there is nothing of concern in the brain. I have been losing weight too. Talking to the nutritionist next week.
BLMike, thanks for the encouragement. My sugar level is finally getting stable with 1000 mg of Metformin.
Starfish welcome to the group. Do you have nausea or acid problems due to Piqray? I have both. I have been taking Dexalant for acid reflux and eating plain low carb roasted vegetables and yogurt - totally bland diet!
Pots, one year is a good run on this medicine - hope you get a long time on this.
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Does anyone have nausea due to Piqray?
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hi S3k5,
I don't have nausea, but heart burn and stomaches cramps and not much appetite. I wonder what others experience gi wise?
Mary
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hi S3K5,
I had some nausea during the first months. It would show up occasionally after that. I take ginger Gravol which helps and is non-drowsy.
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hi S3K5,
I had some nausea during the first months. It would show up occasionally after that. I take ginger Gravol which helps and is non-drowsy.
I also had a lot of GI issues the first few months until my system got used to the drug and I got better at managing them. I take Nexium twice daily to control the stomach acid. Plus I eat smaller meals now, taste buds are still off....I prefer salty foods more than sweets these days. I still enjoy good food but can’t eat as much...I guess not a bad thing
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Mary and Pots, thank you for your response. It looks like my Piqray days are coming to an end.
I had a routine follow up with my MO yesterday - the first face to face since March. The MRI of spine from this week showed progression and my tumor markers went up drastically since one month. I have been on Piqray since 5 weeks now and was hoping that this would work since I had the mutation, but surprisingly it is not doing anything for my liver and bone mets, based on my tumor marker numbers.
Did anyone have higher marker numbers while on Piqray and later they dropped?
I asked my MO (again) for local treatments for the liver. She is recommending chemo since there seems to be progression in multiple areas. I am getting a PET/CT next week to confirm this. I have gone through so many chemo regimens so far, I am running out of options. She mentioned CMF which was very hard for me to tolerate last year but this combo kept my liver mets stable.
Good luck to all of you on Piqray - hope you get many more months on this.
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I'm suppose to be starting Piqray but just learned that my co-pay would be a hefty $2900.00/month unless I qualify for financial assistance. I will be submitting all the necessary paperwork but curious to know how everyone is affording this drug? Thanks!
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The drug company will pay your copay if you have insurance up to $15K per year. No eligibility criteria other than you must have insurance. I am waiting for the specialty pharmacy to send my Piqray so I can start it and was able to sign up and print out the copay card online in a few minutes. Go to copay.novartisoncology.com. Novartis will also send a free 14-day supply so patients can get started immediately without having to wait for all of the various insurance approvals to go through. I didn’t sign up for that but would have done so if I knew about it a week ago
I have found that many of the newer drugs have the same or similar copay program (XGeva, Afinitor, Halaven, Kisquali and others). It is always a good idea to check when you start a new drug.
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JFL,
Good info for everyone who has commercial insurance.
Public service announcement for those of us who are on Medicare -- because of federal law, drug companies cannot offer the same program to Medicare recipients. (Yay, Big Pharma!) Any of these drugs that are in pill form (as opposed to infusions or injections at your cancer center, which process under Medicare Part
will go through your Medicare Part D program which, for most of us, will mean a hefty hit the first month of the drugs and then a less hefty but not insignificant monthly co-pay afterwards. And with each new year, it's rinse and repeat. For Medicare recipients, the only $$ hope is one of the private foundations that usually are income based and that may cover parts of your copay along the way.
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I am on SS and had been getting my copay for part D paid by foundations. The foundation $$ ran out 2 months ago and I have been getting my Piqray from Novartis at no charge since then. Their patient assistance phone # is 1-800-277-2254 and their website is
https://www.novartis.us/our-products/patient-assistance/patient-assistance-foundation-enrollment
Your yearly income must be below $75,000 to qualify. Hope this helps.
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My Piqray arrived today by mail and I will start it today. Praying this works for a while. I am already on Zyrtec for allergies and metformin as part of my COC Protocol adjunctive cancer treatment that I take in addition to my primary cancer treatment. I should be all set! After several calls to the specialty pharmacy over a series of days and spending nearly an hour on hold yesterday, I finally was able to get the pharmacy to send out the medication yesterday. Strange because Caremark is usually pretty quick to process medications. The representative who kept putting me on hold yesterday must have been working remotely and paid by the hour. With each step of the processing, he put me on hold another 10 minutes. It gave me flashbacks of calling AT&T where they have call centers and reps finding every reason to put you on hold and continue racking up their hours. Usually that Caremark “enrollment” call is 5 minutes with no time spent on hold. Had I not made those calls, I would probably be waiting another week.
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Hi Ladies,
I don't post much but have been on Piqray for 61 days. Got scan results today. It failed me. Ill be starting Havalen on Tuesday.
Best of luck to you all!
Hugs,
Suzy
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Stllivin, sorry to know Piqray isn't working. Initially, you had posted that your CA 15.3 went down, right?
Did you have a PET scan? Hopefully Halaven will work for you. Please keep us posted about your experience with Halaven.
My CA 15.3 markers went up last week but my MO decided to continue Piqray for a couple of weeks more and then do a PET scan. She mentioned CMF chemo combo which had worked in keeping my liver mets stable, but it was too hard to tolerate. I am wondering if Halaven would be a good alternative for me in terms of side effects and efficacy.
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