Piqray users, what is your experience?
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Dear 3-16-2011,
Good luck with the start of your piqray. I am being scanned on May 19th due to rising tumor markers (plus it's been 3 months since my last CT scan) and my MO is pushing piqray for me. Not happy about this at all after reading about the experiences of others. Please keep everyone updated on this thread.
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I am saddened to learn that Pam died. She endured so much, for so long, with a lot of spunk and courage. Mary, thank you for sharing that news. I am really sorry to hear about your PET scan and hope Piqray will do a number on those new spots! I also hope you are able to tolerate the drug well.
I started on Piqray 2 weeks ago. The first week was easy - I didn't notice anything other than my appetite decreasing. Based on the recommendations of several women on this thread, I started taking Zyrtec every day (starting several days before my first dose), to ward off skin rashes. All was well until last night, when I cropped up with an itchy rash on my chest and back. It is not severe. I'm going to start taking a second Zyrtec daily now and have reached out to my MO to see what they recommend. I have been taking Zofran about 1/2 hr before the Piqray to prevent queasiness, and that has worked well. I haven't had diarrhea or vomiting thus far, but I have totally lost my appetite and find it hard to force myself to eat. After about 10 days I developed a couple of mouth sores. Have some Magic Mouthwash now and that is providing relief. After 1 week on P. my blood sugar had risen from my usual 80s/90s to 109; not high enough to cause any concern, but this will continue to be monitored.
So this has been my experience so far. For those just starting on P., I echoe what others on this forum have recommended - have at the ready an antihistamine like Zrytec, antacids, Pepto Bismol, anti-nausea medication, perhaps some anti-itch cream or soothing pure aloe vera. As always, all suggestions for alleviating SEs are greatly appreciated!
Sending best wishes to all during this challenging time!
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"You all hang in there, you hear?"
Ah, Pam!!! (just now reading this thread..)
That's so typical of her, at the end, to take one look back at all of us, and throw some rose petals...
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Thank you Belll
I have started an antihistamine Allegra is what my mo recommended. I am on day 4 and so far so good. I do struggle to eat and I am trying to eat low carb to see if helps with blood sugar levels at all. I am great ful for the support found here.
Mary
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Well I will moving on from Piqray. My latest scan show progression. My oncologist wanted to start Havelin but I wanted to try Xeloda that I did in 2015 and took care of the bone and liver mets. It might not have any effect on the liver mets due to the mututation, but will see. Have a liver biopsy and liquid bone biopsy scheduled. So will see if Piqray did anything. Good luck ladies and I wish you well.
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Dear Mediclisa,
Sorry that you are moving on to another treatment, but hopefully a new treatment will work better.
I am still waiting for a switch to Piqray, which I think will be coming later this month.
I was curious about when you said you were having a "liquid bone biopsy." Is that a thing? Assuming that the liver biopsy is the traditional kind -- going in and getting a bit of the tumor to biopsy.
Hang in there.
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Wishing you all the best, Mediclisa.
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I have been reading through this thread. I may be starting Piqray in the near future. Piqray freaks me out a bit due to side effects stories I hear. My MO had told me 6 months ago that the side effects were much worse than Gemzar, which I currently take. However, at my appointment last week, he said he has some heavily pretreated patients right now that are finding it tolerable and effective. I do have the FGFR1 mutation, which I read a few pages back may mean it is not as effective for me. We shall see. I have a PET scan in a week and a half and then will decide whether to stay on Gemzar or switch.
The good news is that I already take Zyrtec for allergies and daily probiotics. I also take metformin which is part of the Care Oncology Clinic (COC) Protocol I take as adjunctive therapy in addition to Gemzar (repurposed mebendazole, doxycycline, metformin and atorvastatin). I started on 500mg of metformin in the summer and have worked my way up to 1500mg per day.
For those of you for whom it is working, how long have you been on Piqray
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Mediclisa- Sorry to hear of your progression on Piqray- I would be interested to know if returning to an already tried medicine works for you- it will be interesting to know.
Take care
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I am now day 11 of piqray and so far so good. I have not gotten my blood sugar results back from MO visit yesterday. I am anxiously awaiting those results. But no gi upset or rash. So far an easier start then Verzenio.
JFL I hope you have a good experience if you have to start a new treatment.
Peace to all
Mary
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BevJen, so a liquid bone biopsy apparently does a genetic analysis of the circulating cancer cells without the bone biopsy. I have a liver biopsy scheduled for next week. The interesting thing, is my scans last week showed progression in the liver and bones, but my CA 27/29 came down 250 points. So explain that! I will see my oncologist on the 22nd and will find out what the deal is. Last month my score only went down 11 points.
NKB, I started Xeloda on Wednesday, and will let you know how it works. I am having scans in 2 months instead of 3. My oncologist said he is a little nervous as it won't work on the liver mets if there is still a mutation. He originally wanted to go to Havalen as Foundation One said Piqray and Havalen are the two chemos that will work. I brought up Xeloda which is what I did for 1 year in 2015 and took care of the liver met that popped up during a clinical trial I was on. Will see if Piqray did it's job for the 5 months I was on it. Thank you Into The Woods. Good luck to you all! Lisa
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mediclisa there has been some conversation on the Piqray FB group lately about TMs dropping like crazy on Piqray and then scans showing progression. According to the FB poster who brought this up the drugmaker is looking into this. Unfortunately she did not provide any resource for this claim from her MO, but I am watching this carefully since it would provide a very disappointing effect emotionally. Best wishes on Xeloda. Several women in my support group here are on this for many years and I hope it works for you too
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Thanks Moomala. What is also disheartening is that if I didn’t have my scans on the same day my CA 27/29 were drawn, I would have thought that Piqray was working. Very upsetting. Good luck!
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Mediclisa, that must be very frustrating and a bit scary that your tumor markers were dropping while you were showing signs of progression. There are few times we feel confident a treatment is working and usually dropping tumor markers is one of those few times for those whose tumor markers are usually have some sort of alignment with our progression. And Moomala, crazy that others in your Facebook group are having the same issue.
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A few updates on my Piqray experience. First week was a piece of cake. Second week: mild rash, blood sugar had soared to 216 so I am now on Metformin; no appetite (food almost repulsive to me), frequent nausea, mouthsores. I took Zrytec religiously but by the start of week 4 I broke out in a severe, itchy rash that by the 4th day (yesterday) covered nearly every square inch of my body. Antihistamines, topical prescription cream, hydrocortisone cream - nothing was touching it. The only thing that eases the itching is ice packs. The itching has nearly driven me crazy!
So yesterday I got in to see my MO. I was given IV fluids with a steroid and anti nausea med and prescribed a course of Prednisone. She also suggested I try Benadryl. She has taken me off the Piqray - not sure yet if that will be temporary or permanently. I haven't seen any improvement yet but hopefully that's coming soon. So standard chemo may be advised sooner than expected. Those of you who have taken Xeloda, Havelin (or any other chemo for MBC) - what was your experience? What were SEs like? I appreciate whatever you can share!
I hope others are able to tolerate this drug better than I did and it is effective for you. Best wishes to all!
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Bell
Sorry for your side effects. I was previously on xeloda for about 18 months and it kept me stable for most of that time. I had some side effects increased neuropathy and some hand and foot rash but they were intermittent and taken care of by dose reduction and prescription of Lyrica. Xeloda for me has been my easiest chemo, no gi side effects and I could maintain my weight. I wish well in your treatment course.
Peace
Mary
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Hi, I’ll be joining your group. Tonight I start Piqray 250. I’ve taken Zyrtec. I’m going to take with dinner. Someone said zofran 1/2 before taking it. I’ll try that. Anything else I should know? Thank you in advance. Wish my luck!
Good luck to all of you Piqray peeps.
Suzy.
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Good luck, Stllivin! Any issues on your first days of Piqray? I don't have any suggestions as I am not yet on Piqray but am following this thread as Piqray will likely be my next treatment once Gemzar stops working. Looking forward to hearing about your experience.
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Mary, thank you so much for sharing your experience with Xeloda. I'm glad you were able to tolerate it pretty well and got good results! It's so helpful to hear how others do on various treatments, how effective they are, what SEs occur and ways to manage them.
After one month on Piqray, I'm DONE! Along with feeling rotten ALL the time (after week one), being nauseated and repulsed by food, having mouth sores and soaring blood glucose, 12 days ago I developed a horrible rash that has covered nearly every square inch of my body, scalp to feet. The itching has been intense and unrelenting. It is now finally winding down. My MO said I had a severe, systemic inflammatory reaction to the drug. I had to have 2 infusions of IV fluids with added steroids, antihistamines and anti nausea medication.
The worst part - I gained close to 20 pds in less than 2 weeks from the Prednisone I'm on to knock out the rash!! (I've taken steroids before & this never happened.) This is so disheartening for me, as I'd managed to slowly lose 50 pds in recent years (FINALLY, after being obese for much of my adult life) and had kept it solidly off for several years. Now, on top of everything else, I've got to try & lose it again.
I do want to also share that my tumour markers came down nicely from 2 weeks ago and I believe that was from the Piqray. I've been on Faslodex since late Feb but didn't start Piqray til late April (it took forever to get their financial assistance program in place and receive the drug), and my markers had trended up some on the Faslodex alone. So it's a shame I couldn't tolerate Piqray as it may have provided excellent results. I will also say that I did not have any diarrhea or vomiting while taking Piqray.
Stillvin, I did take Zofran about a half hour before the Piqray as it made me so nauseated and that helped a lot. I also took Zrytec every day, hoping to ward off getting a rash, but ultimately that wasn't enough to stop it from happening.
I'm sorry to share such a negative experience but felt it might help someone else attempting to take this drug. Each person reacts to meds differently so just because I did dismally on it, it doesn't mean you will. I hope with all my heart that others will be able to handle Piqray better than I could and that it will be super effective in delaying disease progression!
I don't know what the next drug protocol will be for me. It may be Xeloda. My MO wants to focus on my recovery for right now and then we will solidify my new treatment plan.
Best of luck to all!
P.S. I know this pic of my leg is gross but says it all.
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Mary, thank you so much for sharing your experience with Xeloda. I'm glad you were able to tolerate it pretty well and got good results! It's so helpful to hear how others do on various treatments, how effective they are what, what SEs occur and ways to manage them. After one month on Piqray, I'm DONE! Along with feeling rotten ALL the time (after week one), being nauseated and repulsed by food, having mouth sores and soaring blood glucose, 12 days ago I developed a horrible rash that has covered nearly every square inch of my body, scalp to feet. The itching was intense and unrelenting; now finally winding down. My MO said I had a severe, systemic inflammatory reaction to the drug. I had to have 2 infusions of IV fluids with added steroids, antihistamines and anti nausea medication.
The worst part - I gained close to 20 pds in less than 2 weeks from the Prednisone! (I've taken steroids before & never bloated up.) This is so disheartening for me as I'd managed to slowly lose 50 pds in recent years (FINALLY, after being obese for much of my adult life) and had kept it solidly off for several years. Now, on top of everything else, I've got to try & lose it again.
I will share that my tumour markers came down nicely from 2 weeks ago and I believe that was from the Piqray. I've been on Faslodex since late Feb but didn't start Piqray til late April, and my markers had trended up on the Faslodex alone. So it's a shame I couldn't tolerate the drug as it may have provided excellent results. I will also say that I did not have any diarrhea or vomiting while taking Piqray.
Stillvin, I did take Zofran about a half hour before the Piqray as it made me so nauseated. I also took Zrytec every day, hoping to ward off getting a rash but ultimately that wasn't enough to stop it from happening.
I'm sorry to share such a negative experience but felt it might help someone else attempting to take this drug. Each person reacts to meds differently. I hope with all my heart that others will handle Piqray better and be super effective!
I don't know what the next drug protocol will be for me. It may be Xeloda. My MO wants to focus on my recovery for right now and then we will solidify my new treatment plan.
Best of luck to all!
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Oh gosh, belll, I'm so sorry. What a bunch of misery. Hope that clears up pronto and you start feeling human again.
I bet the steroid weight will come off as fast as it came on. Probably a lot of fluid. Hope for the best!
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Belll
That looks so miserable, I am sorry. I hope the next treatment treats you better and has good results. Sending you thoughts of healing.
Mary
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Mary and lulubee, thank you for your good wishes and healing thoughts! How are you faring on the Piqray? I hope you are able to tolerate it well and manage SEs. I will also be very interested to hear what kind of response you and others experience (disease halting or progression) from Piqray and hope it is strong!
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belll, Piqray is next up on my dance card, when Verzenio bites the dust. I will most likely be joining the party here at my June appointment since my TM's are climbing.
I had dexamethadeath (as I call it) with weekly Taxol for a long time. Hated the weekly crash and begged to stop it. When I look back at pics from that time, I clearly see that I had moon face and looked at least 20 pounds heavier. When I moved on to the next treatment, the puffies disappeared.
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asco updated the stats from Piqray trials..
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This is encouraging news. I’m on cycle 10 and a dose of 250 mg. SE are certainly better at this dose compared to 300 mg. Mets continue to be stable
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Hi All, Six days on Piqray 250. Pulled off due to high blood sugars - 439, I think. My A1c is 5.9. I guess Piqray sure does a thing with our blood sugars. I see Endocrinologist on Thursday to make a plan so I can get back onto Piqray. So far, the high blood sugars was on side effect.
Suzy
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Bell, so sorry to hear (and see) how badly Piqray affected you! I hope your rash has cleared and your next tx treats you much better!
Stilllivin, hope the endocrinologist is helpful and you are able to try a lower dose. Did your doc suggest metformin for the high blood sugar? Maybe a blood sugar of 439 is too high for metformin to be effective, I don't know, just know a lot of people use it for high blood sugar caused by Piqray. Good luck!
Cure-ious, thank you for the link to that article on Piqray. Very encouraging!
Pots, so happy to "see" you and hear Piqray is keeping you stable. Also glad you got a dose reduction. Interesting that both of us long timers on this drug have needed a dose reduction after being on it for many cycles.
I've now been on Piqray for 11 months. Had to temporarily stop and then reduce the dose from 300mg to 200mg due to sky rocketing lipase and gastric problems. Feeling very good at this reduced dose. Scans in a few weeks, fingers crossed.
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Hello Piqray ladies! I hope you don't mind if I join your little group on behalf of my wife, Polly. I see a couple of familiar faces here from the Ibrance thread where I actively participated, but if members here don't feel comfortable with a caregiver posting, I understand and will gladly step away from this thread.
As I read through this entire thread, I began to get a feel for many of its members, and I was so saddened to see that Pam passed. As we participate in these threads, we really get to know and care about each other. Each setback and each success impacts all of us (including interlopers like me).
My wife, Polly, was diagnosed with MBC in her lungs in June 2019. She went on Ibrance but had two successive scans showing growth in February and May of this year. Since she has the PIK3CA mutation, her MO is switching her to Piqray and Faslodex starting next week. We're both a little nervous about the SEs after reading through this thread, but are also cautiously optimistic about its effectiveness if (and that's a big if) she can weather the SEs. It's so helpful though to see what others here have done about keeping blood sugar in check, controlling rashes, and responding to nausea and fatigue. Thank you for that.
I wish you all only the best on your Piqray journey!
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BL Mike and Polly,
I am relatively new to piqray and this thread but I welcome you. I have just started my 5th week at 300mg a day. I am taking Allegra daily to avoid rashes and so far so good. I have limited GI problems, but my BS levels are higher than normal for me at 150 to 160 but not worriesome to my doctor's yet.
I hope Polly has good results and a good experience on this medication.
Peace,
Mary
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