Piqray users, what is your experience?
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BLMike, Of course you are welcome to post here! I'm so sorry your wife was dx'd with MBC. I hope this will be an effective tx for her with few se's. I hope some of what you have read on this thread will be helpful.
Mary, I apologize for not welcoming you sooner. If you are in week 5 with no really bad se's I think you are in for a relatively easy ride on this tx. Fingers crossed this continues and this will be an effective combo for you.
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To all of the piqray folks,
I have been on Ibrance/faslodex since last August. Long story short, I have liver and bone mets. The liver mets are quiet now, since I had a microwave ablation of the largest last July. There is a question about whether Ibrance is working on my bone mets. My MO thinks that I've had a bit of progression, but all bone mets show up as sclerotic, so my consulting MO thinks the treatment is working and that the sclerotic bone mets are a sign of healing from Ibrance.
My MO is pushing for piqray pretty hard. I can't take an AI with it, I don't think, because letrozole failed me after 13 years.
Are any of you folks on faslodex along with the piqray? I know that ASCO just announced that it's okay to do that based upon current trials -- just wondering if anyone is already doing it and how it's going?
Thanks much.
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I’m joining you all this week. I was on ibrance with 2/3 of the AI. Tried faslodex too before giving up and moving on to xeloda.
MO wants me on piqray, metformin, faslodex and zometa.
I had liver rads in December. Good scans in February. May showed double the number, size and whereabouts in my liver. I’m ready to send the squatters away for good.
Two or three questions...
Zyrtec 10 mg twice a day when it says it’s 24 hour? Or did you do children’s?
No cute names for piqray users? I’ve been a fanny pack girl and on Madame X. My MO gets a kick out of them. Especially the femera one. It’s terrible but true for me.
Thanks!
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Hi BevJen
I take faslodexx with piqray and my MO indicated my foundation one results indicated faslodexx would work better than an AI. I am on week 5and tumor markers took a giant nose dive. And Bone pain is gone and fatigue improved. I also have bone and liver mets. I hope this combo is working.
zillsnotforme,
Welcome, I also feel new to this thread. I have progressed through xeloda as well. I love your chemo Nick names. The only one I can think of is picking women. But I would love to hear yours.
Peace
Mary
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Picking is good. I grew up with bluegrass music. Or picky as we have to watch what we can eat/tolerate.
How long before my xeloda feet are better? I was at the stage where I didn’t care if I lost my toenails because they hurt. You know it’s a bad day if your toenails hurt.
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Moomala,
Not sure if you are still reading this thread, but a couple of pages back you mentioned that people on the FB page for piqray were saying that TMs were dropping but there was progression anyway.
If you're reading this (or if anyone else knows -- I'm not on FB) -- has there been any more chatter about this at all? I ask for two reasons: I may be going to Piqray for my next treatment is the first. But two weeks ago, I had a consult with Dr. Cristofanilli from Northwestern about my particular situation (he thinks I should still stay on Ibrance/Faslodex for the time being.) One of the things that we discussed is that I seem to be showing sclerotic mets in my spine -- he stated that he thought those could be evidence of the treatment actually working bc I might have bone marrow mets and the sclerotic bone mets could be showing the healing process/reaction to the drugs.
Anyway, just thought I'd raise this and see if anyone else has heard this from their MO, either for piqray or for other MBC drugs. Thanks.
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Hi BevJen - I have not seen a single further word about it and no link backing the information. So I am a little skeptical about it now.
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Thanks, Moomala, for getting back to my question.
I hope you are feeling better these days!
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I started piqray on Friday. My mind is clearer but I nap a lot. Not hungry. I’m sure it will level out soon. Zometa gave me a fever of 101.7 early morning after my infusion but it was gone by that afternoon.
Piqray 300
Metformin 500
Zyrtec 10
Faslodex and zometa once a month.
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Well, my wife has completed her first week of Piqray. So far so good. She had a bit of a rash on her arm yesterday and a bit of nausea one day, but other those isolated SEs, she's done very well................so far. She gets her first blood work tomorrow and we're very interesting in seeing those results especially the blood sugar. Good luck to all the fellow-Piqrayers!
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Hi All
On Piqray now for two months. MO visit yesterday, and my liver labs were with in normal limits for first time in forever. I am waing A1C. It was 5.4 last month and I am hoping it is some what stable. My tumor markers took a nose dive last month and I am hoping for more good results. In April I was so fatigued I could only go from bedroom to kitchen. Now I am working in the garden for 2 hours at a time.🤗
I am avoiding sugar and flour and working to keep my carb count 35 to 50 a day. I am wondering how others are doing with blood sugars.
Thanks
Mary
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Hi Mary,
I’ve been on Piqray 35 days. My blood sugars went thru the roof. Before Piqray my A1C was 5.7. I’ve been working with an endocrinologist to get it under control. I’m only on 200, cuz of the sugar rise. I’ve been put on Tresiba once daily and insulin 3 times daily. On night my before bed blood draw was 150. Then overnight Piqray kicked in and morning was 345. I’m not very hopeful this will get under control. But the high sugar is the only side effect I’m experiencing ( knock on wood!). I had labs drawn today we will see if it shows Piqray is worth all of this. I hope so.
I’d be interested in what tricks you use to keep your carb count so low.
Glad to see people are still on Piqray, as this thread moves very slowly.
I hope everyone is doing well!
Suzy0 -
i have been on piqray 4 1/2 months and doing great. I have noticed thining hair but my oc says it could be from lack of hormones. I control my blood sugar by my diet but that hasn't been an issue. I am just aware it could be. My tumor markers have dropped to the normal levels. Life is good. Best wishes for you.
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Suzy
It is hard work to keep carb counts low and I do a lot of keto complaining to my son and dh who put up with me. But I do keep on hand foods I love with no carbs or very low carbs that l can get to quick when hungry. ( Brie cheese, spinach dip, walnuts, berries, and sliced smoked turkey) I make my own friut sauce/jam from rhubarb and berries and stevia for my sweet tooth which I have most mornings with full fat yogurt.
So far so good. I keep telling myself it's temporary, but I also know I would love this med and therefore the crazy meal plan to work long term. My tumor markers CA27.29. we're 635 in May, yesterday CA27.29 was 175. And I feel so much better. So I am motivated right now to make it work. Though I have my tough moments and occasional cheats.
Good luck and peace to you
Mary
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I had the rash about 10 days after I started from head to knees and feet. I still have fading marks from it. I tried to restart at 300 after I finished prednisone but had stinging/zapping within the hour.
MO wants me to be clear of rash and get my zometa infusion and then start back at 150. I’m hoping this weekend or Monday.
There’s a wonderful Facebook group with lots of experience. I started antihistamines and metformin with piqray. I haven’t stopped the Claritin but am holding the metformin until back on P. My baseline glucose is good. Fingers crossed it stays that way.
I have had more energy, feel like my old self. It is a balancing act. I may replace my stomach med with Pepcid as that is also an antihistamine. I had no idea.
Good luck piqray pioneers!
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Sound like you are on the right track. Good job.
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Mary -- My wife is about a month behind you. After her first week on Piqray, her glucose was up to 146. After two, it was up to 168. She's now been on Metforim for a little over a week, and after her blood work this week, her glucose is steady at 168. She's basically had little to no SEs from Piqray or Faslodex (thank goodness).
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Mary- Great news that Piqray works!! A friend of mine studies metabolism and circadian rhythm, and he discovered a huge beneficial effect on blood sugar was to go on a daily fasting (intermittent feeding) schedule. Basically it means to control /WHEN you eat, irrespective of WHAT you eat. On this diet you work out a schedule where your last meal is like at 6-6:30 pm, and nothing whatever beyond water after that (excepting meds, of course). They found this was as effective as adding metformin, no matter how much or what you ate during the day. The big point was to let your body metabolize the food and enter into the more effective fat-burning cycle as early in the evening as possible. Eat even just a grape and you go back to glucose burning and it takes another hour to get into a fast. Studies with mice showed they could eat high calories and sugar but not have metabolic problems if they had this enforced fasting period, whereas mice eating same food & number of calories but without fasting were obese with high sugar problems etc. Your body likes to have things on schedules and will anticipate it and move to a stronger and more effective sugar-& fat-burning evening cycle. It's got to be easier than restricting all these foods.. And of course if you do this AND take metformin your blood sugar will go even lower, and metformin works way better in a fasted cell environment anyway.
Here is a link to his work:
https://www.nytimes.com/2018/07/24/well/when-we-ea...
https://www.nytimes.com/2019/06/04/well/eat/interm...
and diet advice from a PI3K expert
https://news.weill.cornell.edu/news/2019/03/sicken...
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Zillsnot4me, I hope your rash has resolved and you have limited SE going forward. With xeleoda I had skin reactions off and on much of the time with dosing going down then back up. I was desperate to hang in there cause xeloda worked against the cancer for me.
BLMike my blood sugars were in the 150s to 160s the first two to three weeks but now they have come down to 100 to 120. I am not on metformin yet and would like to see if I can stay off of it.
Cure ious, thank you for all the info. I have not read it yet but plan to. It is exactly what I have been looking for, thanks again.
Peace to all
Mary
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yep, my friend has been working with cardiac patients at a local hospital, he says just the regular evening fast was good for as much as a 1.5 point drop in A1C levels, without diet changes
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Worth a try Cureios. Thank you again. Great article from Cornell.edu. I love learning about how the mutations function.
Peace
Mary
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Hi!! I've had 33 days on Piqray. My CA 15 tumor markers went down by 15. Is that a sign it may be working? My CBC bloodwork was all within range. My sugars are another story. Still trying to get them under control. Currently on Tresiba and insulin. I can't take Metformin.
Zills, we are pioneers aren't we? I wonder worldwide how many of us are on Piqray.
Be well,
Suzy0 -
I’m sorry to say piqray is besting me. Tried a reduce dose of 150 this am. Itching which in a couple of hours. Throat felt swollen. Called ambulance. My poor kids were freaking out.
Was given injections of pred, zofran, Pepcid and benedryl. Itchy turned into rash. ER doc said that histamine being released. Nothing to worry about but annoying. Sent home with rx for pred and cortizone cream. Had my second Benadryl at home. Still itchy in spots. Ear, between fingers, soles of feet.
I didnt have any high Sugar readings. Really want a milkshake. Comfort food and cool on my throat. But sure don’t want any more issues.
I really want this to work. But I’m afraid with my throat issues she’ll puta cabatz on it. I never added in the second Claritin.
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Zillsnot4me,
Wow, you had some allergic reaction. Really surprised that they didn't hit you with an epi pen at the emergency room, especially with the throat issues. I am severely allergic to bee stings, and had a case of anaphylactic shock years ago from that and it sounds like the same thing -- they couldn't throw me down on the table and stick me fast enough!
Did your doc have you on both Zyrtec and Claritin -- is that what you meant that you didn't take the second Claritin?
Hope you are feeling better soon.
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the Zyrtec made me so sleepy that I switched out for Claritin. She wasn't sure I needed a second 24 hr antihistamine. She did switch me to Pepcid as it has some antihistamine properties. Told to take benedryl for breakthroughs. And the dose was only 150.
They didn't think it was a severe allergic reaction. Said it was an intolerance. Since my oxygen levels were good and my lungs sounded good they sorta poo pooed my throat feeling swollen as they didn't see anything.
However was told to return to ER if my throat was acting up again. The doctor was very sympathetic. And they gave me a rx for an epi pen.
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Zillsnot4me
What a day. So sorry. I hate what cancer can do to my loved ones. Glad you are home and hopefully the itching will stop soon.
I am sending positive thoughts with hopes for no more se.
Peace
Mary
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I will joining this group starting this week since I have had progression in the liver and spine mets on every other possible chemotherapy. I get my treatments at MSKCC and my oncologist is very proactive. She did warn me about the SEs of Piqray and honestly, I am a little scared to start this.
Does anyone have any advice as to how to avoid or reduce the side effects? Should I buy Zyrtec or Claritin or Allegra? I am working full time so I need to be awake for 8 hrs atleast !
Zillsnot4me, sorry to hear about your reaction to Piqray. Hope you are feeling better now.
S3K5.
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S3K5 -- Sorry you're here. I'm sure some of the women experiencing this first hand will weigh in, but based on what I've read and my wife's experience, I think you'll probably want to proactively take Zyrtec or Claritin or Allegra for the rash. Rising blood sugar is also a common SE so watching your diet and not eating after 6pm or 7pm seem to help many. Diarrhea and nausea are also fairly common so, again, watching your diet and having treatments on hand for those are also important. Good luck! My wife and I are new here (on Piqray), but have really found this site helpful and reassuring as we transition from treatment to treatment. Best of luck, and I'm sure some others will chime in shortly.
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I would love to know how many women successfully have been on this piqray and how long have they been on it. I have been on it now for 5 months and doing good.
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S3K5 I started 24 hour Allegra when I started Piqray and have not experienced rash. My MO say since I am past the first two months now I could stop it. I am a little chicken and I have one month left so I will take it for at least this month. I eat a very low carb diet to try and keep my blood sugars manageable and so far this has worked. I do miss ice cream.
Jancie,
I have been on Piqray since the begining of May. So far SE are manageable, and the treatment seems to be working. MO says PET scan in September.
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