Piqray users, what is your experience?
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Hello Bliss58
Being off Piqray for 5 days really brought my blood sugars down. I was put on 250 mg then my blood sugars shot up to 335!! Doc stopped Piqray for two days with a blood test tomorrow and the start of Metformin.
I also have a very deferent taste in my mouth that kills the joy of eating good tasty food☹️
Lowering the does down to 250 mg has helped with taste, fatigue and appetite.
Hope I can stay on this drug.
Annamari
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My feet have been swollen for 24 hours. The tops are puffy with edema and they hurt. I wore compression socks all day and that helped, but when I took them off to get ready for bed just now, my feet instantly felt worse and it's hard to walk now with the socks off. They are very trigger-happy with cramping, like if I flex them they start cramping.
I'm puzzled. Can anyone help me sort this out? What could have caused this? What can I do for relief?
I had both Zometa and Faslodex 11 days ago.
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lulubee, sorry to hear your feet are swollen. I don’t have a magic fix but do recommend that you alert your MO to the problem. My MO keeps a close watch for this so it must be an issue for some patients.
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Hello All,
It looks like I will be joining you soon. I used to be fairly active on the Stage IV forum, but haven't been here for awhile. I was stable on Ibrance/Faslodex for 4 years, with very minimal side effects The only serious side effect was a blood clot in my left leg a few years ago, and so I take Eliquis now. My tumor marker numbers have been creeping up though, and the last PET/CT scan showed some progression (still just in the bones), so it's time to move on. I had a bone biopsy, which showed I have the PIK3CA mutation, so I'm starting Piqray next, along with the Faslodex that I'm still taking. I finally got through the 17 pages of this thread, which I found very helpful and a bit terrifying! At least I have some idea of what to expect now though, in terms of side effects and what meds to have on hand, or take preemptively, to counteract them! I have a virtual teaching session tomorrow afternoon, immediately followed by phone conversations with a social worker and the financial dept, I think to talk about how to get help paying for it! (and I thought Ibrance was expensive! Luckily, I had help paying for that, too). They said they were sending out information for me to look over ahead of time, but I haven't gotten it yet. Luckily, I looked at some general information online. Between that and this thread, I don't know if there will be much she has to tell me that will be new info. I do have lots of questions for her though, such as what are the particular protocols that they suggest, in terms of meds for the SE's, monitoring and controlling blood sugar levels, etc. I'm not sure when I'll be starting it. I get my Faslodex shots on the 29th, and I noticed my onc has already put in a script for the Piqray I don't know if I'll start then, or if it'll take a little while to get funding approved, or? Another thing to ask about tomorrow. Also, I've been sick for the last 2 1/2 weeks (not Covid, thank goodness) and am just starting a round of prednisone/antibiotic (about a week's worth), so hopefully will be recovered from that before I start on this. Sorry this is so long. It feels good to know that this group is here for support and information though, and wanted to introduce myself and my situation.
Amy
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I am having very painful problems with my feet and I need help. Insight, suggestions, anything. My feet and ankles are swollen with pitting edema and going into spasms. The cramping splays my toes every which way, and they freeze like that for 10-20 minutes until it releases. It radiates up the outsides of my calves. I can barely walk.
Has this happened to anyone else here on Piqray??
This flared up the week before Christmas, too. Since I had some other signs of dehydration, my nurse ordered a big bag of IV fluids. Within an hour I began to feel better in general. I wore compression socks and did okay for a couple days. Then last night both feet swelled up again, more painful this time. I've been in my adjustable bed all day with my feet elevated, getting up every half hour to walk for a minute. Which makes me want to weep.
I just took an Ativan (with a little shot of desperation scotch) to see if that will relax the muscles. I've tried Advil, CBD balm, magnesium oil, and a heating pad today and nothing seems to knock it back.
I had Faslodex injections yesterday but I've been getting Fas every 28 days for about 2 years so I can't imagine this is a reaction to that.
Any ideas? Suggestions?
My onc is on the ski slopes somewhere. Naturally.
(And pls don't suggest I go to ER. My hospital is so packed with Cvid they are now turning away people in ambulances! They have patient beds lined up in the hallways.)
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Hi lulubee
I do get the er avoidance. I have straight up told my doctor's no way, especially since I had a pending appointment in 2 days and people at home with me. And I am dying, had this since 2014 and rather die at home then die a covid death.
Do doctor's cover for your doc and prescribe something over the phone for relief. When all else fails I go to ice and heat to see if they help.
Boy I wish you relief. When I had terrible hand and mostly foot syndrome on xeloda Lyrica helped but it can be expensive if insurance doesn't cover. And I don't know if that's what's going on for you. My feet did swell when it got to it's worse.
Wishing you good care,
Mary
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Thank you, Mary. I'll reconsider Lyrica. I know for sure I cannot take Gabapentin.
Question for all:
Can Piqray cause neuropathy?
Does this even sound like neuropathy?
I had that with weekly Taxol for 2 years, but it was more numbness.
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lulubee, I’m sorry to hear things have gone from bad to worse. I too have foot and leg spasms that are so intense that I’m in tears and gripped by pain. My MO suggested I try tonic water as one option and Robaxacet (Methocarbamol) for another option. The tonic water did nothing. The Robaxacet is helping, it is a muscle relaxant that is potent enough to basically force my muscles to relax. I don’t have an answer to the feet swelling....what time of day are you taking the Piqray? I had a spell around 6 months in where it felt like my kidneys weren’t working as well as they should, it was harder to void my bladder no matter how much water I drank. It passed after a few days and I just kept flooding my system with water. Do you think adding an electrolyte might help if the IV helped? Do you have any chest pain?
Yeah my vote is stay out of ER if you can. That said, does the clinic or MO have a dr on call? Mine doesn’t here so the only option is ER. My NP clinic does have a dr on call so that’s where I would start.
Please keep us posted....your leg swelling is definitely a concern.
Ann
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Lulubee,
As a stop-gap measure, try soaking your feet in warm water and Epsom Salt. This may help reduce the swelling.
Hope you get a resolution to this issue soon.
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Lulubee - use a product called Theraworks Relief-works immediately to calm the cramps in legs, calves, feet and toes.
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I have a question for you ladies that are medication for high blood sugar level with Piqray. I am on Miforman and it makes be very sick! Are there other medications available the help bring down blood sugar levels?
Annamari
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I’m on glumetza 1000mg x2 taken with supper. My biggest challenge has been to manage diarrhea in the mornings, not every day but when it happens then I am running.
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Hi! I use acupressure mats if I feel any pain. You can find it on Amazon. I have bad back. I just laying on the mat and sleeping. After that I'm just like born again. Hope will help.
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Krstnkrpv, are you going through breast cancer as well? Please share a bit more about your experience, as this is a forum for people with a Stage IV diagnosis. Thank you.
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Hi all. I'll be leaving this thread. I think Piqray was working for me, but its just not the drug for me because it was just too much for me to handle. MO wants to try Verzenio for now instead, but hold Piqray in our back pocket for later use if needed. Thanks for all the good advice and support.
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After 18 months on Piqray, I am moving on to neratinib. Last scans showed progression in liver and tumor markers have skyrocketed. This has been a good tx for me. My blood sugar increased, but never to a level that required treatment. I took Zyrtec in the beginning and did not get a rash. Diaharrea has been an occasonal problem, but manageable. Same with fatigue.
I am sorry so many have had really difficult se's with this drug, and I don't mean to minimize or discount your experiences in any way. I just want others who may be starting this drug in the future to know it can be quite tolerable and effective for some. I am grateful for the time Piqray has kept me stable.
Best wishes to all!
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Jobur,
Thank you so much for this. I am 4 days into the drug, just started having some significant nausea and vomiting this afternoon. Hoping to move past this and get some time out of this drug.
I am sorry to hear of the progression. I hope your next line is as easy as this last one was for you, and that you get a long stretch of time on it!
Best
Stacey
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Thank you for the kind words Stacey. I hope you can get through the first 30 days on this drug and have manageable se's and good results. Please be sure to tell your mo about the vomiting if it continues and don't wait until it gets really bad. I would not be shy about asking for a pause or/and dose reduction if you need it. Fingers crossed you feel better soon.
Jo
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Ugh. I forgot my Claritin for three days in a row and now I have itchy little pimples here and there. Lesson learned.
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Amp47,
It is a good possibility that I will be moving to Picray very soon. I have already met with an endocrinologist to try to help me be prepared for the blood sugars. I haven't seen anyone else do this, but we have a plan to monitor my levels three times a day and give myself insulin if and when I need it. He says the insulin really won't hurt anything and you can control how much to take as you need it. I asked him about Metformin as that seems to be the go to for everyone with the high blood sugars. He said that he prefers the insulin, because you can't adjust Metformin like you can the insulin. Also stated that Metformin has to be filtered through your liver and he feels like our livers have enough stuff going through them. I don't know if that is something you could try to replace Metformin if it is making you so sick.
I'm pretty nervous about this change as I am a terrible eater. My habits need to change a lot! I have been on Ibrance/ letrozole for almost three years so it has been good to me. My TM's are getting pretty high and I have more bone mets on my spine. Fortunately I still only have bone mets. Thankful for that.
Hoping you feel better soon.
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Hi everyone -
New to this forum, but unfortunately, not new to MBC. Likely starting Piqray in the next few weeks for newly diagnosed mets to liver and would love advice on most common SE and best ways to manage.
I was on Xeloda for about a year and a half after mets to right axilla in 2018 (this is after 2017 mets to Brain followed by 2 craniotomies and cyberknife) and Xeloda worked and shrunk my tumor!! But the hand and foot on full dose was really debilitating and so painful to walk so I had the tumor removed in Feb '20 and also did radiation as they couldn't remove all of the tissue which was wrapped around a vein. Successful surgery and radiation meant I got to go off chemo!
With new diagnosis, I thought the recommendation would be Xeloda again, since it worked before, but Onco said Piqray is more manageable side effects so we should try it. If it doesn't work, then I could go back to Xeloda. I'm a bit torn on this as I don't want to waste any time or possible additional spread if Piqray doesn't work for me .
If anyone's taken both, would love insight. Otherwise, just advice on managing Piqray SE would be great.
Thanks!
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I've been on Piqray for 17 months, dose now at 250 mg. I'm in a clinical trial that specifies to take it with breakfast. You can expect a rash around day 14...I take Claritin daily ever since I got the rash. I didn't have high blood sugars until month 9 but others have it almost immediately. I now take Glumetza (Metformin) daily and have moved my diet to lower carb. I found after a couple of months that my appetite and taste buds changed so I got pickier about what I wanted to eat. Expect to lose weight. Diarrhea is a common SE and it can be explosive. Make sure you drinks lots of water. You may or may not have SE, you won’t know until you are on it. They also may change as time goes on. This not an easy drug, however I have enjoyed a QOL and more time as a result of it
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greeneyes50, I've been on both Xeloda and Piqray. I still visit this thread periodically, but have been off Piqray since early December and now taking Verzenio. It really does depend on each person and how SEs manifest. With Xeloda, I started at 3000 mg daily, but got a bad case of H/F, so was reduced to 2500 which was much better, but in the end, it didn't work for me. It seemed Piqray was working for me, but really messed with my blood sugars from the get go, I had little appetite and lost weight; I had it to lose though! MO decided I should try Verzenio. After 3 weeks, I'm doing very well with it, but I know many who have had a very tough time on it. PET scan on Monday, so I'll see if it's working. If you do Piqray, it's probably good to bring in an edocrinologist or at least test sugars often which they didn't have me do. I'm still considered diabetic because of Piqray. Good luck!
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Hi Jobur,
I was diagnosed with bone mets (spine, skull, ribs, sacrum) in June of 2020 and my TMs have just been going up since. Recently, my PET showed a new spinal met and indeterminate lesions in my liver, so I'm being placed on Piqray. While I am aware of the numerous side effects to this drug and have read all the posts related to it, its encouraging to hear that you had an easier time it than most. I was told to start Benadryl, 3 times a day, when starting Piqray (and fulvestrant). I was on Ibrance & letrozole and then Ibrance and fulvestrant). I've also been given anti-nausea meds, both Zofran & Compazine, in case one does work, the other might. I'm going to ask my MO about Zytec, thanks for suggesting this. I'm going to try a low-carb diet at the start keep the hyperglycemia at bay. I'm also going to force myself to drink more water; I hate plain water, but lemon helps! I used to drink sugar-free naturally flavor seltzer water, but that gave me indigestion on Ibrance. Maybe I'll be able to tolerate that on Piqray...will give it another try.
Can anyone tell me if you lost your hair on Piqray? I lost my hair in 2009-2010 on chemo and I'm not afraid of losing my hair, but my daughter is getting married in early June of this year (micro-wedding)and was wondering if I'll still have hair or will I need to wear a wig? Also, I work full-time - will I be able to manage working full-time on this drug. I certainly hope so because my health insurance is through my employer. I'm blessed to be able to work from home, so I will be close to a toilet if need be. I'm more worried about tiredness and feeling sick all the time.
Thanks everyone for sharing your experiences with me - I really appreciate it!
Jobur - I wish you good luck on neratinib. My MO mentioned that drug to me, so that may be my next course of treatment.
Take care everyone! Be safe!
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Hi Katrose, my hair growth slowed down and started to thin in month 3-4; not enough to need a wig. I keep it short. Ironically I need to get it cut every 7 weeks now as it is growing a lot. It did change texture to more wirey.
Raised blood sugars is certainly a common SE however mine didn't skyrocket until month 9. As you can see others had problems right from the start. I think it's wise to monitor your blood sugars and also see if a low carb/keto diet helps keep it in check.
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Katrose,
Today marks 14 days on the Piqray/Faslodex protocol. I came off Afinitor/Aromasin and was already taking metformin for blood sugar and an anti-histamine for skin rashes. I have also been on 5000mg of biotin a day as Afinitor can also cause hair loss. Taking these 2 meds and the biotin kept the issues in check on AA.
Day 4 of Piqray I became very nauseous and started vomiting. It was brutal for about 4 days until I was able to get in check with using CBD/THC gummies 2X a day and for 2 nights I also took Zofran. I take the pills with 5% greek yogurt or a small vegan protein drink about 3PM. I am trying to be extra cognizant about hydration, I was only able to drink mineral water for a week or so but I am ok with flat water again now.
Labs after week one showed kidney function numbers up a smidge, glucose up just 1 point, and tumor markers stable. I have to go for labs every week for who knows how long. My veins are shot. Just went again today, no results yet.
I have managed to continue my exercise routine although I have to admit I feel fatigued. If it doesn't get much worse than this, I think it will be manageable. Hopefully it will work. My mets are all bone for now, would like it to stay that way for awhile.
Reach out anytime.
Best,
Stacey
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Hi Pots & Sbarronson (Stacey),
Thanks so much for replies!
I've only been on Piqray for 18 days now, but hair loss in my brush seems to be no more than it was on Ibrance, but I'm sure that could change the longer I'm on it. My blood sugars are good so far, maybe because I'm on a low-carb diet. I haven't gotten the rash yet (knocking on wood as I type this). I take Zyrtec before bed every night. I take Piqray with breakfast, I eat half of my meal, take the pills, then finish my meal. I make sure I take it with a meal, because if I eat too little, I start to feel nauseous. So when that happens I eat a snack bar and the nausea goes away. I haven't had to use the anti-nauseas meds yet. I know the pharmacist said you can take it with a snack, but I don't think that's enough to ward off the nausea.
Hoping this is good news....I saw my MO on Thursday and she sent my CA 27-29 out and called me on Friday to say that the Piqray appeared to be working. My level dropped from 873 to 585 in just 14 days on Piqray. My CA 27-29 levels have been correlating all along with my PET scans, so she is hoping this is a good sign - me too! This is the first time in 9 months that my level decreased instead of going up! Hoping that the level continues to decrease.
Stacey: I'm trying to increase my fluid intake also! In addition, I've been on the hunt for low-carb foods, especially for breakfast since that seems to be the most difficult meal. I normally don't care for greek yogurt, but my daughter turned me on to Two Good Black Cherry yogurt and its actually pretty good. I alternate with cottage cheese with strawberries and blueberries. I used to love eggs, but I had them so much in the beginning that I'm now turned off by them.
Thanks again for your advice! Wish you both the best!
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Should I really be starting Piqray?
I'm really confused about this whole thing. One year ago, when I was weakly HR positive, I had tissue taken from my axillary node. This was the only tissue available for the genetic testing because my two bone mets didn't have available tissue. So the TEMPUS testing last month only used my tissue from about 14 months ago. I think that's why they recommended the Piqray and Fulvestrant, as they assumed I was still HR positive. But it's not correct today. I am triple negative. And Piqray cannot be given alone without Fulvestrant. So why would I subject myself to painful muscle injections that serve no purpose? Why is my MO recommending it? Why wouldn't I try IV Keytruda which is specifically for triple negative, and especially for high TMB, which I have? I have been off all meds for two months and need to decide quickly. Help!! And Thank you!!!
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kitkit - sorry to hear of your dilema! Before I started Piqray, I had a similar convo with my onco as my ER status had changed to negative. He said that most of the time the insurance won't approve the treatment unless it's given with Fulvestrant or Femara as that's how Piqray has been studied and approved. It turns out my progesterone was slightly positive so that still points to a need for hormone receptor treatment for me. I've been on Piqray for about a month and a half and I haven't found the Fulvestrant shots that painful. For me, the nurses know all the tricks to make it easier on the patient (warm it up, a certain way to stand when they do the injection and also to go slowly).
Hope you're able to make a decision on treatment so you can get started. I know the waiting without treatment is so hard! I went almost 2 months while we were debating and waiting on results to decide between Piqray and Xeloda. Good luck to you
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Kitkat, I’m not on Piqray but do want to say that I was on Fulvestrant/Faslodex for three years. It was a very easy treatment and the jabs were nothing to be concerned about.
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