Piqray users, what is your experience?
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Good news for me today, CT scans say bone mets stable and liver mets smaller. Nice b-day present as I am 63 today. Also, my car's odometer flipped to 1000000. (This used to be a big deal in the old days before they added that 1 on the left.) All that and a full moon too = an auspicious day!
Best wishes to all~
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jobur, stable is like winning the lottery in my books same with the word smaller!!! Happy Birthday!
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Jobur,
Great news on the stable and smaller liver lesions. Terrific!
Looks like I'm staying on Ibrance/faslodex a bit longer until they sort out what's actually going on with me. The MO is calling the radiologist to have him clarify his CT scan report from 10/30 because he says progression but I showed her past scan reports where the language was the same -- so it's an issue as to whether the changes are sclerotic/healing or if they are new developments. Plus, my TMs are dropping, so things are not exactly consistent. She did say that I'm probably going on Piqray at some point, though. So following you all!
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jobur! So thrilled to hear your news! I’m glad that the car and the moon are celebrating with you also.
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Pots, BevJen, and Nkb - thanks for sharing my happy dance!
BevJen - Good for you in pointing out the similarity in scan reports. Sadly, our mo's are often overworked and sometimes miss the little details that are so important to us. That's great if Ibrance/fas is working for you! I was on it for over 3 years so hope you can get a nice long run like that too. That is my issue with CT vs PET, I don't think CT can see lytic bone mets, only sclerotic/healing bone, and while it is unlikely bone mets will kill us, fractures due to lytic lesions can certainly kill our QOL. I wonder if the inconclusive CT result could allow you to appeal for a PET/CT.
Best wishes to all!
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Jobur that is fantastic news and Happy Birthday! I'm 63 too! So glad to hear the Piqray is treating you so well!!!!! What a birthday gift!
Your comment about differing mets has me thinking about MRI? I think this shows different sorts of mets too?
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Hey ladies,
Just came across this section of the forum and glad to find it! Will be watching everyone's experiences as I just started this new med yesterday. Hoping for a smooth ride. The last two therapies were killer for me. I am also on Fasaldax shots monthly. Sounds like most of you are experiencing just the normal (awful) things you get from all the treatments. Just looking to find something that works.
Luck to all of you. Love to see good reports.
Kathy
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Hi Moomla, Wow your pic looks great for 63! I feel like I look 73. Hope you get a birthday gift (or pick your holiday) like mine - stable or better. Yes, I think MRI is able to show both lytic and sclerotic bone mets. My MRI at original dx showed mets on many vertebrae. CT scan showed 1. Not sure how MRI compares to CT for soft tissue like liver/lungs. Guessing either one would be good.
Baywitch, I remember you from the A/A thread. Sorry it didn't give you a longer run, but fingers crossed we will both get more time out of this tx. A/A was not horrible, but my least favorite so far, I was actually glad to move on. Did your mo suggest starting an antihistamine like Claritin or Zyrtec to help prevent rash? That and high glucose seem to be the biggest problems for most. And of course, D and fatigue. Hope you are with me in the minority and don't suffer much from se's.
Pots, How are you doing?
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Jobur,
I want to chime in with my congrats too. It always gives me hope when I hear that someone is doing well on a drug. Also, happy (belated) birthday
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Laurie - Thank you! How are you feeling after your first week of Piqray?
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Jobur, I was lurking on this thread and read about your latest results. WOOHOO! What a wonderful birthday gift. I am doing the happy dance for you. I hope that you and others here have great success for a good long time.
Hugs and prayers from, Lynne
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Hello all
I am still waiting to find out what the next step is for me, now that Ibrance and Piqray have not done the trick. During the three months I was on Piqray, there was some progress but the next PET scan showed tumor progression. I haven’t been able to do anything re a new treatment plan yet because my platelets are very low. I am spending a lot of time getting transfusions. I have also developed ascites in my trunk area, which is putting pressure on my diaphragm and in turn, making it hard to breathe. A Paracentesis is also in my future.
Oddly, even though I haven’t taken Piqray in weeks, I still have the measles like rash on my mid section.
Six weeks until retirement. I am ready. It’s time to spend time just on me
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Jobur,
So far, I’m doing pretty well. I just got over a stomach virus which caused lots of nausea, and I’m not sure whether the lingering stomach issues are from PIQRAY or the virus. Otherwise, I am having very few issues (no rash, minimal fatigue, etc.) on this drug. I am really hoping this works, even for a little while. I have a bone met that’s pressing on a nerve in my back, so hoping it shrinks or goes away soon
How long have you been on PIQRAY? How are you doing?
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I recently had progression from my first line of Ibrance and letrazole after 34 months of stability. During that time for the first 20 months I was also taking Gedatolisib which is a pik3 drug taken through IV. I stopped it about 16 months ago because of the side effects and having to go every week to have an infusion. I have this mutation and my doctor has recommended the piqray/fulvestrant for my second line. I go on Tuesday to get my injections and will start the pill soon after. I was only bone mets until my PET scan last week showed a spot on my liver as well. I am 40 with three kids 10, 12 and 17 and married.
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All right ladies (I don't see any men and if I missed them, I apologize) I'm jumping from Ibrance to PIQRAY. I just received the call today after that One Test blood test (whatever it's called) results came in. I've read a lot of the posts and I guess there's no choice but to try this now...
What side effects? I'd rather hear from people that take this medicine than from doctors or other medical professionals.
Separately, someone wrote about measle-like symptoms on the trunk of their body, I had this the entire time on Ibrance...
Hoping everyone is doing well on PIQRAY. It's amazing that my MO called or predicted that I would have the mutation (don't know the scientific name) before I took the test.... But here I am. We've got this but have to fight some more!
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Hi jobur,
I'm doing ok...finishing cycle 3 soon. I have a CT scan next week so we'll see what's changed. I think I'm better at managing the SE these days. Lately it's been mouth sores, some nausea, now it's finger tip skin cracking. Ouch!
I have more energy on my good days. For those of you starting out, the first month was the worst for SE but after that things have settled. I got a flu shot last week and also a pneumonia shot...I hope I can head these off. I have Imodium, gravol, tums, Tylenol, and ginger ale ready in case I need them. I take a Claritin daily and Nexium 2x day to keep stomach acid down. So far I haven’t had the blood sugar problems many report. My appetite changes during the cycle and there’s a point where I’m not very hungry, I can’t eat much in one sitting...also watch out for dehydration if you get diarrhea. Yup pretty much everything goes right through...and then it stops and goes back to normal.
Be well,
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RedBerries - I'm so sorry to hear you are still having a rough time. Wish I could loan you some platelets. I hope the transfusions are helping you feel better. Yuck to ascites, they must be the pits. I'm glad you have retirement to look forward to and hope having that extra time to spend on yourself will help. Thanks for staying in touch.
BooBoo1 - Glad to hear your first couple weeks on Piqray have been mostly uneventful. I had a similar issue with a met pressing on a nerve. Had to walk with a cane for a couple of years, but Fas & Ibrance got me to NEAD and I am able to walk normally again. Is this your 1st time on Fas? It has been a great tx for me and I hope it will do the trick for you too.
Welcome Apg! I'm so sorry you had progression to liver after so many stable months on Ibrance and letrozole. I know that 2nd progression after months of stable comes as a real gut punch. It breaks my heart to see young moms like you having to deal with this crappy disease. I hope this tx will work for you for a good long time. Be sure to read the info from Pajim at the top of the Faslodex Girls thread, it will make the injections much easier. And thank you for mentioning Gedatolisib. I have not heard of that drug and will have to check it out. Take care.
njgirl13 - Welcome to the thread! The mutatuion this tx is supposed to work on is PI3K and it is apparently pretty common among those of us with MBC. Main side effects seem to be rash, high blood sugar, diarrhea, nausea, and of course, fatigue. Like always, you may have all, some, or none of these. My worst se has been killer heartburn, the kind that wakes you up at night. Omeprazole helps, but I need to eat Tums sometimes too. (More about the measles like spots below.) Hope Piqray is tough on your cancer and easy on you.
Pots - Good to hear things have settled down and you have gotten better at managing se's. Hmm, finger tips cracking, that is a new one. Hope some heavy duty hand cream will fix it. I will keep my fingers crossed that next weeks scan will give you some good news. Do you have to wait long for results?
I am on my 5th cycle of Piqray and just had a "stable" CT. My main se's have been bad heartburn, fatigue, and a rash mostly on my legs and arms with a few spots on my back. Just had a punch biopsy at the dermatologists to determine just what it is. I will post, maybe with some pics, when I get the pathology report. It mostly does not itch but looks awful.
Best wishes to all!
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So I will be joining you all here on this thread. My liver biopsy has the mutation and this drug will hopefully help. I hope we are all successful with this new drug. Lisa
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Add me on to this list! I have the pills and I got my first (well, 50th or so) set of Faslodex shots. Traveling next week so I'm holding the pills until I return. I don't want to end up in an ER in San Francisco.
The nurse made some mention of buying and using a glucose monitor. She's supposed to call me to discuss. Was anyone else asked to do that?
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Well, I am no longer taking PIQRAY. I was 3 weeks in, and started feeling really bad. Had flu-like symptoms, fever, big nausea, and woke up with a mouth of sores. One of my toenails even fell off. I called the answering service and they said to stop the drug until I can see my onc. It only took 24 hours from the time I stopped taking it to feel much, much better. Almost feel like myself again.
Hope you all get better results than me
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Welcome Mediclisa! I hope this tx will be good to you. I'm wondering why you edited your post, that was good info your spec. pharmacist gave you. I see you are in St. Paul. I grew up in Mpls, now live 2 hours east in WI. it's nice to see a homegirl here. Please keep in touch and let us know how you are doing.
Hi Pajim and welcome! How is the rehab going? I was not told to buy a glucose monitor, but I had labs every 2 weeks for the first 2 months and they checked A1C and glucose, so maybe it depends how often you have labs? I hope you have a wonderful trip to SF, you surely deserve to have some fun for a change.
Laurie, I am so sorry you had such a bad reaction to Piqray. I'm glad you are feeling better. Being as how you made it 3 weeks before getting sick, I wonder if a lower dosage might help. I hope you and your mo are able to find a tx that works without making you ill. Wish you all the best!
I got the path report from my punch biopsy this week. My "rash" is granuloma annulare. I had this before when I was first dx'd. It took over a year to go away. It doesn't itch or hurt, so I can live with those ugly spots as long as this tx is working. Starting cycle 6 next week and I am feeling good. Wish that everyone could have my good luck.
Apg, njgirl, and Pots, how are you?
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I'm sorry booboo that it didn't work out for you. I am hoping the next treatment will be successful. Jobur - I took it out as I thought it was to long - I will edit it a little and repost it. You must not be to far from me - I raised my kids in Frederic, WI and moved to MN to take advantage of the medical marijuana program - it didn't work for me. I still have a place in Frederic and go there on weekends. I still work on the community ambulance there. Working a 48 hour as I am posting this. I'm glad to hear about your rash - not looking forward to that side effect. I am hoping to be as successful as you!
Welcome Pajim - I am going to start the 2nd week of December as I am going to Chicago next weekend and yes, don't want to be on a plane or walking around with those side effects that seem to be what people are having. Uugh. I will re-post what my specialty pharmacist sent to me - I didn't know I had a care team. He really went over and above his role which was very nice. Hopefully, we can put his notes to good use. Does anybody else take two drugs? I am taking Lestrozle with the Piqray as per the study. I hope everybody had a good Thanksgiving. Lisa
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Here are the notes from the specialty pharmacist. Sorry so long....I hope any of this will help you all in your symptoms. Lisa
A couple practical recommendations regarding albelisib treatment:
- alpelisib treatment is thought to work synergistically with fulvestrant (per labeling) or letrozole (per ongoing study)
- Current studies have found rash and hyperglycemia to be treatment limiting toxicities
- For rash, I recommend nonsedating antihistamine once daily starting the day before alpelisib and continuing for at least the first month of treatment. If rash develops, increase this dose to Q12-hour dosing. This hopefully will prevent rash and also the need for corticosteroid treatment which would exacerbate...
-...hyperglycemia which should be closely watched. Might be a good idea to get an HbA1c if you haven't already, and monitor closely during treatment as recommended by the mfg. Metformin should be considered if hyperglycemia presents, and is otherwise appropriate.
-Diarrhea is also common, and I recommend Lisa have loperamide on hand so she can treat it quickly.
The question that remains, in my opinion, is whether alpelisib + CMF + letrozole will work as effectively or safely as alpelisib + fulvestrant (how it was studied for its current labeling). I reviewed the original study the SOLAR-1 trial, and Lisa would have been excluded from that trial.
However, an expanded study called BYLieve opened up its inclusion criteria to include treatment histories closer to that of Lisa's (hx of CDKi, hx of Chemo, hx of ET). The treatments arms were as follows:
Patients with prior CDKi + AI were given ALP and Fulvestrant 500mg Q28 + C1d15 IM
Patients with prior CDKi + Ful were given ALP and Letrozole 2.5mg once daily
This trial is still ongoing and interim data has been released stating "Pending further readout of the ongoing BYLieve trial, safety and tolerability of ALP and hormonal therapy in pts with prior CDKi are consistent with those of SOLAR-1; discontinuation due to toxicity was rare".
I am going to contact him about taking the drugs together - someone also takes Letrozole at night - limits her side effects. If anybody is taking this with Piqray - I will let you know what he says. How do the rest of you take Piqray - morning, afternoon or evening? Lisa
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I am on the Bylieve trial -Faslodex arm. We are told to take the alpelisib in the morning with 8oz water within an hour of eating. I find that I eat about half my breakfast then take the pills with water and then finish eating. This seems to help me avoid nausea, severe heartburn.
Booboo, I had to take a 2 week break during the first cycle b/c of the SE which were truly nasty.When I restarted back at 300mg, the SE were more manageable and now at the end of cycle 3 even better. I think the challenge is to get through the first cycle so I would urge you to speak to the MO and try again. It does get better.
I see the MO on Monday to get CT scan results. I have more energy these days so fingers crossed.
Be well,
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Thank you, Pots. I see my onc on Thursday, so I’ll see what she has to say. Appreciate knowing it may take more than one try
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Lisa, Thanks for reposting the spec pharm notes. I'm sure others will find this helpful. While rash is common with this drug, I don't think granuloma annulare is typical, maybe just a weird se for me. It's not like the rashes I had on Ibrance where you break out, itch like crazy, then it goes away. Fredric is a nice little town, I bet it was a great place to raise your kids. Funny that we swapped states. I now live outside of Chippewa Falls, but still go to the cities to visit family and friends. You must be super woman to be working so many hours while dealing with MBC!
Laurie, I thought about your symptoms yesterday and remembered that I got really sick too about 4 weeks in. I had my last loading dose of Fas and denosumaub on a Tuesday. Started feeling like crap on Wednesday, fever, chills, and a headache that would not go away in spite of drinking a ton of water and taking Tylenol. I rarely get headaches. What really freaked my out though was my eyes were very red and it felt like my eye muscle were sore. And the inside of my lower lip broke out in painful white sores. It was bad enough that I called and scheduled an appointment with my mo, but kept taking Piqray as no one told me to stop. By the time I went to my appointment the next week, all had gone away except for the mouth sores. So long story short, maybe your experience was similar to mine and you may not want to give up on Piqray just yet. As Pots said, the first month is the worst, after that se's get better. Hope a short break is all you need.
Pots, Good to hear from you and so glad you are finding Piqray tolerable. I think taking it in the morning with breakfast to reduce nausea and heartburn is good advice. All digits crossed that you get good results from CT!
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Pots, I wasn't sure when to take the two drugs, so I asked the specialty pharmacist and told him of your experience. This is his response:
"You can take the letrozole and alpelisib at the same time of day or separately, as long as you try to keep timing generally consistent. If taking the letrozole in the morning or mid-day is preferable for you, you can start taking it that way and then switch to bedtime dosing if you notice day-time side effects. Just don't ever take 2 doses on the same day.
Sometimes people get some muscle pain or bone pain from the letrozole. Hot flash symptoms are also common. There are other side effects as well. Please report the side effects so they can be managed. It's possible that taking letrozole prior to bedtime may help you sleep through some symptoms, but it's probably more of a personal response. Not all patients will have all side effects."I am a little nervous about starting this drug, not sure why. I have always gone into all the drugs head on and not worry about the SE's. Probably the nervousness is when I had radiation to my sacrum area, changes happened. I sometimes have to "run" to the bathroom. Will see - I hope I have the same reaction as some of you as being tolerable. I am starting on the 10th as I will be taking a short weekend vacation to Chicago. I am going to take your advice and take it in the morning as I already have heartburn and hopefully will also alleviate that. Take Care...Lisa
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Hey Jobur,
Thank you for responding to my questions. That was really kind of you for asking how I'm doing. So I haven't started yet because we're waiting on the insurance approval. I should be starting next Monday. Unbelievable how slow this process can be.
It sounds like you're doing well and have an understanding about the rash. I also had a rash and itched like crazy when I was on Ibrance. The itching wasn't as frequent, but the rash on my trunk just finally went away last week. I also appreciate you sharing what you're doing to deal with the side effects. Heartburn can be a real pain.
I'm also doing radiation for my bone mets. As of recently, I've experienced discomfort, and I really hope this does the trick. Today was my first of 10 sessions. This disease is like another full-time job....
Mediclisa,
It appears you and I will be starting the same time. I am also a little nervous but feel like that's expected. Reading these side effects can make anyone concerned. I hope you enjoy your weekend vacation.
I will update you all on my progress. Have a great evening and hoping for great results for all.
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njgirl13 - good to have a buddy to do this with from the start. I hope we have a good experience like some of the others here with the side effects. I have all my vomiting, diarrhea, heartburn medications lined up like solders, ready to start on Tuesday. Have you decided when you are going to take it? Are you adding any other drug to the Piqray?
Booboo1 when did you take it? Hopefully tomorrow's appointment will have good news for you. Jobur what about your dosing regime - 5th cycle - doing good. Pajim sounds like you will start next week after San Francisco?
Pots hopefully you had good news with your scans on Monday. Lisa
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Hey Mediclisa,
My perscription came today. So I am waiting until Monday when I have an appointment with my MO. For whatever reason, the radiation to my spine has caused nausea, so I just came from the pharmacy and am taking anti-nausea meds as I type. My RO said that this was rare and unexpected. Well, if you know me, I always get the unexpected... I'm that 1% of the population impacted by (insert situation) person...I really prefer that count for the lottery, lol.
I will be getting a Femara shot on Monday. It's a shot, right? I get more needles for Xgeva, some other hormone suppressant (can't remember it right now). I will be your buddy on this ride. I hope you and everyone else are doing well.
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