Piqray users, what is your experience?
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Hi Mountain Girl,
Checking in on how you are doing with the Piqray. I am still finding the inability to eat and fatigue to be the two worst side effects. How are you doing with the side effect?
Red berries
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Hi ladies,
I started Alpelisib (piqray with Faslodex last week. It seems like the fatigue and diarrhea come in cycles (for a few days) and then dissipate. Is that what you're seeing too? Is anyone having headaches? What about a tingly tongue...things don't taste quite right. I'm losing weight too..on the fatigue diarrhea days just not all that hungry, other days are fine.
Be well,
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Hello Pots,
Welcome to the thread. I too experience fatigue and diarrhea in cycles. At first, everything had that distasteful metal taste, which caused nausea. The metal taste is going away slowly, but after three months i don’t notice it as much. I am still way too thin but the weight loss started while I was on Ibrance. Trying to gain some, a pound at a time.
Red berries
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Well, it’s reassuring that things get better as you go along. I had to stop the 300 mg/day dose on Day 15 for 2 weeks due to the SE to let me recover. I had a perfect storm of skin rash, inflamed GI tract, possible UTI, terrible fatigue...the list went on. I too am finding it hard to eat, especially on days where the skin rash, headache and pain from inflamed GI tract was worse. My taste buds are off, feels like my tongue is prickly. What dose are you on?
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This thread has been very quiet. How is everyone doing?
I am now in my 4th month and feeling really good most of the time, but do get fatigued in the afternoon after an active day. Worst persistent se for me has been killer heartburn, still trying to find something to alleviate that. I've also developed a weird skin thing that looks like measles (it's not). It's mainly on my legs with a few spots on arms and torso. Doesn't itch, just looks ugly and doesn't seem to be getting worse or clearing up. I can live with that. 1st scan since starting this tx is scheduled for Nov. 4. So hoping for good results as I really like this tx.
Hope my fellow Piqray users are doing so well they don't have time or reason to post! Best wishes to all.
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This thread has been very quiet. How is everyone doing?
I am now in my 4th month of Piqray and fulvestrant and feeling good. The most persistent and troublesome se for me has been killer heartburn. Still trying to find something to alleviate that. I've also developed a weird skin thing that looks like measles (it's not), mainly on my legs with a few spots on arms and torso. Doesn't itch and doesn't appear to be getting better or worse. I took Claritin the first 3 months but decided to try going without this month, so far so good. (The spots appeared when I was still taking it.) I do get fatigued by late afternoon if I have had an active day, but all in all, this has been an easy tx so far. First scan since starting Piqray will be Nov. 4th, fingers crossed that it's working!
Hoping everyone else on this combo is doing well.
Pots, especially hoping to hear that your perfect storm of se's has subsided. The first month of a new tx is always tough. Hope month 2 has been better.
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Good morning Piqray ladies,
It has been a while since I have posted. Had to have another blood transfusion as my red blood cell count dropped notably. I don’t know whether that is Piqray-related or just part of the metastatic experience, but two units of blood made a big difference in my ability to breathe and with fatigue. Still tolerating the Piqray fairly well. Jobur, I took have developed the measles-like rash on my torso. There are occasional bouts of nausea.
Having another PET scan next month. My CA 27.29 has been steadily creeping up, though this month the increase was less. Never look forward to the PET-result induced anxiety.
On a positive note, I have decided to retire at the end of the year. It’s time, and I would rather spend my time on me and my family. Counting the days
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Red Berries, Glad to hear from you! Sorry you have experienced low RBC, but happy to hear the transfusions helped with fatigue. Do you have lung mets or shortness of breath for another reason? I hope your appetite has improved and you are able to enjoy eating again. Are you taking Claritin or Zyrtec for the rash? Congrats on retiring at the end of the year! I'm in my 6th year of retirement and I love it!!!
Mountain Girl and Pots, are you still on Piqray? Hope after the initial adjustment you are feeling better.
Best wishes to all.
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Anyone on Piqray with P13K and FGFR mutations? Theres a lot of literature about FGFR mutations reducing PIQRAY's effectiveness. I Was just wondering if anyone has . had at least partial success with PIQRAY with both mutations present. Thanks in advance.
Love,
Ann
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Congrats Redberries on deciding to retire. I don't miss work....I'm on LTD until June 2020 and then officially retired. I find I now have time for me...and all the medical appointments.
I'm almost half way through cycle 2. Skin rash has settled down, some days the fatigue is certainly more noticeable and lately I'm noticing more nausea and diarrhea. It didn't help that I either picked up a stomach bug or ate some tainted meat last Sunday and have been kicked hard. I'm just now starting to eat again after losing 10 pounds. I can’t tell which is piqray SE and which is stomach bug....misery has been about the same. Lol. I’m encourage that many of you have found the SE to calm down as you go along....fingers crossed. I see the MO on Wednesday to check bloodwork.
Be well
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Hi Jobur,
I don't have lung Mets, so the shortness of breath is just connected to the low red blood cell count.
I am really looking forward to retiring, now that I have made the decision to do so. Not the way I expected to end my career, but I am fully at peace with the decision. There’s a lot to do before the end of the year, but it is all coming together.
RedBerri
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Hello! I am looking for some advice or encouragement as my oncologist switched me from Ibrance to Piqray after my cancer showed signs of progression (small, but there’s an uptake in a couple of areas). I was on the 300 mg dose for 2 weeks with the only side effect being fatigue and loss of appetite. After 2 weeks, I woke up with a severe rash all over my body. I was taken off the med and was prescribed prednisone which calmed the rash. My oncologist wants me on a high dose so I just took my first 250 mg. Has anyone had something similar happen? I really want this med to work for me. Thank you!!
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ann273 - Apologies for not replying sooner. I checked my Foundation 1 paperwork and I do not have the FGR mutation. Sorry for the non-help, but good luck in your research.
AnnBR - Welcome to the Piqray group! If you read the posts above from Pots, she had a similar experience with a bad rash and subsequent 2 week break. Hopefully your mo told you rash is a common se? Did anyone suggest taking an antihistamine (Zyrtec, Claritin) to help prevent it? I hope you fare better on the 250mg dose. Please keep us posted as to how you are doing and what other se's you may have (I hope they are few).
Redberries - How are you? Hope your RBC has rebounded and you haven't had to have any more transfusions. Do you have scans soon? Fingers crossed you will have good results despite rising TMs.
Pots - Hope you are over whatever was ailing your tummy and generally feeling better.
Have any of you been taking Claritin or Zyrtec to prevent rashes?
Best wishes to all~
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Welcome AnnBR! Hi jobur!
I had a similar issue with a rash around Day 13, stopped the piqray for 2 weeks and then restarted at the the same dose (300 mg). I take Claritin daily now and haven’t had any more problems. After that nasty stomach episode, things have settled down and I hardly notice any SE.....some days I get slight nausea, some days a bit of the trots but nothing bad, some days more heartburn. I also take Nexium twice a day to keep the stomach acid in check. Generally it feels doable.....lol, now that I’ve told you that it could all go sideways. I start cycle 3 on Monday so bloodwork and get a Faslodex shot too. I asked to get tumour markers tested to see if anything has gone down since my last test in August. My next CT scan is at the end of November.
I’m back to doing the things I love....make pottery, playing with the grand kids.
Be well,
An
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Hello all,
I have had quite a week. Became weak and disoriented on Monday, including taking a fall from dizziness. A blood test showed my kidneys were hardly working. I was admitted to the hospital and just got out last night. My kidneys had all but stopped working, which was apparently due to dehydration and diarrhea caused by the Piqray. I am now sporting a Foley catheter (it comes out on Monday, thankfully).
No more Piqray for me. I will find out on Wednesday what the next step is. Between that and a PET scan on Monday, my anxiety level is pretty high. Disappointed as this is the second failure of treatment for me (first Ibrance and now Piqray).
Hang in there with your Piqray use.
RedBerries
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Hi RedBerries,
Ugh....this drug is not treating you kindly. Glad you got some answers as to what is going on.....sigh, makes the list of SE very real. If it consoles you at all, I am on my 4th drug combo in 30 months. Ibrance and Faslodex, Taxol, exemestane and now alpelisib/Faslodex.
Please keep us posted on what you go to next.
Be well,
An
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RedBerries - I am so sorry to hear about your fall and hospitalization. How is your kidney function now? I hope the kidney problems are reversible and you are back to normal. When will you get your scan results? I hope Piqray was as hard on your cancer as it was on your kidneys. If your scan is good, would you and mo consider continuing Piqray at a reduced dose? Just a thought. Hope you are feeling better and your next tx is kinder to you.
Pots - Glad to hear you are feeling better after your rough start on this drug. Hope it doesn't go "sideways" and you can continue doing what you love.
I will be having my first scan since starting this drug next Monday, results on Tuesday.
Best wishes to all!
Edited to remove whining/
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Hello to all. I may soon be joining you. I have been on Ibrance/faslodex only since July but my scan last month showed some progression (very slight) and my medical team is suggesting a change of meds (in my mind, a bit premature). First drug they mentioned was Piqray because I have the P13K mutation. My immediate reaction? I asked if that was the diarrhea drug, because I am a university professor and don't exactly relish running from the room while teaching if the drug hits me that way. They also offered an immunotherapy trial because of another mutation that I have. So trying to sort out all right now.
Thanks for all of your posts about your experiences on Piqray. This is so helpful for someone like me in making my decision.
Bev
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Greetings BevJen,
I started Piqray in June after a failed course of Ibrance because my tumor has morphed over the years from hormone positive to the equivalent of triple negative. I did not have an notable SEs at first, other than continued weight loss. However, the cumulative effect soon took its toll. In the last month I developed significant diarrhea (like you, it was not fun dealing with that at work). I also started vomiting a lot. My kidney function decreased to the point where I was hospitalized last week with kidney failure. Thankfully, all is working down there again after four days in the ICU and tons of liquids. It will suffice to say no more Piqray for me. I am having a PET scan tomorrow and will find out next week what the next recommended course of treatment is. Unfortunately, I suspect it is classic intravenous chemo.
I think the longer Piqray is on the market the more we will hear how it affects those who take it. I am sure there are many who are doing fine on it, but my experience did not end well.
RedBerries
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Dear RedBerries,
Thanks for your information. I did see your previous posting about being in the hospital, and I just held my breath at that one. How awful! I'm glad that you seem to be on the up side now.
Good observation about the longer the drug is on the market, we'll see what happens. I am having trouble explaining/convincing my current medical team of some weird things that have happened to me on Ibrance -- their standard response is: that's not in the listed side effects. Not helpful. It's in MY listed side effects because it's how it affects my body. Doesn't inspire confidence at all.
I hope you continue to improve. Good luck!
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Bevjen- have you considered Afinitor? It seems more tolerable and does work if you have a PIk3 mutation. You must do mouthwash for 2 months to prevent mouth sores. Diabetics do seem to lose weight on Afinitor. It does cause blood sugar issues for many- but, so does piqray.
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Hi BevJen, I see you have been at this MBC stuff since 2006?! Congrats on your longevity, but also sorry as you must have been very young at original dx. You mentioned that your last progression was very slight. Perhaps you might wait until a break at your university to make the switch to Piqray? At least that would give you a few weeks to see how it affects you and get a handle on dealing with any ses. Diarrhea and rash are very common with this drug, though I have been fortunate to have neither. Were any other txs suggested by your care team? (I'm thinking A/A.)
Good luck on making your decision.
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Dear Nkb and Jobur,
Well, great minds think alike. You are both talking about A/A in your messages. That was not mentioned at all for me. The other thing that was mentioned was a trial of Tecentriq (an immunotherapy drug) because oddly, I have a TON more mutations in my cancer per Foundation One than most breast cancer patients. I think a "high" number of mutations in BC is about 8 -- I have over 25. Wow. I won the lottery!So that's my current dilemma.
Jobur, my original diagnosis was in 2003 at age 51. My first mets diagnosis was in 2006. That was a weird one -- breast cancer cells were found on a polyp on my cervix during a routine gynecological exam. Out came the polyp, the uterus, the tubes -- everything. No other evidence of cancer. Was on letrozole for 13 years until progression this past May. So even though I've technically been metastatic since 2006, this is the first time I've really faced it on a more widespread basis.
Thanks to you both for your thoughts. I'm supposed to be meeting with the oncologist later this week or next to discuss in further detail and I'll bring up the A/A combo and see what she says (I only met with the nurse practitioner yesterday -- that's another story by itself.)
Bev
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RedBerries - Relieved to hear your kidney function returned to normal! You must have been terribly ill to have to spend 4 days in the ICU. Happy you were able to come through that, it must have been very scary. I'm sorry, I don't remember, have you already done Xeloda? I hope your docs come up with something tolerable for you. Sorry Piqray was not it.
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Hi All,
I just started PIQRAY yesterday, so I will join you in discussions here about progress. I have to say I am very nervous about this drug. I am at a point where I have considered stopping all drugs, and letting nature take its course. I am so tired of all of the side effects from these drugs. I don’t know how an oncologist can talk about QOL and prescribe this drug at the same time. But I will at least give it a try, and see how it goes.
I, too, have not had success with the last three drugs (Xeloda, Faslodex, iBrance), so fingers crossed I can tolerate this one, and it works.
I am seeing a palliative care nurse this coming week to see what my options are. I think there are a lot of things that could help (massage, Reiki, etc.) if I had access to them.
Thank you so much for starting this thread. It is so helpful for those of us who are new to Piqray
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Hi Laurie and a warm welcome to this small group! I hope you will be spared some of the bad se's others have experienced with this drug and that this one will work for you. Have you started taking Zyrtec or Claritin? Fingers crossed an antihistamine will prevent or lessen rash. Assuming you have had genomic testing and have the PI3K mutation? Wishing you all the best and hope you will let us know how you are doing. (I love your user name! It's our nickname for a favorite niece.)
I have my 1st scans since starting this tx tomorrow, results on Tuesday. Starting to get a little anxious. I haven't given much thought to having to change tx again, I'm just hoping Piqray is working.
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Hi Jobur,
Thank you for your warm welcome.
Yes, I’m taking Zyrtec. The only side effect so far is nausea, so I take Zofran first thing in the morning, and that seems to take care of it. I’m hoping I don’t get the rash. That doesn't sound very fun.
How long have you been on PIQRAY? Please let us know how your scans go. I am right where you are with drugs failing me, so I’m really hoping to get a good progress report on my next scan
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Welcome booboo,
The first month was no fun especially from day 13 on. Cycle 2 was a bit easier or maybe I was ready for SE. Cycle 3 seems to be going along relatively smoothly, mouth sores this month. Maybe I’m just better at managing the SE now. I still get inflamed mucous membranes that present like a UTI and coughs but on the flip side I also have more energy now.
Be wel
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Hi Pots!
Thanks so much for this update. I am only on day 5, and so far, no big SEs. I am hoping it stays that way.
But understanding how everyone else is tolerating this drug is SO helpful.
Stay well
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Public Service Announcement/Cross Posted:
Does everyone know about the webinair tomorrow night sponsored by Living Beyond Breast Cancer? It's at 6 p.m. EST -- if you go to their website you can still sign up. It's about metastatic cancer treatment choices and side effects, and there is some kind of a participatory Q & A session.
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