Piqray users, what is your experience?
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This week I had my first scan since starting Piqray and IT'S WORKING! The suspected bone met disappeared and everything else has shrunk. I'm still waiting for the PET report to post online so I can read the exact details but YAY!
But....unfortunately, my pleural effusion is still going strong. After my latest draining session on Wednesday, they said there was an air bubble around the top of my lung (I don't remember the medical term) and decided to keep me in the hospital overnight. It was my first inpatient experience since being born. Still hoping it will resolve on its own without needing a drainage tube...
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Parakeetsrule,
Congrats on your scans and I'm so happy that the piqray is working for you!
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Parakeetsrule:
So glad to hear that Piqray is working for you.😀
How are the side effects as that will be my next line? I will soon be having Y90 but currently on Ibrance & will be changing to Piqray soon. So many changes.😞0 -
Side effects range from nothing to severe. It really depends on each person. If you do experience any, they are usually manageable though. The most common ones are high blood sugar, diarrhea, skin rashes, and mouth sores.
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Thanks for your reply. Hoping this drug is easier than Ibrance. Probably wishful thinking. Main problem for me is fatigue. I will make sure I’m stocked up on meds to combat some of these side effects. Just in case
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hi everyone
I’m new to Piqray-I’m just shy of 9 years with mbc I had primarily bone tumors with a large progression to my abdomen last year. I’ve been on Piqray for almost 2 months and so far my glucose has shot up but is being controlled by metformin and had a whole body rash for a week which resolved with steroids and antihistamines. Besides that I feel pretty good-definitely not as good as I did on xeloda but not as bad as I thought I would either. I’m hoping my scans are stable in may. Hope you all are having a nice weekend!
Kristi
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Welcome! This thread is not very active but there are some of us Piqray people lurking about. It seems like a pretty boring (in a good way) drug for most people, with not much new going on once we get settled into it.
My first scan three months in showed a really good response so I hope it works quickly for you too!0 -
hi parakeetsrule!
Thanks for responding I’ve noticed it’s not the most active thread but maybe we can keep it going. I’m hoping for the same response on my scan. I’ve felt a response my abdomen which has been very distended has shrunk a lot but that could be attributed to the 18lb weight loss I’ve had in the last month as well. I’ll let you know how my tm’s are I get them checked this week.
Kristin
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How did it go, partyoffive?
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Hi what is the name of the Piqray facebook support group? I am stage iv and just started piqray after I was found to have the mutation.
Thanks
Sandy
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Hi
new here on the thread.
I will be starting Piqray soon hopefully within 2 wks. I was on Kisqali and then verzenio both had progression (bones and new liver spots) after a very short time (6wks) my onc tested for gene mutations (at my request - yes I'm pissed about having to ask, she dropped the ball on that) and I have PIK3 and MTOR or something mutation.
I am very excited to start this drug. All I want is to reman on one drug for 3 months and see if it is truly working. I was dx w/ stage IV Oct 2021 and ever since I've had colectomy, ovaries out, kyphoplasty, low ANC, 3 rounds of scans, high ALK PHOS, increased tumor markers and now I'm in the process of switching ONC because of her short comings.
Stability is what I crave I'm an accountant for pete's sake!
Hello everyone!tigre
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hi el Tigre
I was on 300/mg of Piqray for about two months-I did get a bad rash and my glucose elevated and I was put on metformin. Rash lasted about 2 weeks then resolved I started my 2nd month and felt like I got hit by a truck. My onc took me off of it a couple weeks ago to give me a break but I’m starting back up at a lower dose this week. I think if you are prepared for some of the side effects it could be a great med. i was so spoiled by my last meds and had no side effects and I didn’t start an antihistamine until I got the rash so stay in front of it. Good luck and let me know how it goes.
Kristin
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Thank you Kristin!
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Here's the group: https://www.facebook.com/groups/1699418116870066/ Be aware that this group includes people with other types of cancer, and men. It's not specifically a breast cancer group for women. Not a bad thing, but something to keep in mind when you seeing posts! I once got into it with a man there who didn't understand how breast cancer worked. 🙄
And welcome! I've been on Piqray since December and it's been pretty good so far. Let me know if you have any questions!
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Parakeeets,
Are you still doing okay on piqray? How long have you been on it? I am probably about to make a treatment change, and this one is on the table. I've not heard great things, and I'm not on Facebook (and as you know, there's not much info on BCO about this drug). So I thought I'd reach out to see what you had to say about issues, etc.
FYI, I did a consult recently at Memorial Sloan Kettering in NYC and the doc there said they are about to start up a new clinical trial for a new drug that's Piqray-like but without the side effects. She didn't elaborate, but did say that it would most likely only be a MSK trial.
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Hi Bevjen,
Don’t let Piqray’s potential side effects put you off. As with all of our treatments, some people get the short-stick and experience bad SEs but for others, it’s a breeze. The Facebook group that was linked above is a great wealth of information but feel free to ask questions here instead.
I’ve been on Piqray with fulvestrant since December 2021. I feel I’ve had a very easy time with it so far. I switched to a low-carb diet right from the start and I believe it helped me weather the blood sugar issues many people experience. My blood sugar has increased slowly over the months but not alarmingly so. I started taking 500 mg metformin with breakfast a few months ago and then added another 500 mg at dinner last month. This, along with a low-carb diet and regular exercise is working very well and keeping my blood sugar stable.
I haven’t experienced a rash yet but a lot of people do. As recommended on the Facebook group, I started taking an antihistamine a week before starting Piqray (1 12-hour pill twice a day). I have since cut that back to 1 pill a day.
Diarrhea is another common SE. Anti-diarrhea meds didn’t really do much for me unless I took huge quantities so I took Metamucil once a day after dinner and it kept me regular until my body adjusted to Piqray. After about a month, my body adjusted. Metformin can also cause GI issues
Nausea can be another issue but I didn’t experience a lot of that. I had some indigestion off and on for about the first month and then things settled down.
Some people experience weight loss. Much of this seems to be related to not feeling like eating or food not tasting good anymore. I’ve lost about 5 lbs so far but that could be related to exercise more than the meds. There are times when I don’t feel like eating my normal amounts. When that happens, I make sure I eat some good fats so I keep my calories up (olive oil, almonds, full-fat plain Greek yogurt, etc).
I hope this helps. Cheers!
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Hi! I'm still on it and coming up on my six month scan in a couple weeks. Still doing well with side effects. I had more in the beginning but now it's just occasional diarrhea and a new fun one: thinning hair! It's nice not having to shave my legs all the time though. Ha. For awhile I thought it was causing terrible fatigue but then I brought home two foster dogs and started going for regular daily walks, and the fatigue is going away! So weird how not exercising can make you so tired.
I still haven't had blood sugar problems or the rash. No sign of mouth sores since the winter either. I hope it keeps working for a long time because I feel pretty good. I'm still one of the healthiest people in my family. Lol.
I was just looking at the Piqray trial information today and it said only 25% of people stopped Piqray because of the side effects. So don't worry about it! There's an excellent chance you'll have only minimal or treatable side effects. And even if you do have bad ones, you can always stop it and then you'll know it's not a good option for you.0 -
The Facebook group has a document that may answer many of your questions if you decide to take Piqray. I can download it for you if you want.0 -
parakeets rule,
that's awfully kind of you to offer to download the document. I am not sure what my doc will decide on my next treatment. She is very high on enhertu, but for a variety of reasons, I may not be able to go onto that right now. My other option that we've discussed repeatedly is piqray, so I am just trying to do some research on it before we move that way. The nurses at my infusion center did NOT have nice things to say about the drug, so it's good to hear that you've done okay on it.
I'll be back in touch if we are heading piqray way. Thanks so much for your help.
BevJen
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Been on Piqray for 13 days now. I take a Benadryl at night and have not had any bad SE yet. I feel better on this medication then on Kisqali and Verzenio. I hope this med works for me.
FB group for piqray has alot of info on this medication and the SE as well.
tigre
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tigre,
Thanks for the information. Just had a Telehealth with my doc and it looks like I'm headed to enhertu. She is going to completely bypass piqray for now.
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My oncologist is thinking of Piqray for me, as he hasn't gotten approval from my insurance for Enhertu. (I'm Her-2 low, and FDA has not yet approved this for us.) He is on working on a third appeal, but I don't see much reason for hope.
Parakeetsrule, you mentioned a document from the Piqray Facebook group. How would I find that?
thank you, everyone here, posting their experiences. It helps so much when being asked to place one's faith in a new medication, after all the failures.
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If you join the group you'll have access to the file: Piqray and those with PIK3 mutations support group
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HI
I had my first CT and bone scan since starting piqray. 4mos on these meds have reduced my bone mets. My liver mets is another story, a few spots reduced but there are new lesions. My Onc questioned any symptoms I may be having from the liver mets but my symptoms are not present enough to switch my meds yet. She wants to give it a little more time and maybe the liver will play ball.
We also got a second opinion and that doc wanted to switch to some form of chemo due to new lesions in the liver and she wants me strong when I need to switch. After speaking with her and what our main Onc said she reluctantly agreed to have me stay on these meds but no longer than 2 mos for the next scan.
Anyone here get a mixed bag result from piqray?
tigre
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Hi I may be changing treatment but i was wondering if anyone heard of piqray and Enhertu (Trastuzumab) being taken together?
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Report of a PIK3 mutation in one of my liver tumors was finally sent by the lab yesterday morning, just in time to take a previously scheduled phone appointment with my doctor. Our call scheduled for the previous week had been cancelled because there was no new info. It has been 2 months of imaging and waiting for pathology.
I had a good 4 year run on Verzenio with fulvestrant for bone mets until an abnormal PET scan showed hepatic lesions. It was difficult to schedule follow-up MRIs despite my willingness to go anywhere in the area. The cancer centers all seem to be quite busy. Maybe people deferred routine screenings during the height of the pandemic.
El Tigre, I haven't run across that combination but only recently began looking seriously at options for my 2nd line. But, I know my young, inexperienced oncologist would not go for it. She is a very rigid follower of protocol and said that Enhertu is way down the list for me. Also, you may not want the doubling up of side effects.
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Vinrph
I very much agree with the SE doubling up. Just curious. I have never come across any thing like combining treatments, only in clinical trials that I hope are expanding to all of us on a more rapid basis
.That is awesome about verzenio! I hope that this next line for me is that long and I hope this piqray works for you for years to come.0 -
So, I started 200mg PIQRAY last week reassuring my oncologist that a dose escalation would be attempted once we saw how it affected me. An immediate jump in fasting blood glucose to around 300 bought me a prescription for metformin. To complicate matters, my husband tested positive for COVID.
Just mild symptoms Xmas Eve but he phoned his pulmonologist the next morning and of course had to leave a message for the doctor on call. When there was still no response hours later, I took him to urgent care only to have the NP on duty decline our request for Paxlovid due to concern about his kidneys.
While we were there, the MD finally connected with us and agreed with the nurse. Left to fend for ourselves, we decided to contact his nephrologist during office hours the following day. Being tenacious resulted in an antiviral Rx for the renal protocol (only 2 tablets instead of 3) that afternoon. Don't give up!
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vlnrph
Oh my goodness I'm sorry you and you SO had to go through that over Christmas! I understand the kidney thing but yes I am glad you stayed on it!. I'm sorry your blood gluse umped drastically right off the bat. I see that happen alot with Piqray.
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Thanks, El_Tigre. Not much activity on this topic over the past 6 months. Of course we've been in the midst of the holidays recently. With a PI3K mutation occurring in something like 40% of ER+ cases, it's a bit surprising. Perhaps people can't get genomic testing due to tissue sampling difficulties or what?
Maybe using fulvestrant as the anti-estrogen component is a problem (2 shots every 4 weeks). However, I find that treatment much more tolerable than AI side effects so don't even mind the needles. In fact, I retired from working as a pharmacist 10 years ago because we were going to begin giving immunizations.
If I wanted to deal with flesh and possibly have patients pass out in front of me, I would have gone to medical school like my sister. No, thank you. I'll stick with all those nice clean tablets and capsules. Don't put me near any blood or guts. It's ironic that I now have to stab myself with a lancet periodically…
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