Piqray users, what is your experience?
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Thank you, emac. When I had my first test with Guardant360 in 2021, it showed only the ATM mutation. Now, with the new mets it's showing the PIK3, plus the ATM. There is some other stuff I don't understand. I have an appointment with the Oncology Genetic Counseling center on the 15th and I just got a message about participating in some kind of study where they bank your blood and biopsy specimens for research. I think I'm going to do that.
The other thing is that my most recent biopsy came back as ER-, but my MO thinks that may be a mistake, so we're going to assume I'm still ER+ and see how this treatment (Faslodex) works. I'm really hoping to avoid the Piqray, if at all possible.
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@sunshine99 hopefully this new genetic finding will allow you more options moving forward.
Sending gentle hugs to you and @emac877
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Good afternoon everyone. I'm having a really difficult time, kind of really upset and don't know what to do. My scans on Dec8 show more bone progressions so I have to switch off of my first line treatment of Ibrance/Arimidex. I recently had a liquid biopsy that has the PIK3 mutation. My MO first suggested Piqray, but I've read all these horror stories about it and really didn't want to try it. I found the new drug, Truqay, and brought the research to my MO. He agreed with me to try that drug with Faslodex. However, he cannot get the drug. I'm in the military so I get my drugs from a DOD pharmacy and no DOD pharmacy has this drug, as it is so new, and will likely not get the drug in the immediate future. So my MO called today to let me know all this and to push Piqray again. I don't know what to do! I'm scared of this drug and what it'll do to my QoL. I don't want to be diabetic on top of the cancer. Can someone talk to me about their experience and give me some advice? Thank you!
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Katyblu - I can empathize with your concerns. If this is the course of treatment you have to take my recommendation is to start diabetic meds at the same time as the Piqray. I didn't start them until about three weeks afterward I am now on Jardiance and Metformin. My sugars are still high so I am being referred to an endocrinologist as I didn't tolerate it when my PCP tried to add Rybelsus to that equation. I think I have had a harder time side effect wise with the diabetic meds. The Piqray itself seems to effect everyone differently. I have been on it since June and tolerate the 300 mg dose well with the blood sugars being my biggest challenge. They do have lower dose options so that might work better for you too. I had to fight my insurance hard to get coverage for Piqray. I'd love to switch to one of the newer ones but also don't want to give up on a line of treatment that is currently keeping me stable.
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Thanks emac! I appreciate the tips. I think I'm just so overwhelmed with everything, especially with this happening during the holidays. As if I'm not stressed enough haha! It just seems like I'm going to have to change my entire life for this drug and I'm just not ready for that. Talking with my husband (he' trying to "solve" the problem while I sob on the phone about all this), he said we'll just have to completely change our diet and add in exercise. I don't mind exercising, we were avid gym goers for the longest time, it's just been a little while since the mets to my left hip have hampered my movement. But going basically keto is not what I want to do. I like carbs and I like sugar. I like eating a variety of things. Piqray sounds like I'll have to eat the worst kind of diet. Plus I hate the idea of pricking my finger every day to check my sugars. I'm sorry…. I'm just ranting and talking about all the things I don't want to do. Cancer has taken just about everything from me and I just don't want to give it more. I mean, what did I do in life to deserve this?? I am so angry and hurt.
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Katyblu - I get it. My mets were first discovered in my right hip. It's a lot. I agree you will probably have to change your diet some. I love sugar and carbs too. I don't check my sugars three times a day and know myself well enough to know I'd last maybe a week on keto. I just tried to really focus on eating real food and less processed foods. I have mets to the lungs and so I can't exercise as hard as I used to but I noticed even mild effort walking has helped keep my sugars lower so it sounds like you are on the right path. This whole disease is like a slow leaking loss. I think you just have to feel what you feel and take it a day at a time. Nobody deserves this disease. It's every bad word I can think of. Hugs to you and I hope you can enjoy Christmas and the New Year despite it all.
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Thank you emac, I really appreciate your time. You're right, I just have to live it one day at a time and see how things go. Maybe I can start this drug soon and also get a second opinion in the civilian market. I'm just overwhelmed and scared. But it's good to know that it's working for you even though it can be difficult. Hugs and Merry Christmas!
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katyblu
I was on piqray 300mg for 6 months. Yes the side effects are not good but my pet scan after the first 4 and a half months showed it was actually working. It did affect my mouth and gag reflex and could not eat. I also lost 30 pounds in 6 weeks. The yeast infection in my mouth has been bad. They finally prescribed magic mouth and it is helping. I also choose to continue taking piqray at 200 mg because I have a pic3 mutation and it had showed good results in a short time. Hopefully this will let me go back to eating and discontinue my pic line and TPN. Piqray also has a program that you may qualify for, your doctor should be able to tell you about it. Hopefully this helped and some of Piqray’s side effects will slip up on you especially the mouth sores.
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Katyblu,
I'd push back on your oncologist about the availability of the newer drug. My wife is a tricare beneficiary as I am on active duty and she gets seen by an oncologist at the Army hospital here. Her monthly appointment was last week and I asked her doc about the availability of Truqap in the Army pharmacy (not because my wife needs it but because I saw your note about running into problems). He was unfamiliar with the drug but did say that if it's FDA approved they should be able to get it. It might require you obtaining it from a non-DOD pharmacy and paying a co-pay, but if your doc will write the script you should be able to get it filled. It could also be that they are trying to use the older, probably cheaper option first (Piqray) before approving the newer, more expensive one. I don't know if Truqap is more effective than Piqray or if it just has fewer side effects, but that is usually part of the analysis.
But I wouldn't take, "our pharmacy can't get it so you can't get it" as the final answer.
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Bighubs and al - Thank you for the additional information. I'll keep an eye out for side effects on Piqray. And a user on another thread mentioned Express Scripts as a possibility. I'll talk to my MO about that, especially if things start to get bad. But….
Tomorrow, 5 Jan, is my first day of treatment with Piqray and fulvestrant, so I'll see how that goes. But my doc called me today to give me the results of my recent biopsy. It seems that my hormone positive status might have changed to negative. My MO said that my estrogen markers had no internal controls, but the external controls were "appropriately positive." He says this is an indeterminant result, but it could mean that I am triple negative. I'm currently freaking out in my weird way. I was actually in the airport when he called and when I turned to tell my husband I burst into tears, so that was fun…. We decided to keep on our current treatment plan and scan in three months, if not earlier. If there are issues at that time, we will re-biopsy and re-evaluate. But I know there isn't a lot out there for triple negative. Sigh…. what a way to start the new year….
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First day of treatment complete! I got my shots this morning and just took my first dose of piqray with my lunch. So far, so good. Just a bundle of nerves. I hope this works and I have minimal side effects.
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Katyblu, thinking of you and hoping for minimal SEs. Did they tell you to get some Immodium, just in case?
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No, but I read it could be a problem so I have some on standby. Thanks!
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Does anyone here already have issues with constipation? I need MOM to help me poop. I'm jealous of my DH who poops regularly. It must be nice! I never heard of "poop envy" before. 🙄
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My first day did not go well. I had extreme nausea and a mega headache, plus I could not keep my eyes open for anything! I just felt bad all day! Today I’m doing much better though, a little nausea and a smaller headache. I can function though, so that’s a plus!
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Hang in there! I have had continual nausea but don't remember the rest of it. It seems to hit everyone different. The blood sugar issue didn't really kick in major for me until about two weeks in. I got added Metformin and Jardiance and that seemed to make the nausea worse. It might be worth asking about an endocrinology referral.
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Thank you! So far I’ve been okay, just some light nausea and a small headache every day. I’m really hoping I’m the 20% who doesn’t get hyperglycemia 🤞🏻
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Hello everyone! So it’s been almost 2 weeks. So far it seems like my only side effects are nausea and a mild headache. It also seems like my taste buds have gone off. Some things taste metallicky, like during chemo. And my appetite has kind of decreased. Anyone else have those symptoms? I just want to eat and I’m not sure what to eat right now. Maybe fruit? Rice? Not that I don’t need to lose a few pounds lol. 😂
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Katyblu, I’d say eat what sounds good and doesn’t upset your stomach.
Trying to type on my phone. Keep having yo backspace. Grrrr!
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We’ll it looks like I missed a bunch of comments. Will come back tomorrow when I can use my computer.
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Katyblu - yes, I had trouble with taste and eating on Piqray. It was just discontinued for me because I got Covid and was prescribed steroids for that. The steroids sent my sugars so high I was sent to ICU for 4 days in diabetic ketoacidosis (DKA). Prior to covid I had been tolerating Piqray fairly well but had to be put on metformin and Jardiance to keep my sugars under control. Between those three I had almost zero appetite. I lost about 80 pounds in the time frame between May and December. I agree with Sunshine99, eat what sounds and tastes good to you. I could not eat large volumes so I ended up doing small frequent snacks and that seemed to help. Some days I felt like I lived on Greek yogurt. I'm so happy the side effects are mild for you and you are tolerating it well. I hope you get a long run of stable on it.
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Thanks emac! I’m sorry you got COVID and had to discontinue the treatment. I’m currently on a short hiatus from treatment due to having surgery last week. I went to see ortho onc last Monday and was having surgery by Thursday. Now I’m just trying to weather the side effects of surgery. Hopefully I start healing pretty well!
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I just started week 2 of Truqap. Fingers crossed for minimal SEs.
Saturday and Sunday were the first days I felt like I actually ate something and didn't feel like I was going to die. (Post esophageal radiation recovery.)
I'm supposed to test and report my fasting blood glucose next Monday. Just for my own interest, I tested it last Monday and today. The results were 41 and 85. I did eat some crackers last night at around 11 pm, hoping the carbs would help me sleep. I usually don't eat that late.
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Yikes Sunshine99, 41 is getting really low. I am not on Piqray any longer after going into DKA but I still have to monitor my sugars and now I have some hypoglycemia issues.
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emac, I think the low number may have been due to my very restricted intake. Yesterday, it was 85. I'm checking it once a week and tracking it on my bloodwork Excel spreadsheet. I'm supposed to check it next Monday, which will be two weeks after starting Truqap and send the results to my MO's office. The weekly checks are more for my entertainment.
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hello. My mom is going to take Picray soon. I was diagnosed with breast cancer about a year ago and received Paclitaxel for about half a year, and the tumor index went down a lot, but recently it has risen sharply, so after consulting with my MO, I changed to Piqray starting today. Until this summer and fall, her condition was very good, as if she had completely recovered, but it worsened rapidly in the winter. Currently, her weight is around 38 kg and she is suffering from frequent diarrhea, vomiting, and abdominal pain. If she experiences side effects after taking Piqray, it will be very difficult for the patient. I try to prepare in advance before taking it. Is there a way to prepare in advance for Picray side effects? We would like to gain wisdom from patients and guardians who have experienced it in advance.
I hope you are always healthy.0 -
@eames_yim, welcome! We are sorry to hear about your mom's diagnosis, but glad you found us. A discussion like this is an excellent way to prepare for a treatment but, until you hear from other members, take a look at the following article from our main site:
What to expect when taking Piqray.
Hope this helps. Looking forward to hearing more from you!
The Mods
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Hi, I just got of the phone with my MO's nurse. I just started alpelisib about 3 weeks ago, and now I guess I have an acute kidney injury as an adverse event. My blood sugars were high as well, on 2000 mg metformin a day. My MO wants me to stop the alpelisib ASAP and probably switch to Trucap/capivasertib. Anyone have a similar experience?
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Hello kkcita,
I took Piqray in March this year and already after 1 week serious side effects appeared with very strong skin reaction and fever.
We stopped it and then started again later with an antihistamine but barely 1 hour after the first dose the side effects returned with a vengeance and the lab showed that my kidneys were not working well. We stopped everything while we recovered and then moved on to Truqap (Capivasertib). I started the 21st week and tolerated it much better with just a small skin reaction and some diarrhea managed with Immodium. My markers have dropped significantly since then and my last PET scan does not show any resumption of activity of my bone and liver metastases.
I hope this can encourage you for the future if you are going to change your treatment... there are still solutions. 😘1 -
@soldanella thank you!! this is really helpful for me!!!
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