Piqray

[bankusboysmom]

Well I made it 6 years on Ibrance+Fulvestrant. I've just learned I have the Piqray mutation and will be starting on it as soon as I get approval from insurance. For anyone else with experience with Piqray, I would appreciate any info you can share. The only real side effect with Ibrance was fatigue and it would come and go in waves. I'm nervous about what I'm in for with Piqray. Did anyone lose their hair? I know that sounds shallow, but I haven't had to deal with that yet and, if I'm going to lose it, I want to prepare myself.

Thanks everyone for your knowledge, support, willingness to share. So sorry we're all on this journey, but so thankful for all of you!!

Melinda

[Djd60]

Hi, I also have the Piqray mutation gene, I didn’t loose my hair, it just thinking no matter what medication they put me on , so I take Biotin to help with the loss daily , my Oncologist took me off the Ibrance back in 2020, took for about 4 months, I didn’t do well on it but that doesn’t mean you won’t, I lost over 30 lbs and was sick daily, couldn’t eat much, the smell of certain foods turned my stomach, it reminded me of when I was pregnant years ago and the smell of foods turned my stomach, like eggs etc. It made me so weak I ended up in the Hospital, went from a size 12 to a size 3, my Oncologist finally took me off the Piqray and back on the Ibrance, Fulvestrant and Xgeva shots, which now I have gained all my weight back, can eat anything and don’t feel nauseous but once in a great while, good luck to you, I pray you can take Piqray and not have any issues like I did !

[Djd60 in reply to Djd60]

Sorry, not thinking, I mean thinning lol, to early and haven’t had my morning coffee yet !

[bankusboysmom in reply to Djd60]

Thanks so much for your reply. It doesn't sound fun. I had understood that once you go off something, you don't go back on it, so I'm curious that you are going back on Ibance. I must say, I could stand to lose the weight, but the Piqray "method" doesn't sound fun.I hope you will do well with Ibrance. I really had no problems with it.

[macspow in reply to Djd60]

Hi djd60. You mentioned 'back on the Ibrance, Fulvestrant and Xgeva shots,'. I did well on that treatment for over 6 mos. before it stopped working. I had no side effects from it. I didn't know you could begin a treatment a second time - after a certain period of course. Thanks, Jim

[Amm1]

Hi Melinda,

I am coming up to 7 years since de novo diagnosis. I am a couple of days short of 4 weeks on piqray/faslodex so far It’s ok. I broke out in a rash after two weeks (wasn’t sore or itchy) it disappeared after a couple of days. My blood sugars are normal so far and hair is much the same as on Ibrance. I was given an antihistamine and an antacid (pantoprazole) to take with them. Main side effects so far are lack of appetite, I was given tables for nausea and vomiting but haven’t needed them, the odd wave of nausea about 2-3 hours after taking them but it passes quickly, can’t stand the taste of coffee which I loved before 🤷‍♀️ the fatigue is there but not as bad as on Ibrance. Hopefully things won’t change 🤞🏼. I really hope you can take it without any problems - its certainly worth trying, apparently it can be quite successful 🙏

Anne

[bankusboysmom in reply to Amm1]

Thanks, Anne, for your reply. I've also been told to start allergy meds asap and to take them morning and night. Didn't know if I should continue antacid, but now that I know you take them, I will continue. I can certainly stand to lose some weight, so maybe the loss of appetite will help..who knows? Thanks for responding and your good info. I did well for 6 years on Ibrance + faslodex, so I'm hoping I'll do just as well on Piqray + faslodex. Take care.

[Amm1 in reply to bankusboysmom]

Hi Melinda

I just wanted to update you- I had my hospital appointment yesterday and my oncologist is very happy with my bloods etc. Everything was good! I know a number of people have had problems with piqray but so fat so good. That’s the first four weeks over- I still have to check my blood sugars every morning but no issues so far. I actually feel much better than I did in Ibrance/letrozole. Apart from the lack of appetite (which means I’m eating healthier because I have to think about getting protein and vegetables into the meals) Hopefully it continues. Wishing you every good luck with your new treatment

Anne

[bankusboysmom in reply to Amm1]

Hi Anne, so happy things are looking good for you!! I start tomorrow morning and hoping for good results. Didn't think about it, but you're right, the lack of appetite will force me to eat healthier

Melinda

[Amm1 in reply to bankusboysmom]

Good luck with it. 🙏🏻

[bankusboysmom in reply to Amm1]

Anne, What time of day do you take Piqray? I've finished one week and I'm ready to give up. I haven't left the house, I have no energy to do anything, this is not how I want to live. Do you know anything about reducing the dosage? Sorry for dumping on you but I am miserable.

Melinda

[Amm1 in reply to bankusboysmom]

Hi Melinda,

Sorry to hear you are feeling so miserable. I think any change in treatment can take a few weeks for your body to adjust to (not to mention the stress of progression on the previous treatment)I was very tired the first few weeks but I have had a fairly bad sinus issue and was blaming it maybe it was the Piqray! It’s much better now (I’m coming up to 6 weeks on it) Are your sugars ok? I was given an Accu check machine to check mine every morning- if yours haven’t been checked ask for a fasting blood glucose test, diabetes is a very common side effect. I’d definitely phone your cancer centre and discuss the fatigue. I take mine after breakfast but am going to ask about changing to after dinner instead (I can get a dip in energy a couple of hours after taking them) I’m on 300 mg a day but I know it can be dropped to 250 mg. I really hope things improve for you soon. 🤞🏼

Take care

Anne

[bankusboysmom in reply to Amm1]

Hi Anne, I do a fasting blood sugar check first thing every morning and it’s been all over the place. I take Metformin but I don’t think it’s kicked in yet. I’m hoping my onc will lower the dose. On Inrance I went from 125 to 100 the first month and was on that for 6+years. I’ve just got to get this figured out so I can get back to life. So happy you’re doing well!

[Lokilinda]

Hi Melinda!

Welcome to the pik mutation club.

I just started the piqray and three doses in my blood sugar went through the roof. It hit almost 600 and I ended up in the emergency room ( didn't have to get admitted) . And after all the worry they'd instilled in me about the blood sugar as the main scary side effect it wasn't that bad. I had to get a crash course on checking my sugars and administering insulin to bring it back into line.

I was really worried they'd pull me off it completely but we are going to manage my blood sugar like a diabetic with insulin pens and I don't feel too shabby.

I had my dose lowered from the 300mg in two pills to 250mg that is a 200mg pill and a 50mg pill.

So now we try again and see if any other side effects like fatigue and the low wbc pop up but I'm feeling pretty good about the adjustment. I think my family thinks I'm crazy I'm not more upset about becoming a faux diabetic, but for me it seems like a small price to pay to see if this drug thats been so effective works for me.

Good luck and I hope you get none of the side effects.

Oh someone told me if you didn't lose your hair on ibrance you probably won't on piqray. Just thinning while your body adjusts. That's what I got on ibrance. Thinning only I could notice and about six months in it started to grow back totally.

[bankusboysmom in reply to Lokilinda]

Thanks for info! I started taking allergy meds asap to, hopefully, avoid the rash; and I've started on Metformin to help with blood sugar. I will be starting tomorrow as I now am going through a specialized pharmacy. I've also been given a grant to help with cost and I am very happy about that. I started on Ibance the week it became available and did well for 6 years. I'm hoping to do well on Piqray.

Melinda

[scarlson24]

How are you doing with piqray?

[macspow]

All the best to you Melinda. Please let us know how things go. Piqray would be my next course of action as I have the same mutation. I'm trying Taxol first however (due to Piqray possible clashing w/ other med. issues). Jim