Piqray

[Mcangel11]

Hi everyone,

Going to start piqray soon for Pik3ca mutation and wondered of anyone is on it?

Rox

[Ardie1970]

I am but not sure if I will be for long. I have had to start and stop twice since starting. Once for an infection, and once for a rash that wouldn’t clear up and I was having surgery. Latest scan showed progression in the liver but I had been off for a month and had only restarted 4 days prior. Having PET tomorrow and blood work again in a week and a half. Side effects since restarting have been non existent so I am hoping it is working now that I am on it regularly.

[Mcangel11 in reply to Ardie1970]

Thank you!! Did you get high sugars?

[Ardie1970 in reply to Mcangel11]

No but like I said I was very inconsistent during first three cycles.

[Mcangel11 in reply to Ardie1970]

Oh by the way good luck on your pet scan

[Adele_Julia in reply to Ardie1970]

Best on your Petscan !!

[mariootsi in reply to Ardie1970]

Good luck with your pet scan! I pray for good results.

[Mcangel11]

I am deathly afraid of these side effects. Most people get diabetes and liver enzymes go up...severe diarrhea..I don't want the chemo to kill me before the cancer

[Ardie1970 in reply to Mcangel11]

Piqray is harder than Ibrance but manageable. Some people show excellent results on it so I would try and focus on that. I got a relief band which really helps with the nausea. Also, if I eat ate home, I have less problems with my stomach.

[Georgiamjb]

Hi! I just started Pikray 3 weeks ago and so far so good. I don't have high blood suger and a mild rash has resolved. Besides that I feel some fatigue, but felt this way on Ibrantz too. I hope this encourages you!

[YeshimT]

I was on piqray for about 6 months with Lynparza and Fulvestrant. Side effects were high blood sugar, severe diarrhea, nausea, swollen right foot. Especially, swollen feet gave me hard time. Stopped using it for a while but due to progress on my bones, I had to start using it again 3 weeks ago. So far my feet are ok but diarrhea, blood sugar problems, and nausea still continuing.

[Justme153]

Just wanted to throw out there. Not to forget that everyone reacts differently to treatments. Don't borrow trouble before it happens !! My way to handle side effect info is take the flyers if I start feeling a certain way I will look to see if it is listed as a side effect. That way I feel my mind doesn't make me imagine things . If your doctor feels this is the next best treatment option ( and you trust your doctor) then you should probably give it a chance. You may be that person who has no side effects. That being said I am also a person who believes strongly in quality of life. So if your quality of life is not good with any treatment I would definitely discuss with my doctor that a change has to happen. Just my opinion!!

[Cureforever]

Hi Rox,I do not want to upset you but I tried three different doses and it did not work due to severe allergies. The first time I developed rash and fever after two weeks, the second and third I was running a fever the first day. On the other hand, my cousin was on it for many months with no side effects. As people here are saying everyone is different. I am on Xeloda now.

Good luck

Marina

[Adele_Julia]

Hi there . I started Piqray on Jan 1. I take the capsules and put them in gel caps to prevent mouth sores or nausea. I am also on Metformin which diabetics take (I’m not diabetic) to counteract the tendency for Pik to elevate glucose. Also starting the Keto diet which has been proven to work exceptionally well with Piqray. Best of luck !

[mariootsi]

Let us know how you do on Piqray. It is in my future too!

[Mcangel11]

I went to the doctor today and I have bought a glucometer antihistamine and being a nurse of 40 years I went in armed...my doctor greets me and says how are you?? I said a mess I saw my labs and positive for mutation and if that happens I would have to go on piqray!! She said we are no where near that drug you have so many options...I wanted to puke I was ready and I felt I just got some quality of life for a few months...I am elated but know down the road it will be something but I am thankful for today!! Amen

[Poet21]

I was on Piqray for 2 weeks. I developed a severe rash and fever. I could not get out of bed. I never experienced a side effect like that . My doctor took me off it immediately . First time I ever had a drug I could not tolerate. I took all the precautions necessary and was on an antihistamine to counter any side effects and I followed the keto diet. I lost five pounds and then the rash. When I stopped the drug, all symptoms disappeared.

[Ardie1970]

I would suggest joining the Piqray group on Facebook. Lots of ladies there who are doing quite well on this drug…

facebook.com/groups/1699418...

[Mcangel11]

Sandra, At my last visit my doctor said I am going to test you for the variant.If positive their is a drug that targets it called piquray which comes with a lot of side effects...if your negative that's one but if positive we will have a long discussion on it..I saw In my chart i was positive so I did research on it with her making me think that was next...

Thank you for you reply

Rox

[Photo-Bug]

Yes, the Facebook group is wonderful. Only people in that group can see the responses. It took me 2 tries to be admitted.

[Gailcav]

I have been on Piqray for about a year and a half. It did throw me into a diabetic state which I take medication for. It does also causes severe diarrhea, but I have managed it with a anti-diarrhea medicine. Also, I have lost my appetite and eat very little. I lost 80 pounds in one year, which is good because I was obese. I am now 140 pounds and I’m trying to maintain that weight and not lose any more. Recently my kidney numbers have been bad, and I am going to have a kidney biopsy to determine if it’s the Piqray or something else. It has a lot of side effects, but it’s manageable.