Piqray or IV chemo

[Jhshl512]

I would really like to try Piqray instead of IV chemo. Any positive thoughts or experience would help. Thank you Trying to keep up the good fight.

Lori 🙏🏻

[elle3054]

Hi I did Piqray and it reduced tumors but very severe diarhea and terrible metalic taste I had to switch to Ibrance

[mountainwoman1]

I started Piqray in November 2021. I was afraid of this drug after reading so many negative experiences. Yes, there are side effects, but mine have been manageable. I did have to start treatment for high glucose levels. But other than that a little more fatigue, I am doing well. At least I think I am ! I have my first scans since starting this drug tomorrow morning.

Have you been tested for the genetic marker that this drug targets?

Please ask to join the Piqray group on Facebook. There are many people in that group who have had great results with this drug. They can help with any questions you may have.

[Jhshl512 in reply to mountainwoman1]

Thank you so much for your positive reply! Yes I have had genetic testing done. I do have the piq3 mutation. I haven’t started piqray yet, but it is an option. I have heard horrible stories about and yours is a breath of fresh air. I am going to Dana-Farber for a second opinion and I hope they will have more options or a clinical trial. I am no longer on Facebook but if I’m put on piqray I will certainly look into re-joining for that reason alone. Thank you once again. HUGS, for your positive scans!!!! If you feel like sharing your results, I would be interested in your progress.

[Rbeth]

I am on Piqray. Diarrhea yes, cancer numbers down. I hope I can stay on it. I feel great.

[Jhshl512]

Thank you for your response. So happy you feel great!

[Mcangel11]

Hi, I tested positive also but had to be taken off ibrance from a severe side effect.I have just been blessed with clean cat scans no evidence of disease...I thought my only option was piquray and read the side effects and freaked out!! When I spoke to oncologist she said we are no where near trying that yet..I am only on immunotherapy now but like I said my Mets are gone..I have way too much experience in this having 3 major different cancers since age 37 so I am guessing you have Mets if the want you to start iv chemo..I did join piquray on Facebook and their are so many side effects but they usually work themselves out after a couple of months with antidiaarhea nausea and monitoring your glucose..Having been on IV chemo I definately would try Piqray it attacks our mutant gene we have..I see a Dana Farber doctor and you won't regret seeing them..

Good luck and please if your comfortable letting me know what you decide ..I have been a nurse of 40 years so I really know how to advocate for myself..Piquray is euppose to be a great drug if you can get the side effects under control ..IV chemo has side effects also..I feel like we have to pick our poison...please let me know I am praying for you

Rox

[Hidden in reply to Mcangel11]

Could you share what immunotherapy you are on? I’ve read it can be great for TNBC but not necessarily lobular or Ductal. Thanks! Mandy

[Jhshl512 in reply to Mcangel11]

Thank you Rox. I’ve been fighting this disease since 2004. 2013 I had a tumor removed from my spine and then became stage 4. 2020, it’s now in my pelvis. I tried Ibrance. It stopped working after 6 months. My pelvis tumor had grown. I then went to Capecitabine. That stopped working as well. I have a tumor on my back near my scapula and a lymph node in my armpit is enlarged. We talked about a trial which entails immunotherapy or Piqray. My appointment with Dana Farber is April 4th. I’m hoping for the best. Thank you for sharing your experience with me! Hoping you stay healthy🙏🏻

Lori

[mariootsi in reply to Jhshl512]

Lori, best of luck with your April 4th appointment! Let us know the outcome.

[Mcangel11 in reply to Jhshl512]

I will be praying for you!

[mariootsi]

Lori, Piqray is in my future too. I have the mutation.

[Jhshl512]

Here’s hoping it works for you in the future. They make it sound like this is my only option before going to IV chemo. UGH!!

[Thrifty51]

I also started Piqray in Nov. 2021 after 22 months on Kisqali then a year on Cape. Two weeks ago I had my first Pet/Ct scan since starting Piqray which showed no active cancer. My markers have gone down from 190 to the mid 60s. That's the good news!!!

Now the not so good: I have had diarrhea for almost 2 months. I sort of keep it under control with medicine and diet. I have not experienced any glucose problems but do take a reading about twice a week. I do have fatigue just as I did with the other meds.

I wish you the best whatever you decide.

Audrey

[Jhshl512 in reply to Thrifty51]

Thank you! That’s one thing I don’t get. My tumor markers have always been in the 20’s. But yet, my cancer is actively growing.

[Thrifty51 in reply to Jhshl512]

I have read many times that the marker readings are not accurate for all patients so a lot of doctors don't even do the readings. Mine have always been spot on when there is an increase or decrease.

[kokopelli2017 in reply to Jhshl512]

hi there. i missed this post a couple weeks back and just came across it. just wanted to mention that my tumor markers have always been 'normal' despite having primary BC in 2013 and diagnosed with mbc in 2017. and despite having new spread along the way, my tumor markers always remained normal. strange but true.....so you are not alone in that. my onc does not pay much attention to tumor markers, saying they are not reliable. although for some they do seem to correlate. but for me (and you), they are pretty useless. everyone is so different.

carole xo

[Jhshl512 in reply to kokopelli2017]

Yes, I see that now. Thank you

[Remyan]

As to my own experience on Piqray, after 2 weeks the mass in my axilla disappeared and lung mets started to shrink. Later on I lost my sense of taste and developed cachexia, ulcerative colitis and proctitis with abcesses. I was taken off Piqray and am just on fulvestrant for the mbc. The UC was finally controlled with Entyvio infusions which saved my life after failure with steroids. I just came home from one today and feel good. I was in hospital 3 times last year and down to 69 pounds. Now I am up to 95 pounds and the most wonderful part is that after recent PET scan I am NED! Everyone's body is different so it is up to you to decide what to do.

[Jhshl512]

Oh how awful! So glad to hear you are doing better.

[FaunShea]

Hi , I have taken Pacletaxel 3 times over about a 5 year period and my Cancer came back so am now on Piqray as I have the mutation. I much prefer Piqray so far . I have been on Piqray for 3 months now and my tumors are shrinking . I hope that helps, Best to you 💗

[Jhshl512 in reply to FaunShea]

Thank you for your reply. I am currently on a clinical trial at Dana Farber(faslodex pills). So far so good. I’m told if this doesn’t work I’ll be taking Piqray. Again, thanks for your positive reply🙏🏻

[FaunShea in reply to Jhshl512]

You're welcome . Anyone on Piqray , I highly reccomend the Zyrtec pill 1 hour before taking the Piqray (with food) that has helped me not to have the rash problem .

Here is a study I found interesting . More good news for us all.

utsouthwestern.edu/newsroom...