piqray

[Buffwright]

I was on Piqray and Fulvestrant for two years with MBC with the Piq mutation. A large percentage of us have it, but not all doctors test. I took it after Ibrance and everolimus/exemestane quit working. I wonder why Piqray isn’t included on the drop down list of treatments on this site. I’ve now moved on to Xeloda.

[Lillysue]

I am in the UK where Piqray was only approved by NICE ( health/drug regulator) lasy year. My Oncologist has just tested me for the mutation. If I have it then this will be my next treatment after Palbociclib and Letrazole.Please can I ask you how you manged taking Piqray and if you had any side effects ?

[POPS60 in reply to Lillysue]

Hi, I am also in the UK and started last month. I have had a bumpy start as a rash appeared after day 5 and has to come off it until the rash went. Started again last Wednesday on a lower dose of 200mg and I am OK so far👍 although i have seen an oncologist about rash and she has advised various creams just on case .This drug does seem to give side affects of which the main ones are rash and high blood sugars. Regular antihistamine is imperative, I take them morning and night and alot of people do.

There is a Face book page for Piqray users which you may find useful too, I certainly have.

[Lillysue in reply to POPS60]

Thank you for your reply. Once I know if I test positive for the Gene, I will join a Facebook group, is it a Uk or USA group please ? At my hospital there are only 2 people on Piqray so far.

Hope you continue to be ok on the drug and you don't get any further rash.

[POPS60 in reply to Lillysue]

Hi, it is a world wide group . I have connected on WhatsApp with one other lady in the UK as we have been supporting each other. Sadly she has just had to come off it though due to side affects.

It's scary isn't it, as I am the first one to go on it in our area authority, so I have found the Facebook page really useful and I have given back to my clinic too.

Yes come back to me if you do plan to go on it, as i can share some tips that I have found really useful. Xx

[Lillysue in reply to POPS60]

It is a bit scary especially when I have heard (haven't googled) fb groups about some of the side effects. Also I was hoping Palbo & Letrazole was going to work a bit longer. I have had 16 cycles until small node (new met) popped up in chest wall. Thank you so much. I will definitely come back and chat if I am moved onto it.

[Buffwright in reply to Lillysue]

Piqray (plus Fulvestrant) wasn’t awful, though my two side effects weren’t fun! Fatigue is a given…. After a little over a year, I started itching…not a rash, but a deep itch on my torso and scalp. The only thing that helped me (antihistamines and creams didn’t) was UV light treatments…like a tanning light without the tan! After about 20 months, my blood sugars went up….and down. It was hard for me to regulate because I’m not very diligent about eating, but not impossible. After a bit they put me on Actos to help regulate. During my two years, I served as President of my Rotary Club, and made several trips, including one to Victoria Falls. Zimbabwe and Capetown, SA. Had one diarrhea bout (always carry extra undies in a zip lock bag) but otherwise did well. My hair thinned (my pubic hair went away altogether). So, I was pretty lucky, and it gave me 2 more years and 2 grandchildren and a wedding!

I’m now on 2000 mg Xeloda, and once we got the dose right, I’m barely experiencing side effects. (The first 10 days at 3000 were awful). My hair is even returning!

Good luck. Hope for the best!

[Lillysue in reply to Buffwright]

Thank you. I have tolerated Ibrance really well, I am still on 200mg after 18mths. Just wish to be able to continue my life as it is at the moment.

[Adele_Julia]

I’ve been on Piqray and Fulvestrant for 14 months and have a scan tomorrow. Next treatment would be for me Xeloda as well. My onc says I qualify for Enhertu but I really want to stay away from IV chemo. I have only one functioning lung, the other is trapped. Besides once on Enjwrtu you’re on it until …. The side effects from that iv chemo is terrifying to me

[Laskia in reply to Adele_Julia]

I'm just going onto Piqray after Ibrance / Letrazole failed me. I am also eligible for Enhertu once it is licenced in the UK as I'm HER2 low. Not sure how I feel about that either. This is quite a journey this metastatic one.

[HelenWi]

I just started Piqray a week and a half ago. No side effects so far… their warnings really scared me. I don’t have the actual PIC3CA mutation, but a variant of it; my oncologist wants to try it anyway after consulting with the Piqray lab. I started on Ibrance but had to stop after 3 months because it caused pneumonitis; I am so disappointed to lose all the potential time on Ibrance. If PIQRAY doesn’t work he might put me on IV for a bit since a considerable time has gone by since the diagnosis.

[Pachira]

I had a second opinion when the Onc was going to put me on Ibrance. I loved the doctor I was referred to and she felt that Verzenio and Faslodex would work for me. She also said my next line should be Piqray. This doctor has now retired from a large Seattle hospital. I was grateful for all the information she gave me in that one visit. My old Onc asked me what my next line would be abd when I said Piqray he had md tested. Chris

[Deekay825]

I’ve been on PiQray since November and it has been horrible. My blood sugar jumped up to 470 the highest it’s ever been. I’m not diabetic but now have to be on insulin and metformin to deal with the high blood sugars. I’ve been on and off since Thanksgiving. I’ve actually had two full weeks on it and thinking about changing already. Since all this started I have lost 42lbs because I can eat, I get nauseous from the smell of food and nothing stays in. I know I need it but ready to give it up.

[ClarenceO]

I am starting Piqray after 2 1/2 good years on Ibrance and Exemestane despite some pneumonitis. I have the PIK3CA mutation. I was hoping to sub the newly approved pill Orserdu rather than get the faslodex shots based on the pain of those shots that some here have mentioned but I have to first be tested for the ESR1 mutation required for Orserdu.

For those on Piqray in the US, did you receive any drug financial assistance? My Medicare out of pocket costs would be $42K without assistance. Yikes.

Thanks POPS60 for the Piqray FB page info.

[Buffwright in reply to ClarenceO]

unless you’re very sensitive, I wouldn’t let the reported pain from Faslodex stop you. It’s momentary and helps prolong life!

[Buffwright]

my bill for piqray was 1030 a month after I met my max out of pocket. (I’m on Medicare and have a good supplement. ) I wasn’t eligible for assistance….I think you have to make less than $45000.

[ClarenceO in reply to Buffwright]

Thank you that is very helpful to hear! You’re right on the faslodex. I carry bio freeze w me for every needle and it helps. Short lived moments of pain are worth the gain.