Piqray

[Zennia]

Is anyone here on piqray? If so, is it working and do you have any bad side effects?

[SoCalLady]

Hi Zenna. I have talked about my experience on Piqray at least three times on this forum, but when I try to look it up I can't find them. So, I'll try to be short and not redundant. I started on 150 mg (1/2 the recommended dose). Within 11 days I had terrible hives all over my body; itched so bad I could not sleep. Onc took me off until I healed. Tried again and within two hours got hives again.

Finally, my Onc decided to do his homework, called Novaris (the manufacture) and found out in clinical trials they always prescribe an allergy pill while taking this drug. He then gave me a cocktail of Claritin in the morning, then Pepcid 20mg once a day for hives, and Prednisone 10mg once a day. This was to build up my body against allergies. After two weeks, he put me back on 150 mg of Piqray along with the above cocktail every day. For added assurance, I also took a Benadril with the Piqray with dinner. It can make you sleepy. It worked, no hives. My markers went down about 500 points, but they are still over 1000. After a month on being on the lower dose, he just put me on 300mg, the recommended dose. He wants me to drop the Prednisone down to 5mg. So far so good.

Other side effects include very soft stools and my sugar went up to 320. He is going to talk to my Internist about putting me on Metformin because of the high blood sugar. He does not want to take me off this drug, just wants to control the side effects. The stats are that 30% will get hives and up to 70% will get diabetics. There are other people on this forum that take this drug, but I haven't seen any posts in awhile. Metformin is usually given to diabetics, but I've recently read it can do more including cancer blocking. If anyone has more info on Metformin, I would really appreciate your posting about it, including side effects.

My recommendation, as a minimum precaution, do not take this drug without first taking an allergy pill.

[Zennia in reply to SoCalLady]

Thanks so much for your reply. I have only been on it (300mg) for a week. I am taking an allergy pill and Claritin. My big concern is the high blood sugar. I pray this works as I am close to having no other option besides chemo infusion.

[SoCalLady in reply to Zennia]

Your Onc evidently had more knowledge about preventing the rash than mine in the beginning. Hope you don't get the rash. Let me know how your blood sugar does and I'll do the same. Have you seen the posts here about Melatonin and how it's suppose to work against glucose? I will be asking my Internist about that, as she has a lot of diabetic patients. Wonder what your onc would say about Melatonin and Metformin?

[Zennia in reply to SoCalLady]

I see her next Friday and will ask . Has your onc said anything about diet? My hasn't.

[SoCalLady]

Hi again Zennia, I see where you were on Xeloda. Did your onc take you off Xeloda and put you on Piqray instead? I am also on Faslodex with Piqray. Assume you are too?

[Zennia in reply to SoCalLady]

I started with Ibrance which didn't help, then went to Xeloda. That didn't help so now I am on piqray. I have the mutation that piqray is supposed to be for. Yes, I get the Faslodex shots. Oh I forgot, I was on afinitor before piqray.

[SoCalLady in reply to Zennia]

Xeloda & Afinitor are both chemo, right? I understand Piqray is a direct target for the mutation. Do you also take Letrozole, because my Onc has not taken me off that. I have mets to the bones and a lot of them. So far no direct evidence of anything else. What about you?

[Zennia in reply to SoCalLady]

I am not on Letrozole. What does it do? I have a lot of Mets to the bones also. No where else yet!

[SoCalLady in reply to Zennia]

The brand name is Femara for postmenopausal patients. It's aromatic inhibitor works to block estrogen in a different way. Think I'll ask Onc next time about going off it; been on it for years since my initial breast cancer. Not sure the "benefits" are outweighing the possible side effects anymore.

[Hidden in reply to SoCalLady]

Just to add to the response, in case others look this up, the "postmenopausal" treatments become options if you are pre-menopausal but have injections to suppress hormones (I forget the the names) or ovaries removed. I did both, sequentially...

[Ps103-BTLOMS]

Hi there-

I started on PIQRAY /Faslodex near the end of 2019. I had intense itching on my buttock from the faslodex. In January I had an intense asthmatic reaction during the injections of faslodex (coughing & pain at sternum). My inhaler relieved the symptoms. The next month I used my inhaler for several days beforehand and took benadryl prior to the shots. No, asthma reaction.

My TM went down considerably in January but one bounced back up this month. I kinda fell off my no sugar wagon with Girl Scout cookies. Strange how I get sugar cravings right before my blood tests.

I started having vision issues in January and have been taking herbs to help improve things. Supposedly normal age related changes but not sure if bilberry, gingko & lysine coyld be counteracting treatment efficacy.

The strange thing is that my ANC scores have been climbing... first 4.4 and this month 6.9. I haven't talked about this trend with my oncologist but will next month.

I am worried PIQRAY may not be working so well but this is early in treatment.

[equavel]

I have been on Ibrance for 2 .5 years

My on. Is switching me to fastodex and piqray and I am taking Aromasin

I am off to Cuba today for a holiday and the change in medication will take place upon my return but I’m seriously debating whether I will take it I am more interested in living then being kept alive and after reading and looking at the side effects I’m wondering if it is worth it

[Zennia in reply to equavel]

I am on my 2nd month of Piqray and so far haven't had any bad side effects. I think you should give it a try. Everyone is different. Have a good holiday.

[equavel in reply to Zennia]

Thank you for your reply

[Hidden]

Enjoy your holiday. Cuba is wonderful. Don’t know about your meds sorry but hope you get some feedback from here.

Best wishes