Piquay

[Iwouldlike2knowmore]

Are there women out there that take Piquay and how they feel about it. Helena

[klhowe]

Hi Helena,

I just finished 3 months on Piqray. Do you have the mutation? What options is your doctor giving you?

I was very hopeful that Piqray would work for me dispite the side effects and the low progression free period, I think it is only 11 months.

In the 3 months my liver tumors went from 2 to 6 tumors and the original 2 doubled in size. I never had that kind of progression on Ibrance.

I had the mouth sores, diabetic sugar levels and extreme diarrhea. I lost 20 lbs. I could not leave the house for 3 months because of the diarrhea.

If I could do it again I would compare my options, the side effects and the proven progression free period and choose the more proven drug.

I am on to Xelod. The women on the Piqray facebook group who have moved on to Xeloda say it is a walk in the park compared to Piqray.

Best of luck on your decision.

Karina

[Lnlc]

Hello Helana, I was excited about having the mutation and the opportunity with Piquay for targeted therapy. I developed a rash early on and the onc took me off of it for about 10 days. Started again (which is protocol as the rash is very common) but within an hour of taking the pill I had a severe allergic reaction, which required steroids and nerve blocking pills to abate. I flunked Piquay but I wish success for you! Ellen

[Iwouldlike2knowmore in reply to Lnlc]

I don't think I want to try it. Thanks Helena

[SoCalLady in reply to Lnlc]

I do not understand why the oncs are not knowledgeable enough to put you on allergy pills before and during Piqray because of the rash/hives. I am currently on Piqray and had to suffer thru 2 sets of hives before my onc finally got around to doing his research and found out in the clinical trials for Piqray, allergy pills were also used to avoid hives.

[Iwouldlike2knowmore in reply to SoCalLady]

What other side affects do you have. Helena

[SoCalLady in reply to Iwouldlike2knowmore]

It put me into immediate diabetes. Blood sugar went up to 300. Now I fight to keep my blood sugar between 130 and 180. To do this, I can't even look at a carb/sugar. No other problems. So, if you're already diabetic, you already are treating this problem. My markers were over 1500 before Piqray. Been on it 8 months. Got markers down to 450; however last month they went up 100 to 650. So. I don't know what's going on. CT scan did not show any new evidence of progression. (I know most people don't have these high markers. I didn't either when I started out in 2016.)

[Lnlc in reply to SoCalLady]

Hi- actually my oncologist (who is wonderful) had me start allergy medicine with the first dose and all subsequent doses of of Piqray. Unfortunately it wasn’t enough to prevent he rash.

[SoCalLady in reply to Lnlc]

I take two different allergy pills, plus pepcid, and prednisone with my Piqray. However, I've weaned myself off the prednisone in the last month.

[Buffwright in reply to SoCalLady]

I’m in SoCal too. I start Piqray tomorrow. I bought some Zyrtec and took some today because I thought I was getting a cold. Do you take it daily?

[SoCalLady in reply to Buffwright]

I take Claritin and Pepcid in the morning and Benedryl at night (generic brands) and seems to work just fine to avoid hives. I think Zyrtec is what they used in the trials though. My biggest problem is it raised my blood sugar to diabetic levels and now I have to watch everything I eat and monitor my blood sugar, plus the diabetic meds give me diarrhea.

[CookieB7]

I was on ibrance for about a year and a half when it stopped working. My oncologist said he wanted me to try piqray. I did very well on ibrance with almost no side effects. The piqray has been a little harder to deal with but not horrible. I have been on it since july. I did get a slight rash on my arm but was told to take some benedryl. That worked and i havent had any other problems with rashes. I had a few mouth sores but rinsed with warm salt water and those went away and so far no more. My blood sugar has remained normal and i havent lost much weight. I havent had problems with diarrhea either. Probably the worst side effects for me so far have been taste changes and loss of appetite. I wont know how it is working yet because im not due for a scan until november. Im curious but a little scared at the same time. Of course im hoping for the best. Arent we all.

[SoCalLady in reply to CookieB7]

Cookie, so refreshing to hear you had so little side effects. I've had the taste changes also.