PIQRAY

[Gibbsbet]

PIQRAY. Anyone on this new chemo? Markers increasing and waiting for Piqray approval.

[mph2]

I will be starting Piqray this week. My insurance has approved and I am waiting for the delivery from the pharmacy. I took Ibrance for one cycle, but my WBC dropped too much so they switched me to Verzenio. The horrible side effects from that might have been forgiven if it had worked, but my CT scan last week showed progression. The blood test my onc ordered showed that I have the PIK3CA mutation so we have high hopes that Piqray will work with the Faslodex shots I’ve been getting, otherwise it’s back to IV chemo I hope your approval comes through soon!!

- Meg

[Gibbsbet in reply to mph2]

Meg. I got my approval today and will begin next Tues. We are similar in our treatment. I was on Ibrance, Faslodex and Xegeva last yeat but mets showed in my liver in April and I was put on Xeloda , a clinical trial for 3 cycles but CT 2 weeks ago showed progression. I had ghe mutation as well so now will be on Piqray. Praying for you and me that it will work for us.

[mph2 in reply to Gibbsbet]

Yes! Definitely praying that it works for both of us!! I have mets to my liver as well, plus some bones and the lymph nodes in my abdomen. My doctor is hoping that the Piqray gets things under control because I’ve been retaining fluid (Ascites) for a few weeks and if that goes away then it’s a good sign that it’s working. Fingers crossed I don’t have to do the IV chemo to get things under control. Where did you do your clinical trial?

[Gibbsbet in reply to mph2]

I live near Tampa Fl. The trial was at FL Cancer. The trial was w Xeloda and taxetere..but I was. only chosen for the Xeloda. I completed 3 cycles but the liver lesions increased in size and markers kept creeping up.

[mariootsi in reply to mph2]

I pray this treatment works for you!

[mph2 in reply to mariootsi]

Thank you!!

[turbo60 in reply to mph2]

Hello. I was reading this thread about piqray and wondered if you are still on it and it's working? I also have ascites. I started piqray and immediately became super hyperglycemic so they stopped the piqray for several days and now starting at half dose. For the week I was on it at full dose, it did seem to be controlling the ascites.

[mariootsi in reply to mph2]

Praying it works for you!

[Gibbsbet in reply to mariootsi]

Thank you so much.

[Shelby4now in reply to mph2]

My doctor is looking into Piqray for me . Do you know if it is available in Canada. Do you know what the criteria would be for approval. Good luck I hope all goes well for you.

[SoCalLady in reply to mph2]

How are you doing so far on Piqray?

[mph2 in reply to SoCalLady]

Well I just started my 3rd month and so far we’ve had some good signs that it’s working, the ascites went away and my tumor markers started going down for the first time since I was diagnosed in April. And with that I’ve had a few side effects too. I developed a rash about 2 weeks after I started taking it and my doctor was pretty aggressive in treating it with prednisone & Allegra. It went away after about 10 days, but then came back after I took a walk on a sunny day in some hot weather. It went away again, but now I’m being very careful about sun exposure. I’ve also developed some mouth sores, very dry & cracked skin on my fingertips and a little neuropathy in my fingers. Using a Nystatin mouth rinse, Biotin rinse & coconut oil to try and control the mouth sores. Putting a lot of ointment & lotion on my hands along with cotton gloves at night and rubber gloves for doing dishes or cleaning. Also taking vitamin B6 for the neuropathy. I have my first CT Scan next Tuesday, so hopefully it’ll show that the Piqray is working 🙏🏼 Sorry for the slow response... been a little busy with the start of school & fall sports.

[SoCalLady in reply to mph2]

Thank you for detailed response. Much luck w/your CT Scan. I'm being referred by Onc to have an interview to be part of a clinical trial using Alpelisib (Piqray) plus Fulvestrant so your pioneering the drug helps us all who may be on it soon.

[SoCalLady in reply to SoCalLady]

So guess what, my provider group took so long to approve my appointment (sent info to the wrong fax #, etc.) that when I finally did get the referral for the clinical trial, I was told by the head of the trial, that it was closed the day before. My onc acted like no big deal and said you can still go on Piquay, and in fact you don't even have to go to your pharmacy; we can provide it here at a cost of $2,556/mo. I am so steamed and no way if I do go on it, am I going to support their in-house pharmacy. I thought it was interesting, they got me approved for Piquay real quick, but my Fulvestrant approval is still dragging somewhere in the system.

[marklin1700]

I just got a approved for this new drug...Has anyone started it yet?

[Gibbsbet in reply to marklin1700]

I just got approved for the PIQRAY and will receive the pills Friday. My oncologist feels this chemo has shown great response to MBC. I've been told to take it with ZYRTEC after the evening meal due to becoming drowsy a side effect.

[mph2 in reply to Gibbsbet]

I will receive mine tomorrow, so I’ll keep everyone posted about the side effects... stay tuned. They didn’t tell me to take it with anything else but food and Zyrtec always made me horribly sleepy when I took it for allergies, so I hope they don’t recommend that. They really told you to take it with Zyrtec to help with the drowsiness? Seems like that combination would make you twice as drowsy? Just curious... Praying it works for all of us & the side effects are minimal!!!🙏🏼🙏🏼🙏🏼

[Gibbsbet in reply to mph2]

No the onc says it works with PIQRAY somehow. But since both cause drowsiness better to take after supper. I believe it is for the potential of a rash

[mph2 in reply to Gibbsbet]

Ok that makes sense! Hopefully it takes care of that side effect before it even starts!

[Gibbsbet in reply to mph2]

Yes....the glucose issue worries... one more thing that Ive never had an issue with.... chemo 😩

[mph2 in reply to Gibbsbet]

I’ve never had glucose issues either. I’ve cut down on sugar quite a bit since the MBC diagnosis in April, but I’m going to try & cut back even more given this side effect. I figure I can always satisfy my sweet tooth with fruit and it’ll be healthier🍓🍏🍉🍐🍇🍑🥝🥭🍒😋

[Gibbsbet in reply to mph2]

Same here. you take care

[SoCalLady in reply to Gibbsbet]

How are you doing so far on Piqray?

[Gibbsbet in reply to SoCalLady]

I'm into my 3rd month of Piqray. No rash, some nausea and occasional diahhrea.. I'm just very fatigued. I am also on XGEVA injection for bones and the Faslodex injections monthly. I also have the dry mouth with a metallic taste .

[Shelby4now]

Thanks Sandra. I guess we will have to wait awhile longer

[Judyww]

I'm on piqray now. How are you doing?

[SoCalLady]

I started Piqray and Faslodex the same day. 11 days after starting Piqray, I developed a terrible rash, all over my back, thighs, legs, breast, and arms. I was so itchy I couldn't sleep or do anything. Onc told me to stop taking Piqray. (I was only on 150 dose.) and then put me on Claritin, Pepcid for hives, and Cortizone 10 cream for itching. A week later, the rash was gone so he wanted to start me back up on Piqray to be taken with Benadryl with dinner. Within 2 hours, I got the rash again. They're stopping the Piqray for three weeks, then want me to restart the Piqray every other day after I load up my system with a cocktail of Claritin in the morning, then Pepcid, and Prednizone 10mg. everyday. This won't start until after Thanksgiving because we're going out of town and I didn't want to be experimenting with these drug while on vacation. Meanwhile, I take my blood tests and my markers have gone down from 1,246 to 985. Yea! They contribute it to the Piqray in spite of the low dose I had taken. As I said, I started Faslodex at the same time and the day before my 3rd dose starting having pain in my lower back pelvic area. I asked if might be the Faslodex kicking in. They didn't think so and I got my 3rd injections in my buns. The next day my right bun hurt like hell, but the left was okay. The pain today has spread to a larger area and I can hardly walk.

We'll see what happens tomorrow.

[Gibbsbet]

I was just taken off Piqray 2 weeks ago. Scans in early March showed tumors we're stable but tumor markers almost doubled. My oncologist.has discussed the next treatment will be Abraxane. My bone and cat scan early March, showed the tumors we're stable but the tumor markers had almost doubled. My onc says the markers show the cancer is very active. Has anyone been on Abraxane?