Starting new treatment with Piqray

[Gaily71]

Hi all,

Has anyone started treatment on Piqray? I was on Ibrance but I have a mutant on that will not work with ibrance. New treatment is faslodex ( used before), Piqray and aroasin. Please share your experience on the Piqray and aromasin!

[Hidden]

Hi Gaily71,

I don't have experience with either of those treatments but Piqray will be a future treatment for me so I'm eager to see what people say about it. I think Aromasin = Exemestane (?) which my docs have also mentioned.

I think I've seen posts here from folks on both of those, maybe in combination, so until folks with experience respond you might be able to get some info by using the search bar, upper right?

Also, I'm curious about the mutation that indicates that Ibrance won't work for you...and are you saying that you had progression on it, or that the tests indicated that it was not the best choice for you?

Good luck with the new treatment!

Lynn

[SoCalLady]

I have been on a Piqray, Faslodex and Letrozole combination for three months now. Piqray is a harsh drug. At least a week before starting Piqray, you need to start taking allergy medicine. I didn't when I started out and only started with a half doze of Piqray 150 mg and developed a very horrible rash within 11 days. My onc didn't know to put me on allergy medicine to prevent the rash. I wrote an extensive post on this site so I'm not going to get into that again. You might look on the right column under related posts. I am presently taking Claritin in the morning, Pepcid (Famotidine) 20mg) during the day, along w/5mg of Prednisone (it started out at 10mg but I worked my way down), all just to ward off the hives. I now have worked up to a full dose of Piqray 350mg and am tolerating it okay. Except, and this is a big except, it has thrown me into full diabetics. My blood sugar went to 300 the first month. It now hovers in the 200 range. Now I have to take a diabetic pill, and I'm suppose to prick myself a couple times a day to measure my blood sugar. I don't; I'm in denial. They say the diabetes will go away once I'm off Piqray. But, I like my carbs and I'm not very good at eliminating them. My markers have gone down while on the drug, but are still over 1,000, so too soon to tell as I haven't been on full dose very long. If your onc doesn't tell you to take allergy pills, fire him. Let me know if you have any questions, and keep us advised as you progress w/Piqray. There never seems to be many posts on this drug and I' m very interested to hear how other people are doing. I don't know what aromasin is; can you tell me?

[Sweeten_1 in reply to SoCalLady]

Thanks for advice. I started vercenio and it is starting to to keep Mets to omentum and peritoneum under control except need acites drained. Had the genetic testing done and recommended piqray. So when vercenio stops this will probably be next. Had ibrance and faslodex and then xeloda. Dx 2012. Take care,

[Gaily71 in reply to SoCalLady]

Thank you for sharing your story. I had a few questions if you don’t mind answering. I wanted to know if you are plant based and also do you eat processed food and caffeine? I’m not judging you if you are but no one can seems to tell me if being vegan and not having processed food has made a difference in their tolerance to the drug. Again thank you for sharing your story

[SoCalLady in reply to Gaily71]

I am not plant food based, " try" to stay away from processed food, and I do drink a cup of coffee every morning. I am tolerating the drug quite well right now, except it has put me into hyperglycema for which it does to 70% of it's patients. My onc has never told me to cut out anything, or go on a special diet, etc., nor is there anything that I have found in the Piqray literature that says you will do better on this med if you adhere to a special diet. However, this drug can alter your taste for food. Many foods just taste off for me. Also, I use to like my glass of wine at night with dinner. No longer. With this drug, the taste and smell of wine is disgusting to me. If you're already a vegan and start taking this drug, who knows, maybe you won't have the type of side affects that I did. However, as we all know, being a vegan doesn't immune you from getting cancer.

[Gaily71 in reply to SoCalLady]

Yes but all these changes I made after my mbc diagnosis so this is why I ask. I also cut all alcohol and only eat nature sweets like dates. I don’t really care about the loss of taste bc I just want to be here for my 8 year old son. I will eat whatever makes me stronger. Anyway that you for sharing. It gives me hope to hear you are doing well on it

[Buffwright in reply to SoCalLady]

I’ve been relatively lucky with Piqray and Fulvestrant since Oct ‘20. Markers are good. No rashes. Slight elevation in blood sugar. But I’m really fatigued. My hair began to thin after 5 months and is now stick straight — a diminishing haystack. And I have little appetite. I lost 15 pounds at the end of exemestane and everolimus and now have lost a couple more. I started slender and am now skinny. Everyone is different. The best part is the markers!! It’s working! From one SoCal girl to another, I hope you’re still on it!

[SoCalLady in reply to Buffwright]

Nope, the combo stopped working. I'm now on Xeloda because mets are now in liver and bones. Will probably be doing direct radiation to the liver in a month. I did lose weight w/ Piqray, but gained it all back after I got off it. Also, my diabetes is gone now that the Piqray is gone.

[mariootsi]

Wish you the best with your new targeted treatment. Evidence is that Piqray is very effective!

[SoCalLady]

Of course, I would do that exact same thing if I was your age with an 8 year old son. I'm 75, so I'm looking at things differently. I like to eat so don't plan to deprive myself at this point. I think cancer thrives on sugar and carbs and I am amazed the main streamed doctors

don't recommend special diets for us. Let us know if and when you start on Piqray.

[Gaily71 in reply to SoCalLady]

Will do

[Snallygaster]

I was put on Piqray and Fulvestrant in June after being on Ibrance and Letrozole for 22 months. That combo stopped working. I was first on a half dose 150mg for 6 weeks to test for tolerance. About 3 weeks ago, I started to experience a face and neck rash with face swelling when waking in the morning. The swelling would go down during the day. The rash would clear up after a few days and then return. I thought it was a reaction to foods I consumed as I take the Piqray after breakfast. My Oncologist(who is new.. the other one retired. I am not sure I like the new one but that is a different problem) told me to stop the Piqray for two weeks.

I am now worrying that my cancer will be spreading if this line of treatment is not going to be tolerated by my body. Fighting depression.

[Hidden in reply to Snallygaster]

Snallygaster (and Gaily), thanks for sharing this...Piqray will be my next treatment, probably starting pretty soon (we'll see...).

I'd read about the common issue of getting diabetes, but I'm sort of dismissing/minimizing that concern, my doc said that I was unlikely to have this issue due to my body type (??). Plus maybe it helps that I do fasting, which helps the body regulate insulin...

But I hadn't focused on the allergy issue, which is concerning to me...I have a history of very severe allergic reactions to numerous foods and drugs (various antibiotics, CT contrast dye, anesthesia....).

So I will do my best to remember to start off with anti-allergy treatment when I make the switch. Allergies scare the s#@! out of me...I've spent too much time unconscious in the back of ambulances as a result of them!

Good luck with it!

Lynn

[Adele_Julia in reply to Hidden]

Hi Lynn, Piqray is likely on my horizon as well. Are you currently on the CoC protocol with iBrance and Faslodex? I'm wondering if it also works with Piqray. I'm planning to start the CoC protocol in January

[Hidden in reply to Adele_Julia]

Hi Julia -

I'm teetering on the brink of the COC, but not quite ready to try it. We'll see.

From what I understand, *if* it does work (this is obvi debatable....), I don't think it matters what other treatment you're on...

Best,

Lynn

[Gaily71]

Hi ladies I have been on Piqray since early May. I go to acupuncture and my dr digested two herbal supplements for controlling glucose levels caused by Piqray. I also take Claritin 2 x a day. Piqray does tire me out so I take with dinner. I have some small rashes that o control with calendula. I have lost some weight but even though I am not always hungry I eat especially when taking Piqray.

Hope all goes well for all of you and there is a support group on Facebook that has been very supportive

[Sparky95]

Thank you for sharing. I am just going to be starting Piqray and Letrozole after being on Ibrance and Fulvestrant for 20 months. I've been nervous. I am curious to know what herbal supplements your acupuncturist recommended.

[Lolli2020]

Hi Gaily71,

I am new to Piqray too. I just finished 1 /day at 150mg and am now alternating 2 then 1 until the first pack runs out. Then I will go to full dose. I have monthly Fulvestrant/Faslodex shots as well. So far, I'm taking Singulair and Benadryl at night and Allegra in the a.m. and am not experiencing any rash. 🤞🙏 Since I started oral chemo 2 1/2 years ago, I've developed Type 2 Diabetes so I am keeping an eye on my blood sugar (taking Metformin and Farxiga daily). My numbers have gone up to around 130-140 in the mornings. Was even 191 the other day. (I rebelled and at late night ice cream!) I do seem to feel more tired on Piqray - but after a 2 week washout from Verzenio I guess that is to be expected. I was really nervous about taking Piqray, but so far other than a serious drop in appetite and a little more nausea than I was experiencing before (plus watching blood sugar) I feel like this is going to be a good treatment for me. I'm hoping that since the mutation diagnosis is necessary to be on this med, the treatment will be very targeted and successful. Praying for and wishing you the best, with great success in your treatment!! ~Anita

[Adele_Julia]

Hi Gaily,Ironically I just left a post before seeing yours ! I'm currently on ibrance and Faslodex (Fulvestrant) but my onc said I just tested positive for the PIK31A mutuation and Piqray is on my horizon like a few other gals but I haven't started it yet.

Does Piqray work with the CoC protocol (the 4 drugs associated and given by careoncology.com)?

[love2golfwell in reply to Adele_Julia]

Can you tell me what the CoC protocol is? I have seen it mentioned several times but I don't know what it is and am curious. Thanks so much!

[Adele_Julia]

The CoC protocol is something I'm starting next week. careoncology.com/

A lot of women on this board are doing this. Me included. I'm not on Piqray yet. Just Ibance and Faslodex.

The CoC protocol is offered by careoncology.com whereby they prescribe other medications that are known to attack Tumor Cells. They are licensed integrative oncologists.

These medications are: metformin, atorvastatin, doxycycline, and mebendazole

I've checked out all these medications on Drugs.com and the website below.

mskcc.org/cancer-care/diagn...

Careoncology are licensed integrative oncologists that do more than just throw you on iBrance or other "chemo" drugs.

I'm also a retired licensed medical attorney ! Hugs !

Julia