I was on Xeloda and it stopped working. My cancer numbers went up. Today I started Piqray. I also started Metfornin for high blood sugar as this is a side effect of Piqray. I went to Sloan a few years ago and they did a full range of tests and told me my cancer could have a mutation.
My oncologist is in Rochester NY and worked with Sloan on my treatment plan. Please consider using a renown cancer center for an additional option.
Any Piqray users? Any suggestions.
Thanks Reenie
Cannot help you with Piqray, but I also will give a shout out to Sloan.
Thanks. Sloan worked with my oncologist in Rochester and I had the mutation. Wanted to find other Piqray patients. My oncologist has 1250 patients and only three on Piqray. Thanks Reenie.
Hi, Reenie!Not on Piqray, but just sending prayers and love as you begin this new treatment!! God bless you!
💗💗🙏🏻🙏🏻 Linda
There is a piqray and pik3a group on Facebook with lots of relevant discussions, hopefully this link will work facebook.com/groups/1699418...
I have the Pik3 mutation but haven't started Piqray yet.
I was on Xeloda for over a year. Have been on Piqray for four days. So far feeling better. I was afraid because of the side effects. Have more energy. Went out ballroom dancing last night. Had so much fun. Thanks Reenie
How long were you on xeloda? Was it bad? I’m pretty sure I’ll be starting it in the near future. Wishing you the best with Piqray.
Stacy
I was on Xeloda for over a year. Then my numbers started going up. There was another drug but it effects your heart and I had a heart attack about 3 years ago so that was out. I have been on Piqray for four days. Feeling better. Also getting fulvesterant shots. I had a complete work up at Sloan Kettering and the oncologist works with my Rochester oncologist. They do this world wide. It’s good to have a second opinion. Best. Reenie
Yes. Thank you Sandra. My situation is so crazy. Herceptin has worked well for me. My last ct actually said on the first line that there was no evidence of metastatic disease. However I had breast cancer that had metastasized to my skin. Guess the ct couldn’t see that. Wouldn’t you know that it is her 2 negative. Uggg. Herceptin has it under control in my vital organs but in the local area of my breast it likes to grow. Uggg. My onc is considering changing me to xeloda. I had the skin Mets surgically removed. It was pretty extension. 26 cm incision. I think I may have radiation there. Guess I find out in the next week or so. I’ll keep y’all updated. As my surgeon told me we will just keep chipping it away.
Hi Reenie,I've been on Piqray and Fulvestrant since 2 Jun 2021 after progression of ILC mets in abdomen and now adrenal gland (biopsy showed PIK3CA mutation, ER+PR-HER2-). Starting Cycle 5 next week.
I've experienced several of the side effects but for me, they've all been manageable.
1. Rash in first 10 days (over 2/3 of body, below neck) - managed with topical steroid cream, benadryl at night (in addition to daily zyrtec), then I needed an oral steroid (prednisone) for a bit. No issues since.
2. stomatitis - mouth sores, mild and occasional; used some steroid mouth rinse for a few days
3. hyperglycemia - after 1 month on piqray. started on metformin and daily finger sticks to check blood sugar. tried to keep it below 160. increased dose of metformin up to 2000mg daily (1000mg twice a day), then this past week, just added Januvia 100mg daily. Saw very quick decrease in fasting finger sticks - now well less than 140 (actually less than 120) so very happy about all that.
4. diarrhea - either the piqray or metformin or the combo of the two. I'm at risk for bowel obstruction based on tumor burden in my lower colon area, so diarrhea really is more okay for me than constipation. I just have to work at balancing things out.
CT scan at 2 1/2 months is essentially stable so we'll continue this line of targeted therapy. Biggest impact for me so far is adjusting to "diabetic" diet - learning about carbs, fiber, activity, stress, etc. and how they all affect blood sugars. Fortunately my husband Gary is a jewel and really supports me (plus he does most of the cooking).
I've also been dealing with some sadness and the emotional implications of having progression. I was blessed with over 3 1/2 years on Ibrance and Letrozole before needing to transition to the next line of treatment, but I've been feeling the weight of the meaning of "progression". I continue to work full time and am pursing a graduate degree, so that helps keep my mind occupied. Talking w/ my husband and my pastor also helped. And I've been more open with my professors and my work colleagues about what I'm wrestling with and they've been incredibly supportive.
My onc team also was somewhat less familiar with Piqray, so I was busy showing them the rash (NP, nurses, etc.) so they could see what some of the side effects actually looked like. That helped me to feel like an active part of the care team.
I wish you the very best in your Piqray journey!
Tami 🤗
Thank you for such an encouraging report. You progression story falls in line with my story.
I was diagnoised Mets to bone in Jan 2016 NUVO. On Ibrance till this past March. tried immunotherapy with Pembro. But one tumor on liver kept growing. Now they have me on Piqray. I feel much better than I thought I would. Not looking forward to a possible diabetic diet. But it will help get my weight down to my goal 
Thank you Tami for your full explanation of Piqray. I had bone mets that progressed to liver mets after 5 years. So now Piqray. Last week was and is the first time i have felt like a real cancer patient. I got a high fever for 7 days off and on and up and down. Thought i had flu. Tested neg for covid. Day 4 i looked in mirror and i was covered on face down to waist and some on legs a scarlet rash. ! Called pharmacy and she said its probably the piqray rash. It was a quiet rash at first but then became uncomfortable, burning with itching. It burned enough that i could not sleep! I wanted to throw those pills in the trash. Also right away I felt my appetite slow down. Since the fever i have developed mouth sores and every surface area in my mouth is tender and swollen including lips. Could not eat!
But fever stopped 2 days ago. My mouth is beginning to heal. Cant eat normal yet. But i found 3 things so far i can eat. Today is 6 days since rash started. I think it may be gone today. Sh! So i will press on. Oh yah!
My sugars used to be normal now 265 when i can barely eat. But i will deal with that next Monday. I have fr visit for the hyperglycemia.
You encourage me that you have stayed the course. I may have to too then……. Thank you for your clear explanation of Piqray. I needed it today.
Pam 🙂
Yes. Piqray is different. I am on Benedryl at night. No rash and only on little mouth sore that went away the next day. I got my foslodex shots today. Make sure they are warm. We put them in a warming blanket and don’t stand on the leg where you get the shot. Put ice packs on right away and walk with the ice packs for 15 minutes. Then at home on a.heating pad. I also take Tylenol before I go to the doctor. My sugar is up to 265 so I am on metformin. Waiting for my internist to call about the dosage.
Taking care of my MBC is a full time job.
Try the Benedryl at night. Also helps with sleep.
Good luck to you. Reenie
TamiDo you have insomnia with the piqray.? I have been on it 18 days. Had all those reactions and now noticing I can’t sleep at night even tho i am dead tired.
I take Benedryl. Good for rash and sleepy time.
I started on Piqray 10 days ago. Tomorrow I go in for a sugar blood test to see if it is affecting my sugar levels. Otherwise, It seems to be an appetite suppressor. Which is good for me.
They also put me on Claritan with the Piqray since its know to cause skin rashes. So far no problems. I wont know if its working until end of Oct 2021. I had to change from Ibrance since the cancer went from my bones to my liver. I was on Ibrance for 5 years.
Do you have a lot of side affects? Is it working for you?
I am on Benedryl. Less side effects than Xeloda. No problems with hands and feet. My sugar is up so I am on Metformin at night. I just got a freestyle sugar meter to check my sugar in the AM. Having MBC is a full time job. Oh yea, have to get weekly blood tests. But I still like Piqray better. Best wishes Reenie
I am having the mouth sores to point i can barely eat. Lost 7 pounds. If my mouth would heal and taste buds came back i think i could cope better. Any advice? I have the magic mouth wash.
Pray that you have better luck with Piqray than I did. Ibrance quit working after 11 months, so switched to Piqray with horrible side effects for 10 days when on day 10 I had to go to ER with anaphylactic shock. Can't say 100% that is what caused it, but was the only new drug. Now on Xeloda for 5 or 6 months and has stopped working so now my oncologist wants me to go on chemo drip which I did 6 years ago with breast cancer and it was horrible especially when they tell me my stage 4 MBC is treatable but not curable. The mets on my liver are growing and my cancer antigens are going up. Does that mean I'll be on drip chemo for the rest of my life? Has that happened to anyone else. My Dr will not explain the options until I'm ready to start. My husband and I have trips planned until Nov 7 and I talked her into waiting until then but she refuses to discuss the options until I'm ready to start. I'd like to get some info that I can digest and research before I'm ready to start. We have a flight to CA to see my sister and a wedding in Jacksonville, FL. I'm planning on going to the Mayo Clinic in Jacksonville for a second opinion. Anyone else taking Fenbendazole? Thinking about doubling up on that in the meantime if not a problem for my liver. My liver functions and enzymes are normal but the mets are growing and more are showing up. Not sure about the Fenbendazole with the liver mets. Taking Tudca for liver support. Anyone experiencing any of this? Love and blessing to you all❤️ Sandy
I was on it for two years. Other than the cost, some itching, and after about 18 months, blood sugar issues, it was tolerable. (I moved to City of Hope cancer center near Pasadena when my prior onc said I’d have to move to IV chemo after everolimus/exemestane quit.). Quit taking Piqray after going into the hospital in Sept ‘22 with a jaw infection at the site of MONJ due to Zometa and Xgeva. Switched to Xeloda in October..
I have the mutation that Piqray is supposed to help However, I had such a horrible rash and allergic reaction to Aromasin and Affinitor that my dr is reluctant for me to take it
Hi,
I haven’t been on those two medications. I have been on Piqray for over a year and a half. All cancer medications are harsh on the system. My side effects are diarrhea every day. I take two Tylenol 650, an oxycodone and Pregabalin afterwards for my pain. I had a gastrojujunostomy five and a half years ago so we don’t know what my intestinal tract looks like.
I take Claritin as I have a slight rash on my face. I have Fulvesterant shots monthly. I am type two diabetic from Piqray, but I’m here to help you and enjoy every moment.
I live in Rochester NY and my oncologist and endocrinologist are 300 miles away and work with my local hospital. MSK, Memorial Sloan Kettering Hospital in NYC has a research lab run by Dr Sarat Chandarlapaty that researches my mutation. Maybe yours as well. For a second opinion, contact MSK on their website and ask about Dr C.
I had my first cancer lumpectomy in January 2010. My MBC was diagnosed 5 1/2 years ago. The oncologist said that only one percent have a recurrence and I was it.
Best in navigating this disease. Dr. C told me he has other medications once this one stops working. Stay mentally strong. It is what we got. Reenie
Anyone heard of Piqray?
Started on piqray & fulvestrant yesterday
What’s next after Piqray?
Doing good on Piqray and PetScan
