Jun 29, 2019 06:56PM GlobalGal wrote:
Here's an article with more information on Piqray:
A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.
Posted on: Jun 29, 2019 05:35PM
I just started on Piqray and Faslodex after Ibrance and Arimidex stopped being effective. I am weakly ER positive and PR negative, so I can't say it was a complete surprise that at some point that would occcur. I would be interested in hearing from others how you are doing on this very new medication. So far, the only side effects from Piqray have been nausea and diarrhea, which were a regular part of the Ibrance dance anyway. Thanks!Log in to post a reply
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Jun 29, 2019 06:56PM GlobalGal wrote:
Here's an article with more information on Piqray:
Jul 3, 2019 10:57AM jobur wrote:
Hi Red Berries, I am supposed to start this tx in a couple of weeks. I would really appreciate updates on how you are feeling and what se's you are experiencing. Hope you are doing well.
Jul 3, 2019 01:03PM - edited Jul 3, 2019 01:03PM by ann273
Glad you someone started this topic, RedBerries, I think I might go on Piqray at some point. Hope you all have a relatively easy and successful time on it.
Jul 3, 2019 01:03PM RedBerries wrote:
I am on day 6 of Piqray. So far, the side effects have been diarrhea and some nausea. I feel less fatigued than when I was taking Ibrance and Arimidex. It hasn't negatively affected my glucose yet, which I understand to be one of the more common side effects.
Thanks for checking in and let's stay in touch in regard to how we are both doing on this combination.
Jul 3, 2019 01:05PM ann273 wrote:
RedBerries, adding the word Alpelisib might help get the thread more attention. As the person who started the thread, if you cannot do it, the Mods can help us.
Jul 3, 2019 01:10PM GG27 wrote:
There is a thread on Alpelisib.
Jul 10, 2019 10:16AM jobur wrote:
Hi RedBerries, Just wondering how you are doing 2 weeks in. Must be time for the 2nd loading dose of Faslodex? How are you tolerating the shots? They take some getting used to, but you do get used to them. I'll be starting this combo next Tuesday so will be able to keep you company. Hope all is well with you.
Jul 10, 2019 05:32PM RedBerries wrote:
Yes, I just finished the first package of Piqray and have received two doses of Faslodex. The shots are very tolerable, just a little soreness at the injection site the next day. The only SEs I have had with the Piqray are diarrhea and some nausea. Both of these SEs have been more pronounced than when I was on Ibrance and Arimidex. I keep Imodium nearby at all times. On a positive note, I am less fatigued than I was on the prior treatment.
I have had a significant weight loss since starting treatment in January (165 pounds down to 125). My oncologist doesn't seem concerned about that, but it is startling to go from a size 12 to a size 6 that rapidly. Have you experienced weight loss also? We have the same diagnosis (I need to update my profile with that info).
Good luck with your start on this new combo and keep me up to date, as I will you.
Jul 18, 2019 07:21PM RedBerries wrote:
Checking in to see how your first week of Piqray is going. I am still doing OK, but there is definitely more nausea and diarrhea than with Ibrance. I keep losing weight because it is often difficult to keep food in me long enough to absorb the calories. I am going to start taking Zofran as needed.
Hope the first week is going OK for you.
Jul 19, 2019 12:31AM jobur wrote:
Hi RB! I just got my Piqray today and took my first dose tonight. I had D today, apparently from the Fas shot on Tuesday?Weird, I don't remember having that reaction last time.
Sorry you are experiencing a lot of nausea and D with this drug. Hopefully it will get better as your body gets more used to it. That is a pretty dramatic weight loss in only 7 months. Did Imodium stop working for you? That is what my mo recommended for diarrhea too. Have you heard of the BRAT diet? It stands for bananas, rice (white only), applesauce, and toast. Don't know if it works or not, but maybe worth a try to get things under control. How is your glucose after 1 month?
I'm concerned about skin reactions, so I started taking Claritin tonight too. Did your mo suggest this to you? SusaninSF recently wrote in the Alpelisib thread that her dermatologist said Zyrtec was best for cancer med induced rashes. Of course, I read that was just after I bought the Claritin.
Best wishes to you!
Jul 22, 2019 12:45AM RedBerries wrote:
I am happy to report that after one month on the Piqray (and with the assistance of Imodium and Zofran) ,the gastro side effects are lessening. My fasting glucose is good, I have developed a tremendous thirst, so I need to balance filling up my (scrawny) stomach with liquids and getting food in there to pack on some pounds. My MO does not seem concerned about the weight loss but it is a lot. Ice cream, nuts, pasta, noodles are all a daily menu for now. I had heard of the BRAT diet and those foods do help.
I have not had any skin reactions yet.
Hang in there with your treatment. We are headed out for a week in Montana/Glacier Park area, which will be very nice. I aim to return a tad heavier.
Jul 22, 2019 11:11AM jobur wrote:
That is great news! Hope the gastro issues continue to improve and yay! for normal glucose and no rash. Congrats on completing your first cycle of this new drug. Tx changes are always a little scary, and more so with Piqray as it is so new.
So far, so good for me. I am back to having bad heartburn every night like I did with Ibrance, but I haven't noticed any other ses yet. First lab tomorrow, hoping I can follow your lead and have no spike in glucose.
Hope you have a fantastic trip to Glacier and enjoy eating some delicious and fattening food! Happy trails to you!!
Aug 3, 2019 02:54AM Greenteatwo wrote:
Hi ladies- I started Piqray 17 days ago. On day 14 my labs showed a non fasting blood glucose of 497... Not a typo. So my MO put the Piqray on hold. I was experiencing severe fatigue, which I reported to my care team at day 7, and was very thirsty which I attributed to the drug. I also had blurred vision but I thought I needed to fill my new eyeglass script!
My MO had me receive IV fluids for dehydration and 10 units of insulin. By the time I left the clinic my God was down to 365. She prescribed 500 mg of metformin and had me return the next day for glucose test. Second day 450, went through same routine. Third day glucose at 275, so it is coming down.
Once it stabilizes will return to Piqray. Perhaps with a dose reduction...... We shall see and I sure hope so! I'll keep you posted.
I hope you do not experience this SE, but what out for them.
Aug 4, 2019 12:44PM RedBerries wrote:
Welcome to the chat. I too had a high blood glucose, though mine was a fasting test. I started on Metformin last week. I also have constant thirst. Honest Tea lemonade tea has become my new friend. This last week, I also felt fatigued to the point where I came home from work and just slept for several hours. The fatigue comes and goes. I guess this just comes with the treatment. Since my first treatment (Ibrance and Arimidex) did not work, I am determined to give any subsequent treatments full speed ahead notwithstanding SEs.
It is nice to have other Piqray users to chat with. Good luck to all of us with this new med.
My biggest challenge right now is finding a way to stop weight loss. When I started treatment in January, I weighed 165. I am now below 120. At 5 ft 8, that makes for a very skinny person. Never thought I would be a size 4!!
Aug 7, 2019 05:31PM HopeinAZ wrote:
I will be starting PIQRAY next week. My tumor markers have doubled in the last few months and just finished 3 weeks of radiation to affected breast.
One question I will be asking my oncologist is if retrying Ibrance later is possibly an option??? Recent research by Dana Farber suggests taking a break from Ibrance for a few months reverses resistance (in rats I think). Anyone had this discussion yet?
Aug 7, 2019 10:01PM RedBerries wrote:
I have not heard of that study, and thus haven’t asked the question yet. But I will when I see my MO. My original tumor (12 years ago) was highly ER and PR positive, and HER2NU negative. When the cancer metastasized it came back as weakly ER positive, PR negative, and variable on HER2NU. Ibrance worked for a few months and then stopped working. I agree that if Piqray doesn’t work, we are down to fewer arrows in the quiver. It would be nice to have as many as possible.
Aug 9, 2019 01:04PM - edited Aug 9, 2019 01:13PM by Kmhamill13
I am new to this community, and I do not have breast cancer myself. I am a med/surg RN with some experience in Oncology as well, but I am here looking for open, honest information from other Piqray users for my mom.
Back story, as short as I can make it: She is 80 years old with HR+/HER2-NU. She was originally diagnosed in 2004, had lumpectomy and radiation, and went ~5 years before recurrence with Mets to the liver. Fast forward 10 years, and over the last 6 months growth has been progressing, with significant growth in bone Mets seen since January and a significant increase in over all symptoms (fatigue, pain, decreased interest in things she used to love doing, difficulty ambulating, etc.) over the last month or two. Bone biopsy in July showed weakly active hormone receptors, HER2NU- with the PIK3CA mutation, which makes her eligible for Piqray.
My mother is highly sensitive to medication side effects (ironically, she mad minimal side effects with her 2009 chemo regimen of paclitaxel/Gemzar/bevacizumab).
Long story short, her quality of life is declining quickly. She is not going out, she is in significant pain, etc. We are trying to help her make the decision between hospice care and attempting this Treatment with Piqray. As a horrible side note, she no longer trusts her oncologist, and doesn't feel like her oncologist has her best interests in mind. I have noted that her oncologist is terrible at communication, so I'm not really sure I trust her either. Unfortunately, at 80, and after 15 years of dealing with this, she's not too keen on going through the effort of finding a new oncologist either, which is another benefit to hospice.
Unfortunately, as a new medication, there is not much “real life, real patient" information available out there, if there even is any yet. My main question is, have any of you out there been seeing any significant improvement with Piqray, or is it simply stopping progression where it was at?
If it will improve symptoms, she is willing to try it, but if it's just going to keep her in limbo, we feel that hospice will be able to give her a better quality of life by helping her with simple household tasks, symptom management etc, so she is not constantly wearing herself out and worsening her pain.
Any insight you all are willing to offer would be greatly appreciated. I just want my mother to have as much information as possible before she decides where to go from here. Of course as a daughter I would love to have her around longer, but as an RN, I know the reality, and I don't want her to be miserable for whatever time she has left with us. Thanks in advance!
Aug 9, 2019 03:59PM Moderators wrote:
Hi kmhamill, and welcome to Breastcancer.org!
We're so very sorry to hear of your mom's progression, but we're really glad you've found us. You're sure to find our amazing Community a valuable source of information, advice, and support -- we're all here for you and your mom!
You're so sweet to advocate for your mom and try and get some real-life practical experiences with Piqray -- we're sure others will be by shortly to weigh in. In the meantime, please let us know if we can do anything at all for you.
We look forward to seeing you around the boards, and wish you an easy path on decision-making.
Aug 9, 2019 04:14PM Kmhamill13 wrote:
Thanks for the warm welcome! Her appointment with Oncology is on Tuesday, so I’m trying to gather any info I can prior to that appointment. I’d have her on here, but she’s not tech savvy at all, and I feel she would get overwhelmed. Looking forward to any insight you folks are willing to share
Aug 9, 2019 10:59PM Cure-ious wrote:
Go on, seriously, your mom is 10 years out from a liver mets diagnosis?! Go, Mom!!! That's phenomenal!!! I do not have experience with Piqray, but how about 1) take her to a new oncologist; 2) ask if she could start on a reduced dose of Piqray to try to circumvent diarrhea problems; 3) ask about adding on an NSAIDs, because they strongly inhibit the growth of PI3K mutant cancers (see link below); and 4) also ask about hospice, it does not have to be for end of life but because she needs extra help and monitoring and anyway she totally deserves this!
Hopefully it would help her with current symptoms, and prevent additional problems from emerging.
Here is the link about NSAIDs for PI3K mutant. The paper shows that the mutant PI3K kinase turns on COX2, and so adding a COX2 inhibitor like Celebrex or aspirin blocks the growth of those cells. It may make the Piqray work even better, and also help with arthritis pain..
Aug 10, 2019 06:18PM RedBerries wrote:
Hello and welcome KM,
I have now been on Piqray for about 6 weeks. There are some strong side effects, primarily nausea and fatigue. I am using Zofran for the nausea and sleeping as much as possible for the fatigue. I was startled to see my CA 27.29 marker jump up this week to 789 from 474 last week. I don't know if that is because the Piqray isn't working or because the tumor markers can jump up when a new treatment is started. Will discuss with MO on Tuesday. I would say that if your Mom can adjust to a new MO and seems motivated to at least try a new treatment, the Piqray is worth it albeit at a lower dose.
Please keep us up to date on how both of you are doing.
Aug 14, 2019 10:28AM Kmhamill13 wrote:
At moms appointment yesterday, her glucose was over 400. Her Oncologist actually recommended not doing the Piqray and told her that it would more just pause her progression and symptoms where she is currently at, which was what I was worried about because she is so uncomfortable already. We have decided to go the hospice route, to try to get her some help around the house, so she’s not having to worry about the little day-to-day stuff. As a nurse, I love hospice, and I think at this time it will improve her quality of life. Thanks for the responses, everyone! Best wishes and best of luck to all of you on your journeys!!
I will still follow along, as I love to have any information I can for my patients
Aug 22, 2019 07:00PM RedBerries wrote:
Hello fellow Piqrayians. I am having some jitters right now. Going in for a PET scan next week to see if the Piqray is working. My tumor marker test jumped from 474 in July to 789 in August. Not a good sign. I know there can be a jump when a new treatment is started, but even my oncologist thought that was a big jump. I am hoping for the best, as the next step will be IV chemo.
What a week. Even though I never had lymphedema when I had a bilateral mastectomy with nodes removed in 2005, it has decided to appear in my right arm now. So I get to sport the compression arm sleeve and gauntlet. Today, I took my first trip to a dispensary (marijuana and THC products are legal in CA) and obtained a CBD/THC tincture to help stimulate my appetite and ideally gain back some of the weight I have lost. Hah! I get to eat all the ice cream I want and take the cannabis product at the same time.
Wish me luck ladies. I sure would like to remain on a targeted therapy rather than weekly IV chemo.
Aug 30, 2019 10:26PM Mountaingirl53 wrote:
I will be starting Piqray tomorrow and am very worried about side effects. Has anyone on this new drug experienced significant hair loss? I am very worried about nausea as well. Any information is appreciated!
Aug 31, 2019 11:01AM jobur wrote:
Welcome Mountaingirl! I have been on Piqray with fulvestrant for a cycle and a half. So far it has been very tolerable. My main se is heartburn/indigestion for which I've been eating Tums and Zantac on a daily basis. Also fatigue that feels more like lethargy than fatigue. Hard to get my butt out of the chair, but once I do it's okay. High glucose is also one of the main se's. Mine has risen to 125, outside of normal range but not high enough for metformin. I have experienced NO hair loss, yay!! I did start taking Claritin to ward off rashes and have not had any so far. I had some nasty mouth sores for about a week, but they went away and have not returned. Another common se is diarrhea, but I have not experienced any problem with that. Will you be taking this drug with fulvestrant? That may cause some nausea, especially during the loading doses. Wishing you few se's and good results with Piqray. Keep us posted as to how it goes for you.
Redberries, Thank you for starting this thread and for keeping it alive. I am so sorry to hear your TMs went crazy and you are experiencing lymphedema after all these years! I recall some people's TMs went wild when they started Ibrance, but I don't think it necessarily meant it wasn't working. Have you gotten results from your PET yet? Fingers and toes crossed for good results for you! Have you had any success in putting on weight? I only lost a couple of pounds after starting Piqray, but it seems I can eat whatever and not gain a pound. Enjoy your ice cream and cannabis (I'm so jealous, it's still illegal here) and let us know how you are doing. Best wishes!
Aug 31, 2019 10:52PM Mountaingirl53 wrote:
Thank you so much for your reply. I have been on fulvestrant shots and Kisqali for 9 months. My tumor marker continued to increase and I now have a compression fracture of T6 which I am having a vertebroplasty on 9/4. Hope it helps the discomfort.
So glad to know you have not lost your hair. The wigs are just too hot for me.
I hope you continue to do well. Will let you know in a week or so how things are going for me.
Sep 1, 2019 10:56AM RedBerries wrote:
I am on my second month of Piqray. I’ve had my fair share of nausea, with some vomiting, but am getting better at knowing which foods trigger that. I take Zofran before a meal if I am out with others, to avoid the social unpleasantness of the gag and run routine. The nausea seems to be tapering off, thankfully. In regard to hair, mine has always been short and fine so I don’t know if I am a good resource. I haven’t had any bald patches or clumps fall out. Just a little change in texture making it more fine (if that was possible!)
Keep us up to date on your Piqray adventures. Half the battle is figuring out how to open that pill pack.
Sep 1, 2019 11:03AM RedBerries wrote:
Good morning Jobur,
I am happy to report that despite what seemed destined for a bad PET outcome, the one I had last week shows the Piqray is working. There are some new liver Mets, but the existing bone and liver Mets were smaller in size and density. This comes as very good news as the next step was going to be weekly IV chemo.
Still no explanation for the large spike in the TM. Having that test again this week, so we will see. Still working on my weight. Must say we are fortunate to have cannabis products legal here. The CBD/THC tincture does great things for rest, controlling nausea, and increasing appetite. Every half pound gained is a victory!
Hope your mouth sores are better. They too are a pain.
Sep 1, 2019 07:20PM - edited Sep 1, 2019 07:25PM by jobur
Redberries, That is great news that your PET showed this combo is working for you!! Doing a little happy dance for you here! Also good to hear mj products are a help. Keep on keeping on!
I have been wondering if anyone besides me was have trouble with that awful packaging. I asked my specialty pharmacist if it was okay to remove them and put them in my daily pill box. She said it was okay, so at least now I only have to fight with that thing weekly instead of daily. Still a pain in the butt, but if this stuff works I won't complain.