Topic: Piqray users, what is your experience?

Forum: Stage IV/Metastatic Breast Cancer — Please respect that this forum is for members with stage IV/metastatic breast cancer ONLY. There is a separate forum for caregivers and friends: Caring for Someone with Stage IV or Mets.

Posted on: Jun 29, 2019 04:35PM

Posted on: Jun 29, 2019 04:35PM

RedBerries wrote:

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!

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Mar 1, 2020 09:56AM - edited Mar 1, 2020 10:07AM by ann273

Cure-ious, you are absolutely right. I adjusted my diet to mostly keto. I do eat more carbs than a regular keto diet. I stop eating after 6-7pm.I am mostly on a water diet until 10am the next day. When. I check my sugar levels then the numbers even go down below 100 and I have a buffer for the rest of the day. But my maintaining a low sugar/carb diet I am able to keep my blood shugar down without metformin. I'm on day 10 and my doctor and nurse are really pleased. My sugars did spike on day 5 and I was concerned, but once I adjusted my diet, I havent had to take any metformin.I feel great on the drug otherwise. I take zyrtec twice a day and a dailuy probiotic which I really believe controls the mouth sores. It was what kept me mouth sore free on Afinitor for 3 years.

Dx 8/1/2013, IDC, 5cm, Stage IIIC, Grade 2, 11/23 nodes, ER+/PR+, HER2- Chemotherapy 9/1/2013 Halaven (eribulin) Chemotherapy 11/15/2013 FAC Surgery 2/12/2014 Hormonal Therapy 4/30/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/3/2015, IDC, Stage IV, Grade 2, ER+/PR-, HER2- Targeted Therapy 6/1/2015 Afinitor (everolimus) Hormonal Therapy 6/1/2015 Aromasin (exemestane) Targeted Therapy 7/31/2018 Ibrance (palbociclib)
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Mar 1, 2020 01:36PM Brenniejoyce wrote:

Just an update on what’s going on wit me. I’ve got the results from my pet scan and they were not good. I now have bone Mets in my lower back and my right hip. So the cancer has spread. The good news is that I started the Piqray on February 26 along with my butt shots of Faslodex. So far I’ve had five days of Piqray with only slight nausea and an almost complete loss of appetite. Which is perfectly fine with me! I was on Prednisone since January because of the pneumonitis I got from taking Ibrance. While I was on prednisone I gained a lot of weight because I was hungry all the time. So I could stand some weight loss. Thanks for the good diet tips if I get nausea. I’ve been trying to be prepared for any of the side effects, and your tips really help ease the anxiety whileI’m waiting to see if I get any of them. It helps to be prepared.

Dx 12/18/2017, IDC/IDC: Cribriform, Left, Stage IIA, Grade 2, 0/3 nodes, ER+, HER2-, Surgery 1/2/2018 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left Chemotherapy 2/11/2018 AC + T (Taxol) Hormonal Therapy 9/30/2018 Arimidex (anastrozole) Surgery 10/18/2018 Reconstruction (left): Tissue expander placement Hormonal Therapy 11/23/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/9/2019 Prophylactic mastectomy: Right; Reconstruction (right): Tissue expander placement Surgery 7/31/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 11/1/2019, DCIS/IDC, Left, Stage IV, metastasized to bone, 0/4 nodes, ER+, HER2- Targeted Therapy 11/2/2019 Ibrance (palbociclib) Hormonal Therapy 11/5/2019 Faslodex (fulvestrant) Radiation Therapy 11/18/2019 External: Bone Targeted Therapy
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Mar 1, 2020 03:06PM jobur wrote:

Pajim, Thank you for your kind words, they really do mean a lot. I'm guessing most of the people on this forum have been through much worse (you included), but this has definitely overturned my canoe on everyone's favorite river. You are so right about not being in the hospital. My mo is a sweetie and I don't think she was exactly threatening me, but she did mention while telling me to only eat clear broth that this is usually treated in the hospital. Needless to say I am being a very good girl regarding food intake.

IntoTheWoods, Thanks for your sympathy as well. It's not been fun, but could sure be a lot worse. Great to hear you are in such good hands, with a true team of pharmacist, internist, and mo (who actually talk to each!) working together on your behalf. I think it was well worth questioning them going straight to insulin, but seems like a very good answer.

Cure-ious, Thank you for your thoughtful and interesting post. I hope this will help those who are struggling with blood sugar rises. I find this interesting too, because without knowing there was such a thing, this describes my eating habits most days. (Not the keto part, just the fasting.)

an273, Dang, I knew I was going to miss someone! Belated welcome to the Piqray thread. If you get through this first cycle or two without major se's, I think you will find this drug a relatively easy tx. Is this your 1st time on Fas? Hope Piqray will be both easy & effective for you!

Brenniejoyce, A big welcome to you too! I'm sorry that Ibrance failed you and left you with pneumonitis besides. What did you take with it? Hoping Piqray will treat you better! Sounds like this is your first time on Faslodex, so do be aware it can have it's own se's even without Piqray. But it has been a wonderful drug for so many of us.

baywitch(Kathy), njgirl13, Bebecita Are you lurking? Still on Piqray? Hope you are doing well.

The unaimed arrow never misses. (From a Maui rules T shirt) What do you know, and what do you just believe?" Linda Hogan "Power" Surgery 6/30/2014 Lumpectomy; Lumpectomy (Left) Dx 8/1/2014, IDC, Left, 1cm, Stage IV, metastasized to bone, Grade 2, 4/7 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 8/4/2014 Arimidex (anastrozole) Hormonal Therapy 4/30/2015 Faslodex (fulvestrant) Targeted Therapy 8/16/2015 Ibrance (palbociclib) Dx 11/20/2018, IDC, 1cm, Stage IV, metastasized to liver, ER+/PR-, HER2- Hormonal Therapy 12/4/2018 Aromasin (exemestane) Targeted Therapy 1/1/2019 Afinitor (everolimus) Hormonal Therapy 7/15/2019 Faslodex (fulvestrant) Targeted Therapy 7/16/2019 Piqray (alpelisib) Targeted Therapy 1/11/2021 Nerlynx Chemotherapy 3/14/2021 Xeloda (capecitabine)
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Mar 1, 2020 10:01PM - edited Mar 2, 2020 06:03AM by Janice54

I have been on piqray now for ten days and I am doing great.....knock on wood. I watch my sugar intake.....basically none. So it has been testing 76. My fingers and toes are crossed hoping this continues. No....it WILL continue!

Dx 10/6/2006, IDC, 4cm, Stage IV, metastasized to bone/liver, Grade 1, mets, ER+, HER2-
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Mar 2, 2020 11:49PM jobur wrote:

Janice54- Nice to hear from you! So glad your glucose is staying low and you are not experiencing any bad se's. Love your determined attitude!

Pajim- How are you feeling? Is SOB the biggest irritation for you right now? Hope you are able to keep pain in check. Always rooting for you!

The unaimed arrow never misses. (From a Maui rules T shirt) What do you know, and what do you just believe?" Linda Hogan "Power" Surgery 6/30/2014 Lumpectomy; Lumpectomy (Left) Dx 8/1/2014, IDC, Left, 1cm, Stage IV, metastasized to bone, Grade 2, 4/7 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 8/4/2014 Arimidex (anastrozole) Hormonal Therapy 4/30/2015 Faslodex (fulvestrant) Targeted Therapy 8/16/2015 Ibrance (palbociclib) Dx 11/20/2018, IDC, 1cm, Stage IV, metastasized to liver, ER+/PR-, HER2- Hormonal Therapy 12/4/2018 Aromasin (exemestane) Targeted Therapy 1/1/2019 Afinitor (everolimus) Hormonal Therapy 7/15/2019 Faslodex (fulvestrant) Targeted Therapy 7/16/2019 Piqray (alpelisib) Targeted Therapy 1/11/2021 Nerlynx Chemotherapy 3/14/2021 Xeloda (capecitabine)
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Mar 3, 2020 08:08PM pots wrote:

Hi ladies,

I've been lurking but not posting much. I had a CT scan Feb 20 and bloodwork February 27. My CA15-3 continues to go down, at 92 now from 110 a month ago. I don't have the CT scan report yet but the MO looked at the images and thought there wasn't much change. This past month I had less nausea and diarrhea but more short episodes of a sore GI tract......feels like I swallowed razor blades and then it lifts. All manageable but odd. Faslodex SE for me are sharp muscle cramps in my legs.

One interesting question that the MO asked was about my emotions and moods...did I notice I was more depressed, irritable, less executive function, memory decline? For me the answer is yes....I figure the drug is affecting my brain based on what I've experienced. So she's looking into a dosage reduction. Any one else notice this? for me it got worse in cycle 5-6 on.

Jobur, goodness you are having a whole bouquet of ugliness going on. I had pancreatitis when I was on Ibrance and thought I was having a heart attack, sweats, nausea, unbelievable pain. I ended up having gallbladder removed. Please keep us posted.

Welcome newbies, this drug is doable once you get past the first 2 months so be patient. I was ready to quit once I got the rash and had terrible GI side effects....turns out those were all manageable after I took a quick break to let my system reset.

I have not had any blood sugar issues so far but I also watch what I eat, quantity and when I eat it. If I'm going to have high carbs like a cinnamon bun then I try to eat it earlier in the day, usually only get through half and make sure I get some walking done before/after. I don't do this very often. If I'm craving a treat then I look for no sugar options....Peaks Freans no sugar cookies, Russell Stover no sugar chocolates and I love Smart Sweets. Again, not a lot and never after 8 pm. And I drink a lot of plain water and carbonated water but nothing with sugar. I like good food and wine so it's about finding a balance.

Spring is slow to arrive here...the cherry blossoms might open if we get some sun this weekend!

Be wel

Dx 7/2013, Right, 3cm, Stage IIIB, Grade 2, 5/20 nodes, ER+/PR-, HER2- Dx 5/2017, Right, Stage IV, metastasized to other, ER+/PR-, HER2- Dx 3/2018, Right, Stage IV, metastasized to lungs/other Chemotherapy 9/20/2021 Other Chemotherapy 1/27/2022 Chemotherapy Taxol (paclitaxel) Targeted Therapy Ibrance (palbociclib) Chemotherapy Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)
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Mar 4, 2020 01:57AM ann273 wrote:

Thanks for the encouragement jobur! PIQRAY has been very easy on me and yes, this is the first time I'm on FASLODEX. I hope this keeps me stable for a few months atleast (since I have that stubborn FGFR1 mutation) because its just been so easy ( I hope it stays that way, Im cautiously optimistic ). Hopefully the Faslodex also has some effect, because I just developed the ESR1 mutation and Faslodex may just work at least for a bit.

Dx 8/1/2013, IDC, 5cm, Stage IIIC, Grade 2, 11/23 nodes, ER+/PR+, HER2- Chemotherapy 9/1/2013 Halaven (eribulin) Chemotherapy 11/15/2013 FAC Surgery 2/12/2014 Hormonal Therapy 4/30/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/3/2015, IDC, Stage IV, Grade 2, ER+/PR-, HER2- Targeted Therapy 6/1/2015 Afinitor (everolimus) Hormonal Therapy 6/1/2015 Aromasin (exemestane) Targeted Therapy 7/31/2018 Ibrance (palbociclib)
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Mar 6, 2020 09:27AM jben wrote:

Hello, my daughter is on Piqray and Faslopdex since November, had high sugar levels so is on Metformin too. She is still dealing with terrible side effects; Extreme Fatigue, leg pains, back pain (mostly from bone mets) stomach pain, no appetite, diarrhea, vomitting. She is only 29 and was very active but now doesn't have energy to even go for a walk. The only reason she doesn't want to stop, is her tumor markers have gone way down, she will have a PET scan in April.

Do any of you have any suggestions to help with any of these side effects, maybe some supplements? She takes a Claritin everyday to help with leg pain, per doctor, seemed to help some but not much. Not sure which meds are causing some of these symptoms.

This is breaking my heart.

Thanks.


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Mar 6, 2020 10:12AM pajim wrote:

Hi Jben, The best thing to help with all the SEs would be to go for a dose reduction. As it sounds like the med is working, a little less of it should still work. It can be [psychologically] hard to take less, but truth be told the doses of cancer meds are always the "highest dose tolerated" not the "minimally effective dose". I've taken 75% of the dose of a lot of meds in my time. Makes life better and so far as I know still works fine.

Has she discussed all this with her docs? She needs to emphasize that this is ruining her quality of life. They should work with her to find a way to take the drug.

In the meantime she could try Zyrtec rather than Claritin, and take pain meds. Keep on top of the pain. Have the docs provided Zofran for the nausea/vomiting?

One other idea is to ask for steroids. Dexamethasone. Low dose might boost her a little.

Dx 4/20/2008, IDC, Right, 4cm, Stage IIIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Dx 2/1/2013, IDC, Stage IV, metastasized to bone, mets, ER+/PR+, HER2- Hormonal Therapy 2/26/2013 Femara (letrozole) Hormonal Therapy 4/21/2013 Faslodex (fulvestrant) Targeted Therapy 2/24/2016 Ibrance (palbociclib) Chemotherapy 6/18/2017 Xeloda (capecitabine) Targeted Therapy 8/14/2018 Verzenio Chemotherapy 1/1/2019 Halaven (eribulin) Chemotherapy 12/29/2019 CMF
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Mar 6, 2020 10:18AM wmukluk wrote:

I was on Faslodex with good results (no progression) for almost 5 years. It stopped working in 2016 and I have been on all kinds of treatments since then, including 5 or 6 different chemos (I am running out of options). After genomic sequencing on my bloodwork and a PET scan which revealed some progression (fluid in my pleura), my onco wants me to go back on Faslodex with Piqray. Has anyone been in this situation, where they have gone back to Faslodex? I had few side effects (aside from hot flashes) but I am so much thinner now that I know those shots are not going to be fun. If they work, however, I will grin and bear it. Thanks in advance for info and suppport

Dx 7/9/2008, ILC, Left, 2cm, Stage IV, metastasized to other, Grade 1, 0/15 nodes, ER+/PR+, HER2- Chemotherapy 9/4/2008 Taxotere (docetaxel) Hormonal Therapy 10/31/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 6/30/2009 Aromasin (exemestane) Hormonal Therapy 1/31/2011 Faslodex (fulvestrant) Targeted Therapy 3/1/2016 Ibrance (palbociclib) Chemotherapy 11/30/2016 Xeloda (capecitabine) Targeted Therapy 10/31/2017 Afinitor (everolimus) Chemotherapy 1/31/2018 Halaven (eribulin) Chemotherapy 8/31/2018 Taxol (paclitaxel) Chemotherapy 1/31/2019 Doxil (doxorubicin) Chemotherapy 5/20/2019 Gemzar (gemcitabine) Chemotherapy 8/19/2019 Navelbine (vinorelbine) Chemotherapy 11/3/2019 Ellence (epirubicin)

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