Piqray users, what is your experience?
Comments
-
This week I had my first scan since starting Piqray and IT'S WORKING! The suspected bone met disappeared and everything else has shrunk. I'm still waiting for the PET report to post online so I can read the exact details but YAY!
But....unfortunately, my pleural effusion is still going strong. After my latest draining session on Wednesday, they said there was an air bubble around the top of my lung (I don't remember the medical term) and decided to keep me in the hospital overnight. It was my first inpatient experience since being born. Still hoping it will resolve on its own without needing a drainage tube...
-
Parakeetsrule,
Congrats on your scans and I'm so happy that the piqray is working for you!
-
Parakeetsrule:
So glad to hear that Piqray is working for you.😀
How are the side effects as that will be my next line? I will soon be having Y90 but currently on Ibrance & will be changing to Piqray soon. So many changes.😞 -
Side effects range from nothing to severe. It really depends on each person. If you do experience any, they are usually manageable though. The most common ones are high blood sugar, diarrhea, skin rashes, and mouth sores.
-
Thanks for your reply. Hoping this drug is easier than Ibrance. Probably wishful thinking. Main problem for me is fatigue. I will make sure I’m stocked up on meds to combat some of these side effects. Just in case
-
hi everyone
I’m new to Piqray-I’m just shy of 9 years with mbc I had primarily bone tumors with a large progression to my abdomen last year. I’ve been on Piqray for almost 2 months and so far my glucose has shot up but is being controlled by metformin and had a whole body rash for a week which resolved with steroids and antihistamines. Besides that I feel pretty good-definitely not as good as I did on xeloda but not as bad as I thought I would either. I’m hoping my scans are stable in may. Hope you all are having a nice weekend!
Kristi
-
Welcome! This thread is not very active but there are some of us Piqray people lurking about. It seems like a pretty boring (in a good way) drug for most people, with not much new going on once we get settled into it.
My first scan three months in showed a really good response so I hope it works quickly for you too! -
hi parakeetsrule!
Thanks for responding I’ve noticed it’s not the most active thread but maybe we can keep it going. I’m hoping for the same response on my scan. I’ve felt a response my abdomen which has been very distended has shrunk a lot but that could be attributed to the 18lb weight loss I’ve had in the last month as well. I’ll let you know how my tm’s are I get them checked this week.
Kristin
-
How did it go, partyoffive?
-
Hi what is the name of the Piqray facebook support group? I am stage iv and just started piqray after I was found to have the mutation.
Thanks
Sandy
-
Hi
new here on the thread.
I will be starting Piqray soon hopefully within 2 wks. I was on Kisqali and then verzenio both had progression (bones and new liver spots) after a very short time (6wks) my onc tested for gene mutations (at my request - yes I'm pissed about having to ask, she dropped the ball on that) and I have PIK3 and MTOR or something mutation.
I am very excited to start this drug. All I want is to reman on one drug for 3 months and see if it is truly working. I was dx w/ stage IV Oct 2021 and ever since I've had colectomy, ovaries out, kyphoplasty, low ANC, 3 rounds of scans, high ALK PHOS, increased tumor markers and now I'm in the process of switching ONC because of her short comings.
Stability is what I crave I'm an accountant for pete's sake!
Hello everyone!
tigre
-
hi el Tigre
I was on 300/mg of Piqray for about two months-I did get a bad rash and my glucose elevated and I was put on metformin. Rash lasted about 2 weeks then resolved I started my 2nd month and felt like I got hit by a truck. My onc took me off of it a couple weeks ago to give me a break but I’m starting back up at a lower dose this week. I think if you are prepared for some of the side effects it could be a great med. i was so spoiled by my last meds and had no side effects and I didn’t start an antihistamine until I got the rash so stay in front of it. Good luck and let me know how it goes.
Kristin
-
Thank you Kristin!
-
Here's the group: https://www.facebook.com/groups/1699418116870066/ Be aware that this group includes people with other types of cancer, and men. It's not specifically a breast cancer group for women. Not a bad thing, but something to keep in mind when you seeing posts! I once got into it with a man there who didn't understand how breast cancer worked. 🙄
And welcome! I've been on Piqray since December and it's been pretty good so far. Let me know if you have any questions!
-
Parakeeets,
Are you still doing okay on piqray? How long have you been on it? I am probably about to make a treatment change, and this one is on the table. I've not heard great things, and I'm not on Facebook (and as you know, there's not much info on BCO about this drug). So I thought I'd reach out to see what you had to say about issues, etc.
FYI, I did a consult recently at Memorial Sloan Kettering in NYC and the doc there said they are about to start up a new clinical trial for a new drug that's Piqray-like but without the side effects. She didn't elaborate, but did say that it would most likely only be a MSK trial.
-
Hi Bevjen,
Don’t let Piqray’s potential side effects put you off. As with all of our treatments, some people get the short-stick and experience bad SEs but for others, it’s a breeze. The Facebook group that was linked above is a great wealth of information but feel free to ask questions here instead.
I’ve been on Piqray with fulvestrant since December 2021. I feel I’ve had a very easy time with it so far. I switched to a low-carb diet right from the start and I believe it helped me weather the blood sugar issues many people experience. My blood sugar has increased slowly over the months but not alarmingly so. I started taking 500 mg metformin with breakfast a few months ago and then added another 500 mg at dinner last month. This, along with a low-carb diet and regular exercise is working very well and keeping my blood sugar stable.
I haven’t experienced a rash yet but a lot of people do. As recommended on the Facebook group, I started taking an antihistamine a week before starting Piqray (1 12-hour pill twice a day). I have since cut that back to 1 pill a day.
Diarrhea is another common SE. Anti-diarrhea meds didn’t really do much for me unless I took huge quantities so I took Metamucil once a day after dinner and it kept me regular until my body adjusted to Piqray. After about a month, my body adjusted. Metformin can also cause GI issues
Nausea can be another issue but I didn’t experience a lot of that. I had some indigestion off and on for about the first month and then things settled down.
Some people experience weight loss. Much of this seems to be related to not feeling like eating or food not tasting good anymore. I’ve lost about 5 lbs so far but that could be related to exercise more than the meds. There are times when I don’t feel like eating my normal amounts. When that happens, I make sure I eat some good fats so I keep my calories up (olive oil, almonds, full-fat plain Greek yogurt, etc).
I hope this helps. Cheers!
-
Hi! I'm still on it and coming up on my six month scan in a couple weeks. Still doing well with side effects. I had more in the beginning but now it's just occasional diarrhea and a new fun one: thinning hair! It's nice not having to shave my legs all the time though. Ha. For awhile I thought it was causing terrible fatigue but then I brought home two foster dogs and started going for regular daily walks, and the fatigue is going away! So weird how not exercising can make you so tired.
I still haven't had blood sugar problems or the rash. No sign of mouth sores since the winter either. I hope it keeps working for a long time because I feel pretty good. I'm still one of the healthiest people in my family. Lol.
I was just looking at the Piqray trial information today and it said only 25% of people stopped Piqray because of the side effects. So don't worry about it! There's an excellent chance you'll have only minimal or treatable side effects. And even if you do have bad ones, you can always stop it and then you'll know it's not a good option for you. -
The Facebook group has a document that may answer many of your questions if you decide to take Piqray. I can download it for you if you want. -
parakeets rule,
that's awfully kind of you to offer to download the document. I am not sure what my doc will decide on my next treatment. She is very high on enhertu, but for a variety of reasons, I may not be able to go onto that right now. My other option that we've discussed repeatedly is piqray, so I am just trying to do some research on it before we move that way. The nurses at my infusion center did NOT have nice things to say about the drug, so it's good to hear that you've done okay on it.
I'll be back in touch if we are heading piqray way. Thanks so much for your help.
BevJen
-
Been on Piqray for 13 days now. I take a Benadryl at night and have not had any bad SE yet. I feel better on this medication then on Kisqali and Verzenio. I hope this med works for me.
FB group for piqray has alot of info on this medication and the SE as well.
tigre
-
tigre,
Thanks for the information. Just had a Telehealth with my doc and it looks like I'm headed to enhertu. She is going to completely bypass piqray for now.
-
My oncologist is thinking of Piqray for me, as he hasn't gotten approval from my insurance for Enhertu. (I'm Her-2 low, and FDA has not yet approved this for us.) He is on working on a third appeal, but I don't see much reason for hope.
Parakeetsrule, you mentioned a document from the Piqray Facebook group. How would I find that?
thank you, everyone here, posting their experiences. It helps so much when being asked to place one's faith in a new medication, after all the failures.
-
If you join the group you'll have access to the file: Piqray and those with PIK3 mutations support group
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team