Piqray users, what is your experience?

Parakeetsrule,

Congrats on your scans and I'm so happy that the piqray is working for you!

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.

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

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

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 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

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!

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!

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

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.