Piqray users, what is your experience?
Comments
-
My MO had ordered TM test (CA 15.3) after 4 weeks of being on Piqray and the numbers were higher than when I first started. Then she ordered a PET scan at 6 weeks, which showed decreased SUV uptake in my bone mets and unchanged in my liver mets.
At 8 weeks, another TM test was done and this time the numbers are higher than the first month. Don't know what is happening. I remember someone else had a similar case, where in the TM numbers did not correlate with the scans.
Previously, my TM numbers went up only with liver mets so I am getting a little concerned.
0 -
S3k5
Sending you positive thoughts. I do hate this roller coaster ride we are all involuntarily strapped into.
Sending thoughts to others leaving Piqray as well.
I am so exhausted with the pain around the beautiful pacific northwest and our country. As I look out my window at smoke filled skies, l wish for the day we learn to care for each other and our planet a little better.
Peace to all
Mary
0 -
My original biopsy from (1/18) came back positive for Pi3k mutation after progressionof Ibrance. I will begin Piqray and Faslodex. I’m meeting with my MO next week. I’m wondering about SE. Do most people start taking an antihistamine before piqray? Will my MO give me something to test blood sugars? Mouthwash for sores? I’m wondering if all this is usually set up before starting?
thank you all for sharing your experience with piqray! I’m learning lots😊0 -
JFL, I just read that you are having issues right now and your MO told your DH you are running out of options. WTF? I am very worried.
Did your last F1 report indicate that you have high mutational burden that Keytruda could help you? I just can't believe that you are runniing out of options. Are you not eligible for trials with CK7 inhibitor and even neratinid (sp)?
0 -
Anewbreath
I started antihistamine when I started Piqray and so far no rash. I have been lucky no mouth sores but was not treated ahead of time. (I did with Afinitor) My MO is checking blood sugars at each visit I was seen weekly, then every other week now monthly when I started Piqray. And I have managed blood sugars with a low carb diet. Right now they are staying at about 120 per last A1C. I was seen so frequently when I started Piqray because I was very ill when I started, and since then things are turning around. Good luck to you on this med
Mary
Good wishes to you jfl let us know how you are doing
0 -
Anewbreath,
I'm not on Piqray yet -- it's on my list of possibles -- but my MO told me that all of her Piqray patients are on antihistamines to avoid rash. As well, they are all on metformin to temper the blood sugar rise. Just to give you an idea of what she's doing...
JFL, thinking of you.
0 -
03-16-2011, I sent you a private message.
0 -
Ladies, I need some advice. I'm supposed to start Piqray this week, and I also desperately need to drive out-of-state to see my newly-widowed mother for her 83rd birthday. Because of Covid times, I haven't seen her since February and she is in deep grief. This is her first birthday since my father died.
So my question is... how many doses did you take before side effects became troublesome?
If I drive there on Tuesday and come back on Thursday (7 hours each way), would I be okay to take my first dose on Wednesday?
Yuck to planning life around side effects. Gross. But here we are.
0 -
lulubee, yes you will be fine. GO and see your Mom. I am in a very similar situation, except my 81 yr old Mom is in CA and I am on the east coast. So it will be a cross country flight. But if I could drive and see my mom, I'd go ahead.
I started Piqray two months ago. The first side effect started one week after my start date (rashes on my legs and arms). I took extra doses of Benedryl and Allegra, and they went away. High blood sugar is another common side effect for which I take Metformin.
Since everyone is different, my advice to you - be prepared for the common side effects: e.g. take some antihistamine, over the counter Cortizone cream (just in case rashes appear), have some imodium with you in case you have diarrhea, and Dramamine for nausea due to the car ride (stomach gets sensitive with Piqray). Drink plenty of water once you get there and once you reach home.
Most likely you'll be fine during the first week. Even if you do start seeing some side effects, they are completely manageable.
I have been taking Piqray at night after dinner so that I don't have queasy stomach during the day time when I am working. Please keep us posted about how you do on Piqray. Do you have someone to go with you?
0 -
S3K5, oh my stars, thank you so much. That is very helpful information!
I've been on Verzenio for 18 months so I have allllll the things for these particular side effects. Well, except for cortisone cream. Verzenio side effects hit pretty predictably on day 6, so this sounds similar.
I really hope you get to go see your mom soon. This is the longest I've ever gone without seeing my mother and my autistic brother, and unfortunately lockdown came soon after my father's death so we've all been grieving apart. So hard.
I will be driving alone this time but I've done this trip alone several times in the past. I actually love a good solo road trip every now and then.
I'll keep you posted! Thanks again.
0 -
lulubee, SE may not show up for 2 weeks. I would start antihistamine with your first dose of Piqray and take all the stuff with you just in case. We did a road trip last year this time when I had just started and everything was fine, I actually had energy too
Take your time and enjoy your time with yourmom
0 -
Thank you, Pots!
0 -
Sadly, my time with Piqray will be short. I have been on it just over a month and in that time developed ascites quite rapidly and my alkaline phosphatase continues to rise. I am moving on to oral cyclophosphamide in a few days. I will also try to get Enhertu for HER2-low approved but that could take a while and is not guaranteed. Not sure that is possible but my MO has agreed to try.
0 -
I came her to check on you, JFL. Damn, I’m sorry to hear about the ascites and continued rise in ALK-P. So, ok, let’s hit the cancer with a chemo it did not expect! I sure hope they can fast-track approval for the Enhertu. Can you or someone else keep tabs on this (Phone calls etc.) to keep it moving through the system without delay? Thinking of you often.
0 -
Thanks, Shetland. Although I have major ascites that is growing daily - now look 4-5 months pregnant - and continued jump in my alkaline phosphatase, my bilirubin actually went down from last week and is near normal. One of my liver enzymes went down as well, while the other went up. One tumor marker jumped up while the other jumped down. I am all over the place but the two most pressing concerns - ascites and alkaline phosphatase are pretty bad.
I also hope that Enhertu is approved quickly for HER2-low. Regardless, there are laws requiring insurance companies to approve off label uses of cancer medications if certain conditions are met - primarily, one doesn't qualify to take the drug in a trial and at least 3 reputable, peer-reviewed medical journals have published safety/efficacy data on the off-label use for which one is seeking insurance approval. I was able to get Ibrance/Faslodex/Aromasin approved under this law back in 2015, in advance of when Ibrance was FDA approved for use with Faslodex. Given that Enhertu is approved for HER2+ already, certain safety/efficacy data for use in HER2 low has been published in multiple reputable, peer reviewed medical journals, and I don't qualify for Enhertu in the DESTINY-04 HER2 low trial because I have exceeded the permitted number of chemo used, I do have a shot at getting it now. Hoping my amazing liver can hold on until then.
0 -
JFL, we're your cheerleading squad. Please keep us posted here. Holding out big hopes that you'll have a nice turnaround on cyclophosphamide with or without Enhertu. I've had LFT's hit the roof before and then fall pretty quickly with meds, and I'm praying that is about to happen for you.
Onward.
0 -
Oh, of course, JFL you are the one who explained this about drug approval to me before, and I put it in my notes. You’re on it.
I think lulubee has had some pretty wild twists on the roller coaster herself. Courage, my friend! Hoping, hoping.
0 -
Hello all. Leaving the Xeloda thread and joining this one. MO is switching my tx to Piqray+Faslodex as soon as insurance approves. I've already gotten good information here on what to expect, and I thank you all.
JFL, hoping the ascites are brought under control for you soon. Hang in there. Reaching out with a big virtual hug.
0 -
Bliss,
I'm not on Piqray yet, but might be heading there in a bit.
Have you asked your MO about doing a biopsy on your lung mets (I read on the other thread that that's where your doc thinks there is progression)? I assume you've been tested for Piqray or you wouldn't be going on it, but a genomic test might provide more helpful information and reveal other treatment choices.
Just a suggestion.
0 -
BevJen, thanks. I think the suspected lung mets are too small to biopsy, but MO did send my liver biopsy in May for F1 testing and the PIK3 mutation was reported. She wanted to try Xeloda first, but told me if it failed, Piqray would be the next step. Since these lung nodules have appeared, she's assuming Xeloda failed and since it didn't do much for my liver mets, but keep them stable.
0 -
Bliss welcome to the Piqray club. I hope it serves you well with manageable SE.
Lulubee I hope you are able to see your mother soon.
I have a new SE I was not expecting. I have developed hand and foot syndrome. I had this with xeloda, so I recognized it. I have steroids cream and it's helping significantly. I was glad not to have a Piqray dose reduction, because last dose reduction I had a big tumor markers jump. I did have a 40 point tumor markers Ca 27 jump this month. My MO thinks that could still be stable but getting pet scan this month.
Wondering how higher blood sugar levels effect PET scans?
Peace to all
Mary
0 -
Hello Ladies,
I am new to this group, but certainly not not new to breast cancer. I would like to know the side effects of Piqray. I just stared Fulvestrant shots, having my 3rd tomorrow.
Please let me know how you are all managing the side effects. They seem brutal. Stay well.
Judysue
0 -
Mary, thank you for the welcome. Sorry to hear you're having H/F syndrome! I had it with Xeloda, too, not fun, but glad you caught it. I haven't read that's an SE of Piqray, odd, but now we know to look for that, too.
Judysue, I'm new to this tx, too. Will start Piqray once insurance approves, but may get 1st Fulvestrant shot next week. Do you tolerate those well? When do you start Piqray? MO told me her patients on this drug are mostly experiencing diarrhea and nausea, of course, along with skin rashes and increased glucose levels. Hoping to avoid the latter two SEs.
0 -
Hi Bliss58
So far I have experienced csome tiredness and a bit of depression as well as a slight neuropathy in feet bottom
but nothing too concerning. I 'm most concerned about piqray. l will keep all posted if I decide to take it.
Judy sue
0 -
To those who have or had skin rashes. Do you have drug or food allergies? My mother and sister have always had sensitive skin and allergies, but I never have and I'm not allergic to anything so hoping maybe I won't be afflicted with rashes.
0 -
Hello All,
I wanted to share my experience with piqray. I was previously on letrozole and ibrance which worked well for me for 2 years and 3 months. Progression started this past February and I started fulvestrant injections in March. Due to various complications, (ie vertebroplasty to L4 because of mets fracture) and insurance hiccups I only just started piqray September 15. Piqray hit me hard with lots of nausea (zofran not really working), stomachache, fatigue and that awful metallic taste in the mouth. The SEs started after the first dose. Day 14 of the drug I woke up with a rash on my back and thighs, which gradually progressed to my face and chest. I also had inflammation of the mouth. My MO told me to take Zrytec and pepcid which helped get rid of the rash in 2 days but the mouth sores and the bad taste in the mouth are still lingering. I stopped taking the medication when the rash appeared and I'm happy to say that the nausea and stomachache have gone away. Fatigue is still there as the blood work is showing low RBC counts. Blood glucose is good but I am adhering to a keto diet. I spoke with Novartis earlier today regarding the SEs and was curious to see if they had any data on the lower dose but they instructed me to have my MO speak to their medical personnel. So curious to see if anyone on this forum is taking a lower dose without any progression or less SEs. I have scheduled appointments with my MO and second MO from MGH this month, but I am doubtful I'll go back on it as the SEs were extremely debiliating. Missing the ibrance days when fatigue was the only SE!
0 -
Hi ginmill and bliss plus any other Piqray newbies,
The skin rash seems to be a universally common SE around day 14. I had to stop taking the drug for a week and then restarted back on it along with a Claritin daily. I also used some hydrocortisone cream to help relieve the itch. On restart the rash wanted to come back but stopped once I also took a Benadryl and hasn’t been seen since.
The challenge with lowering the dose from 300 mg is that there isn’t a lot evidence regarding the impact on effectiveness. I stayed at 300 mg for 9 months until my blood sugars shot up even with Metformin. I’m in the BYLIEVE clinical trial so trial allows us to reduce dose to 250 mg and then once more to 200mg. I’m on 250mg now (in cycle 14) and the SE are much more manageable. My MO is going to recommend to Novartis that the standard dose be lowered from 300 mg to 250mg based on what she’s seen with her patients. Our thinking was to maximize the time on the highest dose for as long as I could stand it to get the max effectiveness and then contemplate a change.
Yes my taste buds have changed yes I still alternate between diarrhea and constipation but I don’t have nearly the fatigue that I had previously. I have more energy these days.
Be well
0 -
Welcome to the Piqray newbies. Good luck! Re: SEs. My wife has been on Piqray for almost 5 months. The SEs during first 4 weeks or so we're pretty rough: high blood sugar, really bad rashes (she normally doesn't really have food or drug allergies), changes in taste (which is ongoing), terrible itching (also ongoing but reduced), and horrible mouth sores. She was pretty miserably but thankfully they generally subsided after the first month and are now manageable for her.
She's on 1000mg of Metforim and has trouble tolerating higher doses than that. She's been able to reasonably control her blood sugar by controlling her carb intact along with the Metforim. She has noticed that, for her at least, increasing her fiber consumption along with minimizing her carbs help control her blood sugar. Her fasting blood sugar is regularly in the 120 to 140 range which her endocrinologist is satisfied with.
Yesterday was her first scan since being on Piqray. We'll get the results next week. No one other than other MBC patients and their families really understand the stress these scans cause. Fingers crossed that Piqray is working for her!!!
0 -
BLMike,
Thinking good thoughts about your wife's scans. Fingers crossed that piqray is doing its job.
This is one of the drugs that my MO has her eye on for me. Is your wife seeing an endocrinologist as well? Just wondering how much management is necessary with this drug.
0 -
BLMike, thank you for sharing your wife's experiences especially about no food or drug allergies. Having none of those myself, I hoped to not have skin rashes, but appears that won't be the case. Fingers crossed Piqray is working and she gets fabulous scan results!
0
