Piqray users, what is your experience?
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Stilllivin, I am sorry Piqray did not work for you. I just failed a parb inhibitor previous to Piqray.
S3K5 I hope your scan goes well. My tumor markers are going up and down. Initially they had a big dip, then due to stomach cramping I was on a three day break and a three day dose reduction and tumor markers jumped right back up. Now they are down again after steady 300mg dosing for a month. I could take a two week cycle off xeloda with out such big TM changes
Good luck to all on this med. Still working to keep to 50 carbs a day to keep sugars low. A1C 5.8 but up from 5.4 in June.
Peace
Mary
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3-16-2011 (Mary), thanks for the info on tumor markers. Maybe my MO tested my TM very early in the treatment (5 weeks).
My PET/CT report from last week's scan shows improvement in my bone mets and stable liver mets. The SUV numbers are lower than before I started on this treatment plan 6 weeks ago (Piqray). Initially the tumor markers had jumped which led to a PET scan. With all other chemo regimens, the best response I ever had was 'stable' but this is the first treatment wherein the tumor activity is actually lower in the bone mets. I am so glad this targeted treatment is working !
I will continue on Piqray for 6 more weeks and then do another MRI. I am hoping this drug will work equally well on my liver mets too. Agreed, it is probably too early and maybe the liver mets will eventually start regressing and my tumor markers will start coming down.
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Hello, I just finished reading all the posts on this thread. What an amazing amount of helpful information. I am joining you with Piqray .I am heavily pretreated with bone and liver mets the past eight years. Most recently, 25 months on Verzenio. Scan results today show that liver mets are stable, but entire spine has bone mets , and a line of affected lymph nodes extends from upper chest to belly. Hard day, but doing okay. Biopsy next week to see if tumor status has changed.
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Looks like I am finally joining the Piqray squad also, after 18 months on Verzenio. (Hi SchnauzerMom!) My tumor markers (which have been spot-on accurate for 13 years) have gradually crept up a bit each month for the past year, though all my scans remain pretty unremarkable. They jumped 50 points in the past three weeks so it feels like time to jump the V ship before I get in trouble. This is my pattern-- creep a while, then the big jump, and next thing you know I'm in ER with something freaky.
The wild card is that I am a lobular gal so we can't entirely trust things to show on scans until there's a whole bunch of it. All my progressions beyond bone have been in really bizarre, unexpected places.
I got the A1C test yesterday plus Zometa + Faslodex so today I'm 106 years old. Start a 2 week wash-out of V today (good riddance!), and yet another nuclear bone scan tomorrow... ugh, my poor achy bones. Are we having fun yet?
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HI Lulubee, How are you feeling? I"Ve been really unwell the past four or five weeks--thought it was a virus or cumulative effects of the Verzenio. NO. it's the cancer,my oncologist said. I'm lobular, too.
Had the Faslodex shots yesterday. Sore butt, sore bones. (I liked your comment about being 106. Does feel that way.) Took first Piiqray yesterday Had been off verzenio for two weeks because of low blood counts. Good luck. I'll be eager to hear how you're doing.
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SchnauzerMom and lulubee,welcome to the club. There is a lot of information about how to cope with the side effects (if any) if you scroll to the early part of this forum.
Personally, I had high blood sugar and rashes after about 3 weeks of taking Piqray. Maybe you will be lucky and you won't get any side effects!
Please post your experiences here and may this treatment work for both of you. Hopefully, you shouldn't have to worry about any copay since Novartis is really good about taking care of this.
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Welcome to Schnauzer mom and lulu bee,
I wish you good luck with this treatment. For me it has been easier than Verzinio. Please keep us updated on how it works for you.
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I have a question about Piqary. I have progression after 2 years of Ibrance and Femera. My MO is using my original biopsy samples to test for Pi3k mutation. This was a sample from January of 18 same location my liver mets show progression now. They didn’t test for pi3k at that time. Is this something that would have showed up at that time, if it’s present now? Anyone heard of this? thoughts appreciated.
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Anewbreath I am not an expert in biomarkers. It seems like your sample was never tested for any genetic mutation? Did they do a genetic test for the presence of inherited genes rather than a complete genomic profiling?
I had a biopsy in 2013 to confirm the bone mets. This was tested for BRACA gene in 2014. When I was diagnosed with liver mets, the same sample was used to do the genomic profiling and that's how I know that it was positive for PIK3 mutation.
Hope this helps.
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S3K5 - you are right, no genetic testing. When I was diagnosed in 08 - I tested for Basic hormones, her2 And genetic - no BRCA found. In 2018 they tested to make sure I was the same cancer as before and no other testing for mutations. I have samples Left from my 2018 biopsy and they Have sent one in for pi3k testing to see if I will start piqary. I guess they are thinking it was already present.
Were you diagnosed with liver mets after your 2013 biopsy? If so, did they use that sample for pi3k testing? Not a new biopsy? Sorry for all the questions. Thank you for your help.
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S3K5 and 3-16-2011,
Thank you for your welcome and good wishes. Truly appreciated! 3-16-2011, it's encouraging to hear that it's been easier than Verzenio for you. I'm a little concerned about the glucose risk. Any recommendations from your experiences? (Just woke up from from a 2 hour nap. It was wonderful . Yesterday was draining, so probably needed it.) Do you have fatigue with Piqray?
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Schnauzer mom -- Welcome. My wife has been on Piqray for over 3 months. She's struggled with blood sugar on piqray, and has gone from 500mg metformim to 1000mg. She has trouble tolerating metforim doses greater than that so she's been forced to further control her blood sugar via diet. This has required a lot of trial and error. She recently met with a nutritionist (which helped a lot) and is religiously counting carbs. As 3-16-2011 mentioned above, limiting carbs can make a real difference in blood sugar. Good luck!
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BLMike,
On another thread I have been discussing this with Cure-ious because my MO wants me on Piqray after my Ibrance run (which may be coming to an end.) One of the things that Cure-ious suggested was that intermittent fasting of 12-14 hours in the evening may help with the blood sugar issue a bit -- if I recall correctly.. My MO and I discussed this drug when we met this past week. She said that of the patients she currently has on Piqray, all but one have seen a blood sugar rise, so I think it goes with the territory.
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Thanks BevJen. Sorry to hear your Ibrance run may be coming to end (just as my wife's did). Piqray has been more challenging for my wife than Ibrance was.
My wife has been fasting from about 8:00pm to 12:00PM so that's about 16 hours each day. I wonder if we should move that back to a little earlier in the evening? Hmmm. Definitely something worth considering. Thanks. The more she cuts carbs, the lower her blood sugar. That's for sure. We're checking her BS twice a day and her evening BS is pretty good, but her morning one still remains a bit too high. This is definitely a struggle with piqray. She has her first post-piqray scan next month. I sure hope this stuff is working! Fingers crossed.
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Mike,
Just curious -- how long was your wife on Ibrance? I'm just at 13 months now. I was hoping for a bit more time. We'll see.
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BevJen - my wife was on Ibrance about 9 months. The first scan showed the possibility of some improvement, the second showed the possibility of slight growth, and the last showed unquestioned growth so we went with Plan B Good luck if you end up here: lots of womenhave done well on Piqray
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Anewbreath , I had a biopsy to confirm the bone mets in 2013. Same sample was used to do a genomic profile to check for PIK3 mutation, I was diagnosed with liver mets in Jan2019, hence the mutation check.
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SchnauzerMom, I too have extreme fatigue with Piqray. It could also be due to low carbohydrate diet.
My endocrinologist said that keeping my blood glucose around 200 fasting is okay and that I need not try to bring it down to 100. Has anyone else gotten the same advice? I am a vegetarian, so keeping the carbs low is a challenge. I cannot tolerate a lot of foods due to stomach ulcer. I take Piqray after dinner and my fasting glucose is always higher than 150 (after 12 hrs).
BevJen and anyone starting on Piqray, based on my experience, the first month will be an adjustment time with the diet, constant blood checks, etc. I have been on this for 7 weeks now and it is getting a lot easier. I find Piqray easier than Verzenio (I was on Verzenio only for 3 months).
I have a continuous blood sugar monitoring device, which is easier than pricking the finger tips twice a day. This was covered by the insurance.
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I have been on Piqray for nearly 3 weeks and am having the most challenges with constipation. Does anyone else have that side effect?! I know Piqray is notorious for diarrhea but was surprised to have the opposite issue. I have had some mild diarrhea cycled in with the constipation the only part that is problematic and uncomfortable is the diarrhea. I also have indigestion/ acid reflux and premature fullness, although some of the fullness is likely due to the mets themselves. I haven’t had any rashes or blood sugar issues yet but am already on high dose metformin and Zyrtec for other reasons.
BevJen, sorry to hear your Ibrance run is coming to an end.
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S3K5 -- My wife worked hard to get her fasting blood glucose down to around 160, but her GP and MO both wanted it below that. She's further reduced her carbs and has gotten it down to the 140 range. She has her first endocrinologist appointment on Monday so it'll be interesting to see her view of a target level.
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I am just catching up with all these Piqray posts, and want to contribute a little too. I have been on Fulvestrant, Prolia and Piqray (300 mg) now for 15 weeks. I had: hyperglycemia from day 2 now treated with Insulin and low carbohydrate diet only (unable to tolerate Metformin), still have mild loose stools, xerostoma, no taste or appetite, and a small leg rash. I am de nova Lobular, Stage IV E+, P+, HER- and multiple bone mets. I had RT to my sacrum and hips for pain and bone progression when ribociclib and Letrozole stopped working. My tumor markers CEA and 27.29 were predictive before CT confirmation. Toughing it out with all the SE on Piqray seem to have been worth it. My tumor markers dropped dramatically initially (first 2 months from peak 27.29 of 275) but then 27.29 slowed down to a small drop in month 3. Now my breast mass is nearly gone, the CEA is normal, my PET/CT- FDG is NED (sclerosis only) but the 27.29 is a little bit higher in month 4 up to 162 from 123 in month 3.
It is unclear what the 27.29 means now, so my MO will just repeat it and see where it is going and what it means.
It is encouraging to have a PET/CT-FDG that changed so remarkably in 4.5 months after all the SEs and difficulties. I did not have RT to all the skeletal mets and they also are gone. So, if you can all persevere, I know how difficult this is, there may be a light at the end of the tunnel.
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Joynpeace, thank you for adding your experience with Piqray. It is always good to hear positive news.
My CA 15.9 tumor marker increased after 6 weeks on Piqray but the PET scan showed that all my bone mets had lower FDG uptake and CT of my liver showed the tumors had become slightly smaller. Now I am thinking that maybe Piqray does something to the tumor markers and is definitely not an indication that the drug is not working.
I wonder how many others saw the same thing - i.e. increase in tumor markers but decrease in the tumor activity?
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Joynpeace, thanks for providing your history with Piqray. Glad it is working for you! It seems like there are disconnects between Piqray working and tumor markers going up or downbased on various historical posts from different people on this thread. It seems to be somewhat unpredictable. Sometimes tumor marker decreases / increases align with whether Piqray is working for one person and other times it does not align for that same person. I haven’t been on it long enough myself to have any personal experience to share yet.
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just had to stop Piqray and have been on for 1 year.
Unsure what’s next. Scared.
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Catwood, sorry to hear you had to stop Piqray. Was it due to side effects or progression. A year is a good run although no run is ever long enough. Thinking of you. It is scary when one doesn't know what is next. I always have a plan or a few options for my next treatment. I have no idea what is next after Piqray. My MO actually said to my DH today that I don't really have treatment options left. I may not be able to wait round to see if PIqray is working. My liver is having some issues right now, likely some sort of blockage.
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Thanks JFL and S3K5 for your responses. I will just hang in there and see what happens with my follow up PET/CT FDG in 3 months and monthly TM. I will post a follow up.
Catwood and JFL I am sorry to hear you are off Piqray and you are not sure what's next. That's very stressful. I hope there is a targeted Rx that will be another option.
Keeping fingers crossed for you both!
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JFL, I'm just a year behind you (2007 dx) and I'm also counting my remaining options on just a few fingers now. You have really been through the ringer with that long history of TX. It's just a lot, isn't it? Sometimes I feel like my liver and kidneys must be worn out with all the superhuman filtering they've had to do for me.
I don't see Verzenio in your history-- did you skip it for a particular reason? My onc said she would still give me Abraxane even though I did 2 years of weekly Taxol already, so I'm wondering why Taxol wouldn't be a future option for you.
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Hi Lulubee, Abraxane is a good option to have in your arsenal and the taxanes tend not to be cross-resistant. Are you still on Verzenio now? I see in your signature you started it in 3/2019. As for other chemos, Gemzar, Doxil and Navelbine are all very tolerable. Those could be potential options for you in the future. Congrats on 10 years with Stage 4, particularly since you have had organ involvement from the beginning!!
I haven't done Verzenio but would consider it. I don't have a strong confidence it would work but would try it. My MO and I have been mostly focusing on chemo for me. Prior to Piqray, I had tried 3 targeted therapies and only 1 worked - Ibrance. Afinitor didn't stop the cancer although it slowed the growth and metabolic activity a bit. FGFR1 inhibitor, erdafitinib, did not work at all. In contrast, all of my chemo lines have worked.
As for Taxol, I am severely allergic to it. I went into anaphylaxis within minutes of starting it when I was early stage and then was moved over to Taxotere. A small % of patients have an anaphylactic reaction to Cremaphor, the binding agent in Taxol. Fortunately, the other Taxanes do not use the same binding agent. If the taxane pill form ends up being approved, I would definitely try that. I would really like to get on DS-8201 (Enhertu) for HER2-low BC. It is not yet approved for HER2-low but I am now working on trying to get it off label.
It is definitely hard on the body to do all these treatments. My body has withstood everything very well, considering, but our bodies do have their limits. I am in a delicate state of trying to go easy on my liver but find something strong enough to work. Tough balancing act.
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JFL, I sent you a PM.
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JFL, thank you. I'll keep all of that in my back pocket.
I hope you prevail in getting Enhertu off-label. Seems like they ought to let the heavily pretreated population elect to try a few unorthodox things, if not out of mere compassion then at least out of curiosity. Who knows, we might learn something.
I wonder often about circling back to a therapy that produced long PFS. For me that would be Xeloda--three years and most of that NEAD. Nothing else has come close to working that well for me. Now I am almost 4 years and 3 TX lines past Xeloda, and surely my disease terrain has changed significantly. So why do we not call that pitcher back out of the bullpen?
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