hi guys! So I have been told I have some progression and my dr wants to start me on. Piqray! I have another Dr ( my 2 opinion) that offered me a trial for a drug that I coming out and very similar to this drug but suppose to be better with no side effects
My question is how do you guys feel about trials and is a beneficial to be involved in them? I'm not sure what I want to do
I was never involved in a trial but I would if available for me. As far as I’ve read Piqray causes lots of side effects, so it could be promising trying a different treatment.
Hi Diana,
If the trial drug is similar to Piqray, I’d be inclined to give it a try. I realize that side effects vary among patients, but Piqray is notorious for rashing. I developed it everywhere and elected to move on to a new treatment. You could have a completely different response. Whatever you decide, I wish you all the best as you move forward! God bless you, Diana! 🙏🏻🙏🏻💗💗
Linda in Seattle
thank you so much! Ya it is suppose to be like Piqray without all the side effects! My thing is if it same and I wait a few weeks or months to start the trial, I'm afraid of progression, I may want to take my chances on Pikray and skip the possibility of progression Idk I wish I had a post the answer
when is the trial available!
now! I think they opened it up in April it's still really new!
My question is everyone getting the trial drug or are some getting a placebo. You want the trial drug!
I thought with the trials there had to be some placebos and they never told you which you were getting. I guess I’m a wimp but I don’t think that I’d want to take the risk. We all react differently to drugs and as my next one is Piqray once Verzenio fails, I’m just trying to be positive. You have a tough decision but you’ll make the right one for you. Good luck Chris
These days there are not many trials with placebo. Generally they have the standard of care treatment for MBC, and another arm with the trial drug. Some have multiple arms, but all include treatment. I have enrolled in 3 trials, personally with MBC would not even look at a trial that had a placebo.
That’s good to know. Thanks
I was on Piqray for 14 months and it was by far the easiest drug for me. You do want to watch your carbs as Piqray by nature will cause your blood sugar to go up. Some get diabetic! The Keto diet is strongly suggested by the scientist who developed Piqray. I’d take Piqray over a trial that may or may not work hands down
the trial is Piqray meds with less side effects!!!!
we’ll the. I would ask if the two study groups are those taking straight Piqray vs the other group with Piqray w/less side effects. I would want to go into a trial where the placebo is nothing. Especially since Piqray is a known drug that you can manage side effects from.
well there are no placebo trials with metastatic breast cancer I was told they said they never do trial with Met cancer at all
Great ! That should make your decision easier
I suggest you go on Facebook and join the Piqray Facebook group. Tons of knowledge there and far more in depth than Healthunlocked on a general platform.
dear Adele_Julia----I am not on Facebook but my Foundation test indicates Pikray and my Oncologist wants me to take Ibrance because of less side effects. I have MBC in my liver. Is there a way that I can access the info about Pikray on Facebook?
I joined Facebook solely to access many Facebook groups - MBC, Piqray , etc. Wealth of information there and on the posts. There is an FAQ document that’s posted there. I can see if I can download it and send it but here there does not seem to be an option to attach a file. Any suggestions to get this to you? I really think the posts are the most helpful …
I'm on there already!!! Thank you so much for the info.
I have been sent me the link by one of us to the Facebook link to Pikray and so I will proceed. Thanks to all of you! Sometimes we offer more info than the doctors.
It’s very interesting to hear about the suggestion of limiting carbs due to known effects of Pikray. I’m on Afinitor now which can have the same effect of raising glucose levels to dangerous levels. Food for thought (yep, pun intended! Haha) regarding using diet to avoid that issue!
I am on Piqray and I didn’t have any “dealbreaker” side effects. I did get the rash, but I took Claritin for a few days and it cleared up. I’ve had some effect on bowel but not diarrhea. My glucose stayed normal. Of course everyone gets different reactions but mine have not been bad. After a year of this up and down, I’ve decided to try not to worry as much about side effects of a new drug because it could be the one that works. (Ibrance didn’t work for me plus gave me pneumonitis whereas it’s so great for many women. Go figure!)
I would try Piqray. At the same time you might find out more about the other drug trial - what phase is it and what are they comparing it to.
Sending you prayers for a good run whatever choice you make.
Best,
Helen
I have never been on a trial either. I was offered one when I was first diagnosed, but declined as I was just struggling to deal with the diagnosis and they said there was a lot more testing that would go along with the trial. If I needed to switch to another med in the future, I might consider a trial, especially if the med had less side effects than the similar one. I guess I would find out what the trial entails as far as scans, etc. and find out as much info as you can before making a decision. Sending you hugs, prayers and best wishes and hope that whatever you decide the treatment works well for you.
I know it hard enuff to deal with the diagnosis and 3 months scans having to go weekly and do blood work and all kinds of testing is not my cup of tea!
Ok sorry, but my experience on a trial at Dana Farber is completely negative. I was doing fine at RI hospital when my oncologist suggested I do a trial. Everything was fine in the beginning. I was put on 2 Pills a day. I was told they were the new Faslodex. I said to DF the only thing I new about a trial is sometimes not knowing you get the placebo. He told me it was beyond that testing and I was getting the real thing. I believe he lied. I had no side effects and life was fine for 2 months. I then started with horrible back pain and was told to go home and take 800 of Motrin. REALLY! I call My DF doc when I got home and insisted on a ct scan and bone scan of my spine. They found 2 tumors pressing on my spine and told me to go home and find a neurosurgeon. Exact words were there’s nothing else we can do for you. REALLY!! I will never do another trial again. I know they are probably necessary but for me it was just playing with my health. I have since had to have my spine opened up to relieve the pressure the tumors were causing on my spine. I love my neurosurgeon at RI Hospital. I went through radiation and now for the first time I am on iv chemotherapy. I realize there are some positive outcomes for trials but unfortunately not in my case. Never again would I go to DF.
oh no! Thank you for ur experience! I am scared too that there is a chance it won't work! From what I was told was there are NO placebo trials with metastatic cancers
I am really sorry for your experience on the trial and such a huge effect of the new tumors on your spine requiring so much treatment. I hope the new treatment works well for you!
To their defense though I really doubt a doctor of a trial would outright lie to you. They take their studies incredibly seriously. Unfortunately once a treatment has proven not to work they really can’t do anything for you because of the fact of it being a trial. Though I would’ve thought they would offer for you to see one of their own neurosurgeons at the facility (in the regular part of it, vs the trial doctors)!
It probably won’t make you feel any better about that situation but the truth is that Faslodex might not have worked for you at all either. We all take that chance with every single drug. There’s always someone for who a drug just does not work at all. And that, sadly, is the huge messed up fact of cancer.
I have a friend who was Stage 4 from her very first diagnosis, despite being very young at the time. Many people thought she was taking a huge risk deciding to poo poo ALL the standard treatments of the day and go into a Stage 1 trial of a new drug. It’s now 14 years later and she is STILL going, despite nearly everyone else not tolerating it or failing. So we just never know .
Wishing you the best moving forward and a big virtual hug
I would try low dose piqray… good luck to you🙏😉
I might try Piqray first.It is in my future also
Which phase of the trial you are going to join? If it’s phase one or two, you will get drug directly. I attended several trials already. All of them are phase one trials. Some gave good responses but some didn’t. In phase one trials, you will need to visit hospital more frequent in the first one or two cycles. My was every week. They watch out your body closely to see if there’s any difference. You will also have more blood work and other tests like EKG or echo to make sure your body still in good condition.
My experience is if you want to join the trials, don’t wait until you have done most of standard treatments. You will have less choice of trials because of the restrictions on trials.
yes it is a phase one I think!!! There is NO placebo! It's funny I get mixed reviews about trials! In a way I want to but I'm also scared it's gonna spread in the meantime waiting to start because I know there is an inbetween time before you start! I'm gonna go tomorrow for the consult and we shall see glad you had a great response
yes. There is always break time between trials. Within this time, they also need to get financial clearance from your insurance company. It normally takes two to three weeks. Your cancer might spread more within this time for sure but not sure for how fast. The good thing is if the trial drug works those progression parts will be decrease and you can stay on the treatment longer because of less side effects. It’s always a dilemma.
Can you please point me anywhere for that information about being in a trial and getting insurance clearance? 🙏 I’m in a dilemma right now and not sure who to reach out to for help. I did my first trial starting December, at Penn medicine. I had been previously for 2nd opinions so had a doctor who was also connected for the trial. Never had insurance issues for doc visits before - thought I paid standard co-pay. Anyway, did all the scans and prelim stuff- eventually got EOB from BCBS and all was covered. But they’re slow with billing. Seems like about 2 months into this year before I got new bill and suddenly it’s like Tier 2 and owing 50%!! (It’s the next state over from where I live). I’m furious about it. BCBS claim it was always Tier 2 but honestly it doesn’t make any sense and the hospital billing has been no help at all so I’m at a complete loss
I am the patient in MD Anderson and my Dr is in Clinical Center of target therapy. You can search online and make an appointment as second opinion. Once you are in, they will look for a best trial for you. Research nurse who handles the protocol that doctor chosen for you will contact you and help you to process the rest of things such as scheduling required testing and financial clearance. About financial clearance, pharmaceutical companies only pay the cost of drug and your insurance still needs to pay doctors visits and testing. Most of trials need more frequent blood work in the first two cycles and more frequent scans in the first few cycles. Those are the things need to get insurance approved as financial clearance. Hope I answer your question.
I’m in NJ so MD Anderson is not doable for me. Maybe that’s the way they all bill trials then and I just didn’t know it. Except in my case the Faslodex (estrogen knocker) was still billed to my I insurance which I thought was ridiculous.
May I ask what treatment lines you have been on so far (for mets)?
You can find the closest facility where handle more trials and make an appointment for second opinion. Be honest, to be in trials really needs a lot of traveling for doctors visiting and testing. Some pharmaceutical company do reimburse the travel expenses, but most of them don’t.
I am on my 14th line since Med five and half years ago. There are four clinical trials in these 14 lines. My cancer is aggressive and tricky. I’m ER,PR +, Her2 +, and ER,PR + ,Her2-multiple types.
Oh my goodness that’s a lot of different treatments, although I can see why now!. It seems crazy to me that we can have two almost opposing mutations like yours. Well it’s all done you well 
The one trial I took part in was at Penn Medicine who does specialize in research too. But that’s where I had the issue with my insurance 
Normally nearly everything is completely covered at my regular hospital!
Even I have quite good insurance, I still met my annual out of pocket every year. There are more frequent scan and other testing under trials which I still need to pay 20% deductible until meet the annual out of pocket. Compared to other countries which have governments health insurance, I am really appreciative I live in the country which has more treatment options especially my cancer is critical to be treated. I almost run out of standard care. Without trials, they will probably put me into hospice now.
I'm not sure how it works.... on my opinion trials should not be charged since we are being tested on for the future of cancer
I know what you mean. I had the same thought in the beginning. I thought I already dedicated my body as an experimental mice for the research, I shouldn’t be charged any extra. Unfortunately, it’s not the reality. One of the staff who works on the protocol told me, from researcher’s point of view, they put a lot of effort on from thousands of protocols trying to find the best treatment for patients. If the treatment works, they think they saved patient’s’ life. When patients dedicate their bodies for research, they also benefit from the research. I don’t work for pharmaceutical company, not sure what their thinking.
I was also on a trial for oral Faslodex. It was fantastic! There were two arms: one with Ibrance, and one without. Since I had already failed on Ibrance (and Faslodex), I was in the arm with just the trial drug. I had NO side effects. Felt better than I had since I got old. I was also NEAD for a year! Until I got a couple of little things and was thrown out of the trial.
My onc wanted me to go into a trial then, and she still does, because I am working my way through the standard of care list of treatments. It gave me a year before I had to go to Verzenio (abemaciclib) and anastrozole.
Stage 1 trials for toxicity level are a bit intimidating, but if they already know it has fewer side effects, go for it.
I also plan to go to Dana Farber when I have progression. They seem to know things about resistance, my problem, that my oncologist does not.
You can always go on Piqray later, but you probably can't get into this trial again.
thank you so much! I appreciate this input! I'm so back and forth about it! I'm so grateful for the groups that help me understand and get thru this
Wow! That’s fascinating that you progressed on iBrance and Faslodex but the pill form still worked?! I’m now on Tamoxifen (and old one I took years ago and progressed on) but with Afinitor . Not so convinced about the Tamoxifen but both my docs at different hospitals suggested it. I’m going to ask my doc about that next week!
Right? I totally didn't understand it, despite asking. One of the np's said there is a limit on how much we can give you by injection; we can give a higher dose orally. The oncologist said that wasn't true, and just said they are different. (She is not good at explaining.)
Puzzled that you are on Tamoxifen when you progressed on it before. I guess things that make sense to them don't to us, and maybe there is a logic behind it -- the combination? On the other hand, my oncologist often says that she can't explain, just that "sometimes it works." There also are times when I should have questioned more. I have brought oncologist around by asking questions on rare occasions (or occasion), but one time I asked or insisted to late.
I wouldn't want to be on Tamoxifen just for the hell of it. Who needs more toxins, more side effects? So keep asking.
It’s very true that we have to keep the questions coming and sometimes advocate for ourselves. I regard my questioning sometimes as a double check, that she has thought of every angle relevant to me specifically, lol. She’s very good but sometimes I feel there were lapses in wise judgment (in hindsight) . Anyway….. I’m seeing her again this week and I’m going to ask her that same question AGAIN hoping she can better explain why the Tamoxifen and not the newer drug (I think it is called Exemestane?) . I do need something that works against the estrogen though
Yes, exemestane. When I flunked out of the trial with the oral SERD, having already failed on Ibrance )palbociclib) and fulvestrant, my onc put me on Verzenio and letrozole, then switched to anastrozole because of side effects on letrozole. I went for a 2nd opinion at Sloan Kettering. My onc hoped they might have a trial for me there, but they didn't. The 2nd opinion doc said she would have gone to Kisqali and exemestane before abemaciclib/letrozol or anastrazole because the side effects are less from exemestane. So that seems like a good one to me.
Good to hear. Anastrozole was the worst drug ever for me! Caused me so many various body issues and finally ny brain started going to mush!!
Actually, that is a relief to hear. Anastrozole has been the worst treatment I have been on in 5 years, in terms of side effects. My onc is thinking of reducing Verzenio to 50 mg once a day, but it is the anastrozole that is interfering with my life. I don't think I have brain fog, but I read that it impairs visual memory. It does make me hurt and limits mobility. For a while I had terrible fatigue, really bad, and less pain. It seems to have switched back, more pain, less fatigue. Not sure how much the anastrozole contributes to fatigue, or if that is mostly Verzenio.
Just quickly popping into this discussion and I think perhaps trying the Tamoxifen with the Afinitor is not a bad idea. If scans show it is working then it will let you keep exemestane in your back pocket for future. That's the way I would look at it. By the way Exemestane was approved in 1999 for advanced breast cancer so definitely not new. I haven't seen the entire discussion but have you had scans since starting the Afinitor/ Tamoxifen combo?
I was on Tamoxifin alone for 7 years! Once I stopped taking it a year later my cancer came back!! I'm thinking of asking if it would maybe work for me again
That would be a discussion for sure with your oncologist. The only time I wouldn't return to the same drug is if progression was experienced with it. Cancer is so smart in general but if a drug was reintroduced that it had already outsmarted... it's going to be a short time before it gets the upper hand again.
Thank you! I appreciate your thoughts. I did not realize it has been around all these years?! wow, haha, thanks for enlightening me. I haven't had scans yet for this combo because I've only been on this treatment for a wee bit over a month, so way too soon. I am getting new bloodwork done this week though and visiting my doc again. We will reassess determined on those results because the progression we are most concerned about these days is in my liver, and she doesn't want to let it get too far advanced (not a candidiate for any kind of ablation either). The good news is, after a bit of a hiccup with weird abdominal issues, I feel really good! But the liver does not necessarily cause us symptoms, even if it is still progressing, hence her vigilance
Trials are great…typically you get either the current standard of treatment (possibly piqray) or the new drug, and don’t have to pay so much or anything at all. (They can’t give a placebo with no effect.) AND it’s good for development of new drugs!
With great insurance, I paid $1030 a month for piqray. My side effects (except itching) weren’t awful and it gave me two years before progression.
You can’t make a wrong choice, I think.
I’m on Piqray and so far, so good with no significant side effects 🤞🏼🤞🏼
I’m curious why they wouldn’t consider Xeloda as your next step, a lot of people do that after Verzenio or Ibrance.
I think you should consider going for the trial drug. In the same situation I think I would. Since you are having progression I think you might benefit from the trial drug. All the best. Hugs Marlene
Thank you so much! I'm so unsure! I literally hate having to make these kinds of decisions!! It's so bad cuz on one hand if I do and get bad results I'll be upset! If I don't and get bad results I will wish I did it 😒 it's a crap shoot really
Diana, I just came off a trial , my first. I don’t regret it even though I did progress with only 6 months on it, but I had some experience with drugs before - it was a different combination though, so I wasn’t afraid of side effects because I trusted I would do as well as I had with them previously.
THAT SAID - This trial sounds promising for you but some questions to ask before you agree!
1. Who pays for it? This became a major issue for me but I found out too late and now owe $ that I did not expect. The “Standard of care” was all billed to my insurance (scans, bloodwork, the Faslodex and doc visits!), and BCBS claim the facility is Tier 2 making me pay 50%. Still working on this issue.
2. Seeing as it is a Stage 1 trial. Make sure you know all the options of treatment you might end up on. If it’s just either Pikray or the new one, then that’s great. But ….
3. How long has the trial already been running? And how many patients are enrolled?
4. How are the present patients doing on the new drug in terms of side effects? (How many, if any, already dropped off?
5. Find out exactly the schedule of visits, and remember that will end up being your minimum if you have issues arise on either of the drugs.
There’s no such thing as too many questions so go ahead and chase the nitty gritty details
Well there is only one person at the hospital on it and just started the trial is only 3 weeks old! 😵💫 they are in phase one which is the dosing phase so they will start at low dose and dose me until I get it if I get side effects so nothing is really promised I decided to just start Piqray and maybe I won't be one with side effects not everyone gets them and I also pre meds with metformin and I have clarstin Incase I get the rash 🙏🏼
I hope it goes well then. Yes you never know! Like the drug I'm on now, Afinitor, I was so worried about starting, worried about gut issues and mouth sores, and Nothing! So far is good! One month in now. So I hope you have an easy time like that too!
Just a word of warning about Piqray if you have diabetes or other blood sugar problems: Piqray sent my long stable diabetes numbers into chaos--I was close to 700 when an oncological pharmacist noticed and intervened. No idea how much damage that did to my body, but at least the high doses of medication got me back into less frightening numbers. I remain on those high doses, which worries me, because it means that whatever Piqray did to me, it's apparently lasting damage. I managed beautifully on Metformin for decades, but now need Glipizide (plus double the Metformin dose) to control my numbers. And I was immediately taken off Piqray.
I don't have diabetes or any blood sugar issue as of right now! My Dr RX me preventative metformin to take prior to starting the medication! I guess we shall see!!
So glad they have an eye on it right from the beginning, since my huge scary blood sugar spike happened overnight after the first dose. Good luck. I've heard good things about Piqray and hope that it helps you.
Piqray/Alpelisib (plus Fulvestrant injections) Trial so far
giredestrant with Everolimus trial
Ibrance expensive
Trodelvy update
