Ibrance Users greater than 24 months
Comments
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Hi, Tinkerbell,
I have the PIK3 mutation, and I also have the ErBB2 mutation. I am in my 10th cycle of Ibrance (so just ahead of you). However, my tumor markers have been rising, so I may be soon changing to another treatment. I didn't know that the PIK3 mutation can cause issues with this drug -- I did know that the ErBB2 mutation could. Very interesting.
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Hi!
I am waiting to hear back from FoundationOne that will be testing for mutations..also waiting for PK3 results.
I was on I/L 39 months until progression. I will report my results!
Now on Xeloda and so far, responding.
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we must be in the dark ages here as none of these mutations ( apart from BRCA) or tumour markers have ever been mentioned
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Karen,
These are things that show up on a Foundation One genomic report -- I had one last May. Before that, I knew nothing about all of this stuff. I think now they have a separate test just for PIK3 because of the release of the drug Piqray. Of course the drug manufacturers would provide a test that would get more people to buy their drug!!! Perhaps you are luckier not having to deal with all of this "extra" stuff -- for me at least, it causes me to read more than I probably should which scares the bejesus out of me most of the time and then has me worried about all sorts of things that have to do with any mutations that I have or might have. Lots of yuck.
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I guess with the lack of responses with the Pik3ca mutation 24+ months out must either be folks without the mutation, never was tested for Pik3ca or are non responders. In any rate time will tell. Let’s hope it’s nonresponders that have the mutation.
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hi tinkerbell,
I had pik3ca checked but only because my journey was just starting out shortly after piqray was approved. Since it was only approved last year (if I recall correctly) I would imagine that most 24+ month ibrance users haven’t been tested for the mutation?? Because, putting myself in their shoes, if I were stable that long I don’t think I would bother with any other tumor marker tests until progression and a new biopsy. So try to not get discouraged by lack of response because I think you could be right that most just haven’t had it tested
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Thanks Danbee. You could be right. However I had my initial tumor tested 8 months ago with Foundation One, which identified the Pik3ca mutation before Piqray was available outside a clinical trial. So I’m sure there are some folks that had their tumor tested years ago and would know if this mutation showed up on their report. From my understanding you either have the mutation or not, it doesn’t change over time.
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My recent liver bx showed no PK3 mutation.
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Hi Tinkerbell, sorry I didn't respond to you. I was tested last year for mutations, three years after I started Ibrance, as my onc was being proactive for potential progression, but I tested negative. I am four years into 125 mg Ibrance/Letrozole. My original tumor sighting was in my lymph nodes and they have never found a tumor in either breast. I did, however, have many tumors in my bones and several in the nodes by and in my liver. Sorry I cannot be any more helpful.
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SandiBeach and IntoLight: Thank you for responses. I was hoping to hear some one with 24+ months with PIK3CA mutation. I’m on 8 months and will be scanned soon. Was hoping to have a morale booster....More then likely I will have a shorter duration on I/L due to endocrine resistance. I will keep everyone posted that may be in a similar position as me.
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Tinkerbell,
Have you and your doctor considered switching you from letrozole to faslodex in case of a suspected endocrine resistance? The PIK3 mutation, to my knowledge, doesn't relate to endocrine resistance -- the ESR1 mutation does.
Something to raise with your doc.
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Unfortunately there are several studies pointing to endocrine resistance with the PIK3 mutation. Depending on the outcome of the scan I will ask about the Faslodex. Definitely not looking forward to more shots. Yikes
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Tinkerbell,
I was just chatting to a friend who has had a terrific two year response to Verzenio and is ER+ and PI3K mutant from the get-go, so don't give up hope prematurely, it is a very strong drug!
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SandiBeach, Thanks for starting this thread but I’m sorry you’re moving on to a new treatment just as I discovered it. I hope the new treatments do their work on your liver!! I also hope you continue to post here on “your” thread. 😊
I don’t quite fit here as a poster (Cycle 15, I think) but appreciate being able to read here. Best wishes to all. 🌺
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Hi all. My oncologist called me this morning with news that after four years on Ibrance/Letrozole I have progression in my liver (ten new spots) with additional uptake in my sternum, and spine. I expected the news simply because of the speed of the phone appointment. She is trying to get approval for a liver biopsy to determine if it is still all BC and check for mutations. Her thoughts are to switch to Xeloda if possible or move on to chemo if warranted. I know nothing else at this time. Today has been a struggle and I appreciate your suggestions and prayers. I am praying for peace and trust that God holds me in His hands and will be with me each step of the way.
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Hi Intolight,
4 years! First off, that is wonderful and will give boosted confidence for those now on Ibrance and antiestrogen.
I lasted 39 months and just started Xeloda. We will begin this new journey together.
S
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IntoLight you’re entitled to feel down with that news. Hope both you and Sandi do well and knock the thing back down on Xeloda if that’s what the plan is. Isn’t it sad that we know it’s probably bad news when they contact you quickly?
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IntoLight and Sandi- Sorry you both have to deal with this right now, Xeloda is an excellent choice to get the mets under control and hopefully we will soon start getting more results in from the longstanding trials testing the SERDs, new drugs like the AKT inhibitors, immunotherapy combos, etc
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Yes! My MO knows I am very interested in the future of oral SERDS. It is like waiting for the next season of Outlander.. with the pandemic, who knows when it will happen.
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Curious. Thank you for the morale booster and the tinkerbell image. We sure could use a little “sparkle” to add too our lives. Sorry to hear about the folks with progression. Sadly to say The majority of us will arrive at some point to progression unless science ultimately prevails.., let’s hope we stay in the race until this day comes....
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So sorry to hear that Sandi & Intothelight have to change meds. Like everyone else I hope that their next meds treat them kindly.
I have taken a cycle out from Ibrance at my Oncs suggestion due to the risk from Covid19 with low WBC etc. I continued taking Letrozole and had my 3 monthly Xgeva shot. However last week I decided to get back in the saddle once more and started cycle 46 🤗0 -
Chico, so happy you have 46 cycles. I am actually on cycle 53 right now, but it will be my last. (13 cycles a year times 4 plus one) My onc wants me to continue this last cycle until we decide the next med. Today I feel better, not so shaky, but still a bit down. Chris
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Chico, Intolight, Cure-ious..my longtime Ibrance/antiestrogen friends:
We will continue to show others it is indeed possible to be long time users on this combo and have good quality of life..even when neutrophils, platelets and red cells are low. We listen to our bodies and adapt.
There are many on BCO who are long time users, they just don't post here. They share their collective wisdom on the Ibrance thread.
Sadly, I move on to the next drug, but grateful for my 3+ years.
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Hi Micmel
How long did it take for you to know Ibrance was working for you?
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SandiBeach, I am right behind you. After four successful years on Ibrance I am waiting for the decision on my next treatment which hopefully will be made after my liver biopsy next week.
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Intolight, please keep us posted. All of us who have been on Ibrance plus antihormonal wonder what will be next.
All situations are different. For me, I needed a tx to hit the new fast growing liver mets hard. It may or may not be the maintenance drug once I am stable.
I will be thinking of you while you are undergoing your liver bx. Will liver tissue be sent for Foundation1 (or similar) testing?
S
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Hi Imagine, I am not sure if Micmel frequents this thread.
But with my own experience, once I became stable with AC for liver mets (3 months), it took 9 months to finally reach NEAD status based on my CT contrast scans and my reliable tumor marker, CA 15.3.
There is a great thread Ibrance (Palbociclib) that offers a wealth of information for Ibrance users..there are newcomers and long time users on this thread and are a wonderful source for questions.
I will edit once I copy link. I always lose my comments when I try to go back and link a thread.ugh..
https://community.breastcancer.org/forum/8/topics/...
S
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hi I've been on Ibrance/Femara combo since 11/1/17; I don't know what # cycle; but currently & past 6 scans over 18 months have been NED. My UCLA Onc says one of his patients in first trial has been on Ibrance for 10 years! Sending good carma & hope that others have similar luck with whatever Med combo is working for them. My cancer spread to lymph & lung initially in 11/2027. Does everyone still do their CT Scans every three months my Onc is trying to spread it out to 4 or even 6 mos. which I'm not comfortable with. thanks.
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Bailey, good for you on the NED. A wee bit confused as to your years - did you mean 2017? As to scans I started on 3 months and moved to 6 months pretty quickly once I became NED too. My MO actually said if I found scans too stressful we could just go with symptoms appearing....ehh I’m having the scans thanks. I’ll deal with the scanxiety!
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hi Karen; thanks yes 2017. I opted to do Scans every 4 mos too; so far Onc allows that. I hear of others having PET SCANS & my Onc does not do marker CA 27-29 only the other one; Should I push for both—I mean why not if it’s an available latest-cost?
COVID-19: onc also said...”your not at high risk” but allowed me to get antibodies tested; prob since I told him my motive wasn’t self-serving: I wanted to donate plasma. I live in calif and have never been tested for virus; though I was symptomatic 2xs; turns out that was r/t the iodine drink for CT Scan-now they just do IV Contrast-YAY! Anyone else eliminate the drink; I’m bit nervous it won’t see something once Ibrance/Letroziole stops working.Heat wave this weekend in all of California-I’m hitting the beach for picnic! How do others cope with staying in during the pandemic? Anyone on this site become “virtual” friends. I’ve not been able to see family/friends back east & would love to meet new people here; but it’s almost impossible due to COVID restrictions.
Any other suggestions to make new friends after moving across country. I know in the past I allowed people to be-friend me (ie choose me) & that didn’t always work out—I guess since I had army-brat upbringing I’m not good at choosing the right friends and at keeping up/nurturing and having long-lasting friendships. Seems other person typically “bails out” can be at 1, 5, 10 & even 20 years into “friendship”; kinda depressing; but I thought I’d get back out there only this time I’m going to be more selective on who “I” chose to have as a friend, try to “read” people better, and also keep up with clubs/group activities-sometimes it may be better to socialize at “arms length” rather than going “all-in”?
I’m extremely lucky to have had many friends & one friend who was actually more like a sister for 25 years but she died at age 40 (no one is a match to my Diana!) & my DH and 2 children for the past 35 & 21 years respectfully—so its very nice to be close to them & our extended families are great; but back in Boston! Also my mom just died and she lived with us for 13 years then was in Assusted living for Alzheimer’s for past 5. I’m ok with that; but yet one more great friendship gone. My DH & son who I live with is great but sometimes you just need female perspective/commaraderie. My daughter is great but she’s got BF & works & lives 5 hours away. I had ~4-5 good girlfriends when we moved here a year ago; but we’ve lost touch due to distance and CV-19 restrictions.Thank you all.
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