Ibrance no longer working

[rpeacock]

So oncologist said we would change to new meds to replace a Ibrance and Femora/Letrozole. Makes me wonder how much time I have left. I was diagnosed in April 2018. I knew something was off, or had been off for a while.

[KMBL_]

What did they find? I take it they found progression. I've seen some of your posts about chest pain and other things.

I was diagnosed in May of 2019, and there is a shadow on my omentum now after being found in my stomach, but they don't know what it is. They're just going to keep an eye. I had a PET/CT scan yesterday, and it says there is haziness on my omentum in a few areas, but it's not avid, so I'm going to have to wait. I have an appointment with my doc on Monday, so I'll have to see what he says. I'm also on the Ibrance/Letrezole combo.

I've seen people say they had to switch and get many more months or years after switching. I hope that's the case for you. Please keep me posted on what they do.

[rpeacock in reply to KMBL_]

Yes, they found progression. They found spots in my head that nobody ever mentioned before. They must be new. I hope Monday’s dr’s visit brings you good news!

[KMBL_ in reply to rpeacock]

I'm so sorry. I would like to know what your next line will be. I am still on my first line, but I know there are others. My doc asked if I wanted to switch to Verzenio before, not because of any progression. I said no because the I/L was still working. I'm not sure what they'll say Monday. If I remember, I'll keep you posted.

[Hidden in reply to KMBL_]

I am on Verzenio after Ibrance. I love the Verzenio compared to how lousy i felt on the Ibrance. Verzenio comes with its own side effects, but I could not tolerate the 150 mgs. or the 100 mgs so I am now on the 50 mgs. and the difference in how i feel is amazing. It is taken twice a day with no breaks. The higher doses were hard for me to manage, and I told my onco no can do. So I am on the lowest dosage and I get bouts of diarrhea but I can control it better now. I do not find myself as tired and no longer have to take naps.

You may be able to tolerate the higher doses of Verzenio than I was. I have been on it for about a year now. Good luck.

[KMBL_ in reply to Hidden]

With the work I do, having bouts of diarrhea would not work. I am a closed captioner. My jobs last usually anywhere between an hour and three hours. Once I start, I can’t get up. I’m too nervous that I wouldn’t be able to do that. I hope I don’t have to try. I’m glad you feel so much better. That’s awesome.

[Hidden in reply to KMBL_]

Quite frankly, in the beginning at the highest dose, it was bad. Now, quite frankly, it is under control. I am also on percocets now 10 mg. 3 x a day so I think one balances out the other and I am having better bowel movements than I did precancer.

Just curious, what is a closed captioner? Is that like a court reporter at depositions?

[KMBL_ in reply to Hidden]

Do you use anything else or it’s okay with just the Percocet?

Yes, we use the same machine as a court reporter, but we write live as it’s going on. I used to caption news, but now I mostly caption meetings and webinars. It’s for the deaf and hard of hearing and even people who use English as a second language. Luckily, I came home to work back in the beginning of 2015. I’m so glad I work from home.

[Hidden in reply to KMBL_]

Sounds interesting. When I was younger, I wanted to become a court reporter but I wound up becoming a legal secretary working for large international law firms. Before the recession in NY, I was making close to $75,000 working for a partner and three associates. I did not have a college degree. I had crazy benefits and the most I did all day was print out my partner's emails for him.

Then the recession came and then large firm (300+ attorneys) realized we were being overpaid and no big firms were paying that kind of money. So it took me over a year but I found a job at mid-sized firm for $55,000 and even thought it was a big downhill for me, I knew that in this recession, I was lucky to have even gotten that much.

So I worked in legal since I was 20 until I was almost 57 when I got diagnosed. I started to hate it though.

I just started getting the percocet but and my first dosage was 150 mgs. Stomach pain, severe severe diarrhea that I could not leave the house and I stopped it myself after two weeks. Then she gave me the 100 mgs. and I felt the same way and stopped it myself after two weeks.

Then she said last try and gave me the 50 mgs. I think maybe for the first 2-3 weeks I had looser stools but then even after that, it kind of stopped, I ate more rice things and binding stuff to the point that than I got constipated.

But even before I was given the percocet, my body adapted quickly to the Verzenio and I didn't really have severe diarrhea anymore. My onco (at first) told me to buy a lot of Imodium AD. I think I used it once on the 50 mgs. I still have like four boxes left.

To me I think the best thing about the Verzenio was that I didn't get that train wreck of fatigue like on the Ibrance. I don't get tired on the Verzenio and I more or less feel normal now. There are some days if I eat alot of diary, I may have the runs but I can control it now.

OMG...on the 150 mgs. It was insane. I said how do people do this. I am happy with it now. My body has gotten used to it so diarrhea is not an issue.

I sometimes forget (alot of times) to take my second dose and yet my CT scans have come back as stable. I once (I know stupid) wanted to test and I did not take my Verzenio for a full month on purpose to see if my cancer would spread or not spread. So I stopped taking it a month before my test and my results came back stable.

Now, I would not continue to do that but hey I was kind of surprised that my scan was stable.

I still forget (gotta take it now) that I have that second dose. So many times I wake up in the morning and think Damn..I forgot to take my second dose but feeling okay. Now that I am feeling okay we are in shut down isolation in NY. I can't win LOL

[KMBL_ in reply to Hidden]

I’m so glad it’s working now for you.

Oh, gosh, you’ve had quite the ride in your career. I was a court reporter for 18 years before switching to captioning. I’ve been in this field for 36 years. I’m sorry you didn’t get to do it.

[Susan1953]

Hang in there. There are more treatments available. I do not know where your Doctor is but you need to be seeing a breast cancer specialist at a hospital that has access to lots of trials and newest treatments. I am in Alabama and go to MDA every 3-4 months. I see a local general oncologist every month for labs and prescriptions.

This is not a time to give up.

[rpeacock in reply to Susan1953]

Where in Alabama do you live? I moved to SW Va. where my parents and sister are so I’d have a support team. I moved to Va from Dothan, Al. I’m not crazy about where I am (Clintwood,Va.) I loved Dothan,Al. The thing here is, it takes an hour to get to a hospital or cancer center.

[Hidden]

Don't think like that. I only lasted on Ibrance for three months but not bc of progression but because I could not tolerate it and my white blood cells were way too low. I am now on Verzenio for over about a year now (lowest dosage) and I so much prefer this drug over the Ibrance.

Some meds work better for some people. So may Ibrance did not work as well for you as other women, but the next drug may be the one that you are on for a few years. I have seen woman post they are on their fourth line of treatment. Hugs.

[rpeacock in reply to Hidden]

Thank you sweetie!

[Hidden]

Hi rpeacock -

I know it's awful to get news of progression and a need to change. I changed from your current treatment - LET + Ibrance - 18 months ago, swapping out the Letrozole for Faslodex, retaining the Ibrance. Is this an option for you, or have you already done Faslo? I don't know if "they" (insurance? medical center protocols?) currently allow this, I think they do. But at the time my doc coded the change due to side-effects, not progression, to get it through the system.

At the time I was heartened to read here on the site about a friend of a member who was on Letrozole for something like 4 years, and then went on to do Faslodex for something like 9 years (and maybe counting?). So my takeaway was that the second treatment does sometimes outlast the first. I hope this is the case for you...

As others have mentioned, there are several non-infusion treatments available...Ibrance, Verzenio, and Kisqali. My doc at a research facility said that they are not entirely interchangable - One of the three appears to be effective after Ibrance, "it works via a different mechanism". So I would explore the option of pairing the Ibrance with a new hormone therapy or, if that's not a good option, maybe moving to a different CDK inhibitor, i.e. an alternative to Ibrance.

Also, have you had the genomic testing done? Lots of women with hormone receptive BC have mutations that are actionable. E.g. I I have PI3K mutation and so Piqray (I think that's the one...) is another oral treatment queued up for me, when Ibrance + Faslo fails...

Again, I'm so sorry. It can certainly be disheartening. But in terms of you wondering how much time you have left, my onc recently told me that she wouldn't be surprised if I lived 20 years, and I'm on my second line treatment. There's a lot out there....

Take care,

Lynn

[Lisa-n-AZ in reply to Hidden]

Lynn, Hello your post was so enlightening. Diag Feb 2017, 3 cycles of IV Chemo (Red Devil), changed oncologist. I am currently on cycle 35, Ibrance 125+Letrozole. Was NED for 2 years. We recently found 2 new tumors in my liver, biopsy complete, pathology/mutation testing pending. My doc said if still ER/PR he recommends Ibrance+Fulvestrant and if the Pi3K mutation +, put Piqray on hold for backup.

So you have been on Ibrance/Faslo for 18 months are you NED? What dose of Ibrance are you on? I recently took 3 weeks off because I was tanked after 34 cycles, sleeping 12-14 hrs a day. Do you find Faslo to have less side effects than the Letrozole?

[Hidden in reply to Lisa-n-AZ]

Hi Lisa-n-AZ...

I'm not NED, have never been, but I've been pretty much stable for five years with widespread bone mets, no soft organs. The "progression" that led me to change from Letrozole to Faslo is questionable, in my non-medical opinion, and I've asked my docs to revisit that decision when the time comes. I think I've gotten them "there", but that's a whole different story...

Anyway, to answer your actual questions, I've been on 125 of Ibrance since the beginning, i.e. 5 years ago. Do my labs look like s#!*? Yes, but I've never had any real problems, have not even had a cold. Knock wood. So there must be more to the immune system than ANC's and WBC's.

I'm so glad to read that you've got Faslo+Ibrance queued up. I do a lot of reaseach, but comprehend only part of it, and remember very little, but I do seem to recall learning something that gave me confidence that the Faslo might actually work better for me than the Letrozole. Maybe it was something about the hormones, maybe Faslo is also used for pre-menopausal women? I'm definitely post, i.e. had my ovaries out, but there's some part of me that has never felt post-menopausal, if that makes sense. I don't have most physical signs and I still feel and look pretty "young" .

In any event, I did almost 4 years on Let + Ibrance and am somehow feeling even more confident with the Faslo + Ibrance. Part of this is due to my good/long response to the Let+Ibrance, but also to what my docs have told me/what I have read.

Too long/rambling a response, but in short, I'd definitely hold out a lot of hope that the new treatment might work even better than the old one. We are each different, for sure, but the change from Letrozole + Ibrance to Faslodex + Ibrance seems almost subtle to me. Give it a chance/some time, and remain positive. That's my advice, anyway!

Wishing you the best!

Lynn

[NShaft in reply to Hidden]

Hi Lynn. Sorry to hijack. When you say your labs aren't good, do you mind sharing your neutrophil count? My doc just switched me to 75mg of Ibrance after a couple of months below 1.0. I only lasted 1 month on 125 and over a year on 100. Nervous about the lower dose.

[Hidden in reply to NShaft]

Hi NShaft -

My ANC's have been as HIGH as 1000 maybe 5 times in five years, i.e. out of almost 60 lab reports . The average is 800; they've gone as low as 600. Again, I've seriously not even gotten a cold, but everyone is different, for sure, so I would never recommend this to anyone else. But it has convinced me that there must be more to fighting off disease than WBC's.

Very early on, when Ibrance was new, my doc brought up reducing my dosage due to ANC's and I asked her to give me a month to get them up. Obviously I had no idea how to do that. But it signaled to her that I was willing to assume the risk...A stance that I've taken on other issues, too, now with her support.

There is good evidence (i.e. at least one credible study? I read about it here on this site..) to suggest that lowering the dose does not reduce effectiveness. There was another study discussed here that in a sort of sideways way indicated the opposite. If I remember correctly, it correlated LOWER ANC's with longer time before progression or something similar (overall survival?) and the study's conclusion made the inference that perhaps higher ANC's and shorter time to progression were related to reduced dosages...The conclusion suggested further study.

My preference for remaining on the higher dose is not science-based, it's closer to a superstition...

I'll mention this with some hesitation: I do sometimes manipulate my labs a bit by changing the timing.

I think that "standard of care" is to do labs the last day of your break week. I used to think that counts were lowest on this day -- they're definitely lower on that day than mid-cycle -- but then I did labs first day (weekday) of break and the counts were even lower. My platelets were so low (850, I think?) when I did this that the nurse phoned me about potentially taking a break. I told her that I was on my first day of break and that they would undoubtedly come up, and I offered to do labs again a few days later to show that they were higher. But when I saw my doc, she said it was fine. I prefer to show very low counts on the reports not only to get insight into where they are at their lowest (because, of course, if they go too, too low it can become an issue) but also because I'm on private disability and from what I understand it is the blood counts that keep me eligible...but I think I'll go back to labs at the end of break week to find that "sweet spot", i.e. low enough for disability but not so low that I need to reduce dosage.

...so, my point is, if you want to approach your labs similarly, which I strongly do NOT recommend (!), you can change the timing even a few days to show different results. Again, this is potentially taking on some risk and is probably foolish.

Take care,

Lynn

[NShaft in reply to Hidden]

Thanks for such a thorough answer. I do know my ANCs are affected by timing but I don't really have control on when I get my labs. I'm involved in the promise study so that sort of dictates the "window". I have had a few times that I needed to hold Ibrance a week so that can mess up the timing. My dr is pretty much by the book and not willing for me to go below 1000. Hopefully I will continue to do well on the lower dose, but none too happy about it!

[Hidden in reply to NShaft]

Oh, wow, I just looked up the Promise Study! You're very lucky to be participating! Good luck with it and I'm confident that - as the science indicates - your lower dose won't have a negative impact!

[Lisa-n-AZ in reply to Hidden]

Lynn,

Thank you for your response. Keep the fight!

[rpeacock in reply to Hidden]

Thank you so much! I needed encouragement.

[Hidden]

May I ask if progression is in the bone or in your brain? My diagnosis came with multiple bone Mets. I have had a new one in my head but my oncologist feels it was likely a small one in the beginning so he is staying the course with my Ibrance. He feels the meds are working as the one in my skull is the only new one and the others have stayed relatively the same size. Make a list for your appointment so you can get all the answers.

[rpeacock in reply to Hidden]

No, they are not in my brain. I have some new cancer in the bone of my head and some older cancer in the lining between your brain.But there is none in my brain. I think it has to go their blood system etc before it can go to brain. I worried about that too.

[Becca65]

How interesting this is to hear how different things are for different people. I was originally given 2 weeks - 2 months *** that was almost 3 years ago. I am going to keep on trying to find new treatments myself as well as listening to my docs and what they think will work best for me. My mets are to my peritoneum only which is almost unheard of and nobody really knows what to do with me. The last treatment I had was a surgical option called HIPEC, they usually go in and remove obvious tumors, lesions. This may include removing some if your organs in part or removing organ/organs all together. This part of the surgery is called cytoreduction. Upon viewing my peritoneal cavity they found nothing they could remove as the entire cavity and all the organs inside have a very thin sheet like layer of cancer coating them. The next step is to close this wound up leaving a couple of small slits open. They insert 2 tubes one to push in under some pressure heated mitomyocin MMC chemo, the other tube sucks the chemo back out. The chemo is circulated through you for 90 minutes, during this period the surgical team is moving you and your organs around to try to make sure the entire area is exposed to the chemo. After this the suck out the chemo and close you up. This surgery can last up to 18 hrs depending on what they remove and scrape in the reduction part. Mine lasted about 4 hrs. My hospital stay was about 72 hrs. It is typically more in the range of 7-10 days and more for people who have had multiple organ removal. This is a surgery that is not done for breast cancer here in the USA although they do as a treatment for multiple other kind of cancers that have mets to the peritoneum. It took a couple of years for me to find a dr here USA that would do and it was consider palliative. It has allowed me to live without chemo for working on a year - I have remained on Letrozole the entire time. Prior to the surgery I had been on Ibrance/Letrozole for 16 month. It was still working but the week off was miserable and I was very run down and low energy constantly the last several months. I also really struggled with keeping potassium levels up on Ibrance. I am now in need of a second HIPEC working to try to get scheduled with this Coronavirus thing happening has been a challenge. If not I will go back on Ibrance.

This was your first round of treatment for your cancer. That usually means they will try other pill forms of “chemo” hoping for your sake the first one they try is tolerated well and gives you another 4-5 years without progression. Hoping by then we will have a cure!

Rebecca

[Hidden in reply to Becca65]

Hi Becca65...

Wow, this is so amazing! Congratulations on doing so well and, gosh, for advocating for yourself and finding the doc/treatment that you needed! Very inspirational!

That HIPEC surgery sounds so intense! But you came through it with flying colors!

Wishing you many more years of success...

Lynn

[PJBinMI in reply to Becca65]

Do you have lobular breast cancer? It metastasizes to "odd" places, like the peritomenum, lining of the eye sockets, lining of the heart (can't think of the name of that). It is usually E + and often responds well to the anti-estrogen meds like Letozole, faslodex, etc. There is a facebook group for those of us with lobular mbc but when I took a look at it, I didn't find it helpful but it might be different now and worth checking out. There is a bc onc at University of Pittsburgh Med Cancer Center, who specializes in lobular bc, a woman whose name escapes me at teh moment. I've had lobular mbc with bone mets only for 16 years as of 3/1 and have done ridicuously well and am on just third line treatment. I am tired and have some other medical issues but am hanging in ! I hope you do well, too. It's certainly worth getting a second opinion from a bc specialist onc. The best places to go are the Comprehensive Cancer Centers, a designation by the National Cancer Institute. On this group's home page, there is a list of them under "resources" on the right side of the page. They have bc specialist oncs who both do research and see patients. They do second opinion evaluations and that can be very reassuring. I saw one right after initial testing and then again about six months ago. I'll probably go back when I have to make a difficult treatment choice. Right now, though, I'm more worried about the stupid coronavirus.

[Selmac]

rpeacock, I was originally put on Ibrance, and faslodex. Didn't work for me at all. 6 months in I had progression. I thought I was done. I went on Afinitor and Aromasin. I've been on it for 2 and a half years with no progression. I was on highest dose for almost 2 years without any problems of blood counts going low. I'm still on it. So other things do work. Good luck. I pray for all of us with this horrible disease.

[rpeacock in reply to Selmac]

Thank you so much. Especially with Crazy times, prayer is especially needed! Thank you. I will pray for you as well. I wish you well!

[Wolverine19 in reply to rpeacock]

Hi peacock, I also am currently on ibrance and faslodex and it has progressed after about nine months or so. Right now we are continuing with ibrance until I make a decision. I can either go on clinical trial this summer which I will find out about at an appointment tomorrow or I will go on the afinitor exemastane combo. I went to the genomics clinic and they are telling me that with my mutations those are my two options. I was not a candidate for piqray. You may also want to check into genomics testing so they can more accurately Target your treatment.

[ALYogaGirl]

There are many options after Ibrance. Hang in there!

[NamasteLove]

There is no way to know 'how much time one has left.' Nor is there any way to know which treatment or combination of treatments might work. Dealing with the unknown is unnerving. My message to you is don't despair, don't give up. Enjoy each day. We are all with you. We are all together. Blessings to you. Healing and hope for us all

[Klamato]

I was on Ibrance for 19 months and it stopped working for me, so my oncologist put me on Verzenio and Tamoxifen. I am now waiting for bloodwork to come back. Last week my white cells dropped again and the doc took me off the Verzenio for a week. I am waiting to hear if my white cells came back up, but haven’t yet received that information! What’s next, I fear! Hope and pray, that’s all I can do right now! Next step will be chemo, ug! This ugly disease needs to be conquered and now! Good luck to you going forward! Kathy

[NewZealander]

Hopefully my story will give you some encouragement. I was diagnosed in Jan 2018 (metasases to spine and pleural cavity) and was initially on Letrozole until that stopped working. I started on Ibrance and Faslodex in Apr 2019 and in Sep 2019 my PET-CT scan showed new tumours in my liver and spine. At that time my Oncologist switched me to chemo (Capecitabine, also known as Capercit) and my scan this month showed a significant improvement - stable pleural disease and smaller liver tumours. I have tolerated Capecitabine very well and found it to be much less punishing than Ibrance. I'm managing to continue working and live a full and active life (although we are currently in lock-down in New Zealand) and look forward to another positive scan next time. Chemo might work well for you too, it's something you might like to discuss with your Oncologist. Kind wishes, Jan

[rpeacock in reply to NewZealander]

Thank you so much!

[shannamilton]

Ibrance stopped working for me almost immediately. I was able to take anastrozole for a year after before it stopped working. Now I'm on taxol chemotherapy again and cancer is almost completely gone again. Dont give up!

[rpeacock in reply to shannamilton]

What kind of cancer do you have?

[shannamilton in reply to rpeacock]

Er+hr- invasive ductal carcinoma, metastasized in spine, liver, and sternum

Brca 2 positive

[rpeacock]

I have metastatic abreast Cancer.

[geewisdom]

We must continue to encourage one another. For some of us, it may feel like you are fighting this battle all alone but it's blogs like this that make us a family, united on the same front. Don't give up and there is a brighter side of things coming your way!

[rpeacock in reply to geewisdom]

Thank you. God speed to you