If Ibrance failed for you, what was next in line?

JACK5IE
JACK5IE Member Posts: 654

Hi everyone. Looks like I'll be moving on from Ibrance. A PET scan on 3/18 will confirm this but it looks to be the case. My question is that if Ibrance failed for you, what drug or drugs were next and where was your progression? Thanks.

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Comments

  • cure-ious
    cure-ious Member Posts: 2,891

    Jack5ie- Thanks for asking this question, I'd also like to hear how long people got on their secondline treatments. However, just because one has progression on Ibrance-Femara, it does not mean Ibrance has failed. Ibrance cannot do anything on its own, and once the Femara fails, it will not help to take it. But it may still work, for example when combined with Faslodex, which is what I am trying. We need biomarkers to track whether a CDK4,6i is needed and is functional, currently we have no idea unless we are taking Verzenio monotherapy.

  • JACK5IE
    JACK5IE Member Posts: 654

    Cure-ious...I am currently on Ibrance/Faslodex/Xgeva. My doctor mentioned possibly Piqray. I'm kind of worried about what I will be required to take next.

  • sadiesservant
    sadiesservant Member Posts: 1,875

    Hi Jack5ie,

    I mentioned in another post that my MO likes to alternate back and forth between endocrine therapy and chemo. I was on Ibrance/Arimidex but my body couldn't tolerate the Ibrance, then the AI failed. At the time, Verzenio was not yet available. I switched to Xeloda but we weren't convinced it was working (clinical symptoms more than scans) so went to Faslodex. Once Verzenio came available I added it into the mix as I am pretty sure getting it as a monotherapy down the road was going to be tricky and I suspected I was likely coming to the end of the road with Faslodex (again some clinical signals but wanted to persevere given stable scans). I got three years out of the Faslodex, 15 months with the F/V combo but recently there was progression to my liver. Now trying Xeloda again.

    I hope this helps.

  • jobur
    jobur Member Posts: 494

    Hi Jack5ie,

    After Ibrance/Fas failed I went to A/A (Afinitor/Aromasin) or, if you prefer the generic names E/E (everolimus/exemestane). This combo did not work for me but others have gotten some good time from it. Have you had genomic testing? If not, you might ask your mo about this as it may point you towards a tx that targets any mutations. Good luck, tx changes are tough! Best wishes that whatever is next for you is tolerable and effective.

    Jo

  • BevJen
    BevJen Member Posts: 2,341

    Jack5ie,

    As I've posted elsewhere on BCO, I have now switched to keytruda (pembrolizumab) as a single agent after Ibrance/faslodex. I had previously been on just femara/letrozole for many years prior to I/F.

    The switch to keytruda was facilitated by genomic testing. According to my genomic testing, I have at least two other treatments that I can try after this before considering chemo. So, as Jobur says, I think that's the key here.

  • JACK5IE
    JACK5IE Member Posts: 654

    Thanks for your replies everyone.

    Is testing the original biopsy part of genomic testing? If so, my doctor did say he was going to do that.

  • BevJen
    BevJen Member Posts: 2,341

    Genomic testing, to my knowledge, is done of a new biopsy -- the theory being that if something else popped up, it might have changed in some way. Therefore, they test any new stuff to see what, if anything, has changed.

  • JACK5IE
    JACK5IE Member Posts: 654

    BevJen...my doctor did tell me he would be testing the original biopsy which is why I asked. Then I found this actually which says:

    There are several tests used to analyze the genes in a breast cancer to help predict whether the breast cancer will come back (recurrence). All of the tests can be done on a sample of preserved tissue that was removed from the breast during the original biopsy or surgery.

    https://www.breastcancer.org/symptoms/diagnosis/genomic_assays

    He didn't mention the word 'genomic' as far as I remember but maybe that's what he's doing based on this info?


  • Sandy_T
    Sandy_T Member Posts: 1

    Hi JACK5IE,

    I was on Ibrance/Faslodex for 4 months and then got word in January after a CT scan that the liver tumours were progressing again. My MO ordered a blood test which was sent to a private company here in Vancouver, Canada for testing for the PIK3CA gene mutation. We don't currently have the facilities to test old or new biopsies so blood was used instead. Two weeks later, the test came back positive. I started on Piqray/Fasoldex a week later at 300 mg. The side effects were minimal (a bit of nausea) until Day 11 when the full-body rash arrived. Anyway, since then I was given a month-long dose of prednisone along with a daily 24-hr Claritin and reduction of the dose to 250mg. The rash has gone and I'm remaining hopeful that the Piqray works its magic! Good luck with your next chapter. I'll keep you posted on how this new reduced dose goes.

  • BevJen
    BevJen Member Posts: 2,341

    Jack5ie,

    I'm not sure what your doc is doing. I'd ask. All of the stuff listed in that BCO article, so far as I know, pertain to original tumor. The issue now is your new stuff, and what its characteristics are. Think Foundation One, Caris, and Tempus. If you look those up, you will see the difference.

    I see that you are in NJ. If you're being seen at Memorial Sloan Kettering, they have their own "brand" of genomic testing that does the same as the above tests. But again, so far as I know, all of these genomic tests are based upon samples of new tumors, not the original tumor. They are looking for mutations in your cancer from the original.

    Hope this helps.

  • JACK5IE
    JACK5IE Member Posts: 654

    BevJen...yes, thank you. It does help.

    Sandy...thank you also.

  • nkb
    nkb Member Posts: 1,561

    Jack5ie- when I progressed on Ibrance/faslodex I was changed to AA- for me it was an easy treatment and worked for 10 months. After that progression I had a bone biopsy and they did a Tempus test on it- I don't have a PIK3 or ESR! mutation so I was put on Xeloda which has worked for the last 12 months. I am also Her2 low from original biopsy so someday may try Enhertu, although currently it is in studies only for breast cancer. If you are PIK3 + then Piqray is an option.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    JACK5IE, I agree with Bev. The testing should be on a new biopsy, because cancer changes (mutates) as it looks for a way around the current treatment. So you want to know what it is up to now, not three years ago. If there is no tumor that is accessible and safe to biopsy, I could see using the original plus a current liquid biopsy. The liquid biopsies don't seem to be as sensitive, but they can be useful.

    To illustrate from my own experience, the trial drugs that have me moving into my second year of NEAD are for a particular mutation that was found on tissue and liquid biopsies done shortly before this treatment change. This mutation was NOT present in my original tissue biopsy in 2014. That original biopsy showed very few mutations and nothing actionable, so using that sample would have not been helpful at all.

    You have been on tamoxifen and Ibrance + Faslodex. I would expect your onc to try a different targeted therapy such as Piqray, Afinitor, Verzenio/abemaciclib with either Faslodex or an aromatase inhibitor (letrozole/Femara, exemestane/aromasin, arimidex). The genomic test should help narrow it down. In general, faslodex seems to work even when there is AI resistance, but since you have not been on an AI, your onc may want to try an AI as it will be a different med. But I personally would prefer to use Faslodex with the new targeted therapy since it works more often from what I can tell. Faslodex is sometimes used along with afinitor. But again, testing may show another option like a trial (neratinib for me, keytruda for Bev). If there is resistance to hormonal therapies, Xeloda is the typical first chemo, though sometimes it is Taxol if things are getting out of hand.

    If you don't have Bestbird's superb book about mbc treatments, now would be a good time to take a look.

  • JACK5IE
    JACK5IE Member Posts: 654

    As far as testing on a new biopsy, according to the (non-contrast/barium only) CT scan and bone scan the areas of progression are too small to biopsy. I guess the PET scan will tell more. My doctor did tell me they are testing the MBC biopsy that was done in 2018 to see what other treatments could be used (he did mention possibly Piqray). I did get my usual blood draw so I'm not sure if he is testing anything further there, but he very well could have told me he was. I was a bit nervous/upset during the visit so I may have missed something. I guess I'll find out soon enough the next course of treatment.

    Thanks everyone for all your help. I appreciate it.

    ShetlandPony...I just downloaded Bestbird's book. Thanks for letting me know about it.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    That makes sense to look at 2018 if you cannot get a tissue biopsy right now. I very much doubt your last blood draw had orders for a liquid biopsy unless your cancer center has an in-house test. For my liquid biopsies there was a fancy box with special vials and instructions for exactly how the sample should be handled and mailed, and a form for me to sign. So you would have known.

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900

    Ibrance/Arimidex have failed. Cancer spread through lymph/skin all over. PET in 12/2020 did not find in organs, but am scared it is only a matter of time. Genetic profile did not show any mutations for targeted therapy. Stopped Ibrance/Arimidex Feb 20201, start Exemestance/Afinitor March 2021.

    I'm not sure where to post this, so will post on multiple threads. I am so discouraged, depressed, angry as I explore getting different treatment options, including clinical trials. This is the third BC for me. Is each one "new" or did the original beat the treatment? I'm not sure if any of the treatments worked. Just talked to MD Anderson and they indicated they would not do anything different unless it was shown that the new treatment I just started fails. They would not consider me for clinical trials either. Is this generally the way it is with getting 2nd opinions on treatment options? Dec 2019 showed metastasis through skin, but nothing found in organs. Do I have to wait for it to show up in organs before other treatment is considered? That is so wrong.

    2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.

    2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. ). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.

    6/2019 Swelling in opposite arm, urgent care, no clot, lots of fluid. Scans, biopies etc, new tumor R-axilla Dxed 8/2019, ER + 85%. Start Ibrance/Arimidex 9/2019. CTs suggest Ibrance working. With LE and compression pumps starting to get control over lymphedema.

    12/2020 - noticed "rash" and thickening, had been noticing loss in range of motion which I attributed to an old injury and getting older. DR says Ibrance/Arimidex not working anymore. Cancer has spread all over chest area in skin, PET did not find anything in organs. Lymphedema getting very bad.

  • Cocogal
    Cocogal Member Posts: 25

    I have had progression from Ibrance and Femara, after 3 years. I do not know how to edit my profile. Originally my tumor was ER 95% PR- Her2-. Last Fall I had cryoablation to my breast tumor and node for pain management and now the tumor has no uptake in the pet though the node has an uptake of 3. The scan done in February 2021 had progression to lung, 1cm nodule, 2 small bone mets and a second breast node. MO wants to go to chemo now though I am not sure which one he would use. I asked about Verzenio and he thinks side effects are too bad. Next week I l hope to have another Guardant 360, though first two have produced little, the one 6 months ago suggested Pik3 mutation and the MO suggested maybe Piqray if not chemo now. There was no mention of Faslodex. Also there may be possibility of a biopsy of a met for more information. At this point I am not sure what to ask the MO or treatment to consider and I would appreciate any input.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    Cocogal and BlueGirl, to start, have you read through the posts in this thread, and do you have Bestbird's book?

  • Cocogal
    Cocogal Member Posts: 25

    Shetland Pony thank you for your thoughts. I have read these posts and many others. I bought Bestbird's book last year. I didn't expect to go to chemo as the second line of treatment and am at a loss. I don't know if the Guardant360 test is enough or even good enough or are there better choices in other people's opinion.

  • JACK5IE
    JACK5IE Member Posts: 654

    My doctor has told me a few times that he has an arsenal of meds to try when one fails. But looking at Bestbird's book, there really doesn't seem to be that many. Or am I missing something?

  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    Cocogal, in your position I would seek a second opinion at a major cancer center (see below). It sounds like your MO is not sharing enough of his thought process with you, or isn't really paying enough attention. Why does he suggest chemo and not Piqray? Maybe he has a good reason; he needs to share that reason with you. He needs to tell you what chemo he is suggesting. (FWIW I liked the pill chemo Xeloda better than any of the hormonal + targeted therapies.) Does he think it possible and advisable to get a tissue biopsy? They do seem to pick up more mutations than the liquid biopsies in many cases. Tell him you need to be a more informed and involved patient and want to work as a team.

    https://www.nccn.org/members/network.aspx

  • sadiesservant
    sadiesservant Member Posts: 1,875

    Hi Cocogal,

    I think I mentioned further back that my MO likes to alternate between chemo and endocrine treatments. My understanding is that this helps to avoid complete endocrine resistance early on in our treatments. Going from Ibrance to Verzenio if you failed on Ibrance would be unusual as they are quite similar in terms of what they target. Circling back to a CDK inhibitor in the future is a different question. In my case I have done both as I couldn’t tolerate Ibrance.

    As SP notes, Xeloda is often the second line choice, chemotherapy but in a pill form that is generally well tolerated and can have fewer side effects than many of the targeted treatments. I would agree that your MO does not seem to be explaining things well. You need to push for more info.

  • cure-ious
    cure-ious Member Posts: 2,891

    Cocogal, Often you read oncologists recommending to put off chemo as late as possible, and then to try to cycle off and onto targeted drugs in- between chemos. I think most MOs would recommend a Faslodex combination in your situation, but of course we aren't looking at your scans. The promising trial Dee is on with the ARV-471 estrogen degrader (a pill that acts like Faslodex and is potentially stronger) is available, alone or in combination with Ibrance, and a larger trial aiming for second or thirdline treatments is opening in April. That trial apparently will be excluding people who have taken chemo, which is another reason you want to be careful about accepting chemos, they can mess with your being able to get some trial you might want to try in the future.


  • cure-ious
    cure-ious Member Posts: 2,891

    BlueGirl, I hear you, dealing with progression is profoundly stressful, and after first or secondline, it comes increasing on us to decide what we are or are not willing to try- there is no long clear path. Immunotherapy isn't seemingly moving at all for ER-positive cancers, but some approaches are percolating that might hit. We do have some semi-decent PFS in the clinical trial therapies, the SERDs/ARV-471,and Enobosarm , and the ADCs/chemos also had reasonable PFS. The only way this makes any sense is to try to get to stable for a year or more, long enough for something new to come along.

  • Cocogal
    Cocogal Member Posts: 25

    Shetland Pony I agree there needs to be better communication and there will have to be before i commit to the next treatment. My MO did mention Piqray as possibility because the Guardant360 from 6 months ago cited the Pik3. Yet he still recommended IV chemo.

    Sadieservant I asked about Verzenio because I thought it was better than Ibrance and had read it was good for visceral mets, specifically for my lung nodule. I did mention Xeloda but I am not sure why he preferred IV chemo. I will ask him for more explanation when I can talk to him again.

    Cure-ious I expected Faslodex to be a possible next line when I progressed but it was not mentioned and I didn't mention it because I felt blindsided by chemo. Yes, the scan report has generated this situation and my MO and I will need a better discussion about it. My one current lung met with an uptake of 2.78 is 9-10 mm, yet there are many very small spots with no uptake and have been there since dx. When I was dx I had one 8mm lung nodule that made me stage IV, later it grew to 1.2cm. Eight months after dx it was completely gone after treatment with Femara. My breast tumor and node and other small spots in my lungs did not ever go away with Femara and Ibrance. When the first lung nodule dissolved a radiologist said those other small things in my lungs could be "junk," but others who see those small spots assume they are mets.

    I appreciate everyone's thoughts and inputs here. I am trying to be prepared for the next time I can speak to the MO and hopefully have clear communication. I hope to advocate for the best choice.

  • cure-ious
    cure-ious Member Posts: 2,891

    yeah, none of that sounds IV chemo-worthy- I'd go with SP and get that second opinion

  • vbishop
    vbishop Member Posts: 332

    Ibrance/Faslodex did nothing fir me. From there we moved on to Erubilin (sp) which worked for a bit. Moved to Gemzar, that did nothing. I am now on something similar to Taxol. I have a PET on 4/7 so we will see if this one is working. I suspect it isnt. Sigh ...

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900

    I have also wondered what is next, if anything, after Ibrance. Currently taking Afinitor and Exestemane. Immunotherapy was mentioned since I have (15%?) PDL1. Radiation and chemo also mentioned. Had an angio-thorax CT Friday because I had been experiencing increasing shortness of breath. The person who did the CT, told me a radiologist had looked at the image and wanted me to go to the ER right away. Well, they sucked out 1 1/2 liters of fluid from the chest cavity (not lungs), clots are also suspected, and put me on a blood thinner. Swelling in arm is way down and some of the redness is also fading, so, maybe blood clots were a big part of the problem all along as well as the lymphedema?

  • sandibeach57
    sandibeach57 Member Posts: 1,387

    Vbishop, any bx tissue sent for genomics and also checked if any change to your hormone status? Maybe to see if there are targeted txs or clinical trial options.

  • sandibeach57
    sandibeach57 Member Posts: 1,387

    BlueGirl..

    Do you have visceral mets? Was Xeloda an option following AA? What was your latest results from tissue bx? You should be checking your hormonal status and genomics.