Fulvestrant and Ibrance

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Charlotte46
Charlotte46 Member Posts: 8

Hi,


After being diagnosed with bone Mets in 2015 Femera and Ibrance(for 1 year) and then just Femara (for two more years) my oncologist gave me news this week that Femara was no longer working based on tumor markers rising and Pet scan results even though my CT remained stable. I was given 3 options of new treatment including ; adding back in ibrance to Femara again, doing Fulvestrant or doing fulvestrant with Ibrance. Anyone have thoughts on those treatment options? Anyone have insight on the injectin of fulvestrant and the other side affects? I’d love to hear.


Char

Comments

  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited October 2018

    Hi Char, I would be interested, too. My MO and I already discussed that Faslodex would be my next line. But we haven't discussed if I would continue on Ibrance or go solo with Faslodex or even change it up to Fas and Versenio.

    Anyone else's thoughts?

  • pajim
    pajim Member Posts: 2,785
    edited October 2018

    Ladies, first things first. You can find all about fulvestrant in the Faslodex Girls 2014 thread. The first few posts give you the tips and tricks and normal side-effects. You already know the side effects of Ibrance.

    I did letrozole plus fulvestrant for three years. When the TMs started climbing we added Ibrance. It boosted the other two drugs for another year. So it does seem to help.

    So you could do any of the three options Charlotte was given.

    I wouldn't switch to Verzenio. I'd save it. It works a little differently so may be another hormonal option down the road. I AM actually doing Verzenio and Ibrance after a year on Xeloda. Normally one wouldn't go back to hormonals but we decided to give it a try. It seems to be working. Not really sure yet -- I'll know more at my next appointment. And it probably won't last long but I'll take it over iv chemo.

    Here's my philosophy on how to choose a next line. This may not twin with your views or your doctor's views, but here it is for what it's worth. Stall, stall, stall. Once you're done with a treatment generally you're done with it. So don't stop until you really have to.

    I would do either "add Ibrance to letrozole" or "Fulvestrant alone". Then when fulvestrant alone starts looking dicey, add Ibrance with the hope of extending the use the fulvestrant. The overall survival studies on palbociclib, ribocilcib and abemaciclib are starting to come out. They are extending survival.

    Making these decisions is really hard. What is right for you may not be right for others. Some women want to hit the cancer hard. others want to do the least they can do (raising my hand here -- I hate side effects). The second part of my philosophy on picking treatments is not to look back. Don't second-guess yourself. Except. Make the decision the night before you tell the doc and sleep on it. If you're stomach hates you in the morning maybe you need to re-think.

    Wishing you the best of luck, whatever you decide.

  • funthing42
    funthing42 Member Posts: 418
    edited November 2018

    Hi

    Just wondering what to expect next.

    They told me immunotherapy is not for me only triple neg breast ca. Than gave some 5% effective statistic statement. Told me I didn't have 30 days to figure out trials etc.

    They are ready to give chemo again. Abraxane?

    Ibrance and fasoldex gave me 2 years remission.

    Tumors shrunk to nothing markers normal.

    I do lupron also.

    I was told my markers went up.

    Hx below I don't have time to figure out whats going to work.

    Liver 3 large 1 small

    4cm largest

    x 6/1/2009, IDC, <1cm, Grade 2, ER+/PR+, HER2-

    Hormonal Therapy 6/5/2009 Arimidex (anastrozole)

    Surgery 6/5/2009 Lumpectomy: RightRadiation Therapy 8/1/2009 Whole-breast: BreastHormonal Therapy 11/1/2009 Arimidex (anastrozole)

    Dx 11/1/2013, IDC, 1cm, Stage IA, Grade 2, ER+/PR-, HER2+

    Surgery 1/1/2014 Mastectomy: Right; Prophylactic mastectomy: Left

    Targeted Therapy 2/1/2014 Herceptin (trastuzumab)

    Chemotherapy ,Carboplatin (Paraplatin), Taxotere (docetaxel)

    Dx 10/1/2014, IDC, <1cm, ER+/PR-, HER2-Hormonal Therapy 11/1/2014 Aromasin (exemestane)

    Skin mets Sept 2015

    3/2016, IDC, Right, ER+, HER2-Metastatic treatmentTypeExternalSiteChest wall radiation was finished . Pet scan then revealed left lymph node involvement. Her2- estrogen + progesterone-

    Ibrance and fasoldex 2yrs

    It shrunk to nothing markers normal no Ca.

    But now on

    10.10.18 markers up

    Liver mets

    I just hope I have options and Im wondering why Onc is pushing for Abraxane only. So confused. I wish I could just go off then back on Ibrance. It worked like a miracle. 

    Treatments so differently for everyone.

  • skyfly
    skyfly Member Posts: 85
    edited November 2018

    funthing42,


    I’m sure someone more informed than me will come along soon with a more definitive answer but I will try to give my .02 cents based on what I’ve read around here.

    From what I read, most people try to get as much distance from hormone therapy as they can because they’re easier on your body. Idk if you’ve had further biopsies that suggest your hormone receptor status has changed, but that would be a reason to move to another treatment. I also read that chemo is more effective for visceral metastases than hormone therapy so maybe your MO wants to blast the liver mets. There are a lot of factors that could be governing their decision making, but they should definitely be explaining it to you as thoroughly as you want! I don’t like that they’re not informing you, thats a big part of an oncologist’s job in my opinion.

    Most insurance plans, including Medicaid, will cover a 2nd opinion for BC. Someone on the boards suggested finding an oncologist at a research hospital, since they will be more plugged into trials that are going on if that’s what you’re interested in. But I know a lot of folks don’t live near a big university hospital and any second set of eyes would probably be good.

    I don’t think it’s true that immunotherapy trials are ONLY for triple negatives, although I think they tend to be the most responsive. This was the first questions I asked on the board.
  • FloridaRN
    FloridaRN Member Posts: 3
    edited November 2018

    Hi,  I was dx. with mets. in 2015.  I started on the Ibrance Letrozole combo. and went into remission. This month found out I was no longer in remission. My doctor kept the Ibrance and switched the Letrozole to Falsodex.  I have had one injection so far.  I am tolerating it well. To soon to say if it is working.  But, it was my doctors first choice and he has been on point with everything so far. 

  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited November 2018

    Hi FloridaRN. When I progress, I think I will be doing the same as you..Faslodex and continue the Ibrance.

  • Charlotte46
    Charlotte46 Member Posts: 8
    edited November 2018

    Hi Pijam,

    Thank you for the kind response and helpful information. I am trying to get clarification from my doctor, but I am having trouble understanding why if the femara was not working that could still be an option to take with the ibrance. You would think if the femara was not working what would the benefit of taking it with the ibrance be? Any thoughts on that? I like your thinking about not burning through options. Super helpful

  • Charlotte46
    Charlotte46 Member Posts: 8
    edited November 2018

    Hi Pijam,

    Thank you for the kind response and helpful information. I am trying to get clarification from my doctor, but I am having trouble understanding why if the femara was not working that could still be an option to take with the ibrance. You would think if the femara was not working what would the benefit of taking it with the ibrance be? Any thoughts on that? I like your thinking about not burning through options. Super helpful

  • Charlotte46
    Charlotte46 Member Posts: 8
    edited November 2018

    Hi Florida RN,

    Thank you for the information. So you were able to stay on the ibrance when the ibrance and femara stopped working and switched to the falsodex with the Ibrance? I am struggling with if I just add the ibrance in with the femara again or do the ibrance and falsodex. I’m glad to hear the injection went well for you so far! FANTASTIC!

  • pajim
    pajim Member Posts: 2,785
    edited November 2018

    Charlotte, in my experience Ibrance is a booster. I added it on when Femara/Faslodex (the combo I was on) started to fail. Ibrance made it last a whole year longer.

    Ibrance doesn't really seem to work by itself. It boosts the hormonal treatments. Verzenio does, in theory, work on it's own but I'm still taking it with Faslodex. Better safe than sorry.

  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited November 2018

    FloridaRN, I do think the trials with Faslodex and Ibrance gave longer PFS than any other secondline that has been tested so far, although none were head-to-head trials, so we have to infer what to do. When you had progression on Ibrance-Femara, did the cancer also change location, eg move to liver? And if so, did your ONC do any genetic testing? Because obviously if it changed subtype it would be important to know that as well

  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited November 2018

    Pajim, How are you doing?!!

  • Charlotte46
    Charlotte46 Member Posts: 8
    edited November 2018

    Hi cure-ious,

    My tumor markers were rising for a few months and starting to have increased pain. I had a Pet scan and CT scan done. (When the cancer came back with the diagnosis of stage 4 I had a tumor on my chest that disappeared with radiation and the initial treatment of femara and ibrance along with having multiple bone Mets). The oncologist said that the bone Mets were more active now but there were no new locations. I got some additional clarification today from the doctor after waiting for the last week for answers to some questions and much back and forth. I was told that if I choose to go the treatment route of adding back in the ibrance with femara that once that stops working I would be done with ibrance and could not pair it with the fulvestrant. The oncologist recommended doing a switch to Fulvestrant and ibrance so that is the course I am headed down. Always a little anxiety provoking to switch meds but I am putting positive thoughts out there.

  • pajim
    pajim Member Posts: 2,785
    edited November 2018

    Charlotte, that seems an entirely reasonable thing to do. I hope it works well for you.

    Cure-ious, you mean on abemaciclib and fulvestrant? What I say when someone asks is "it's not NOT working". TMs have stopped rising though they are not falling. Scans in a month to see what is happening but we all suspect they'll say 'stable'. SIde-effects-wise I have a little diarrhea but no other problems. I'd be happy to stay on this stuff for as long as possible. I'm trying for next summer when the IMU032 Phase 3 trial will open up. One month at a time. . .

  • Chemokaze
    Chemokaze Member Posts: 208
    edited November 2018

    Hi Pajim,

    What is that trial about?

  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited November 2018

    Pajim- Ditto to Chemokaze's question, and yeah! to Abemaciclib, its the strongest of the CDK4,6 inhibitors. It seems like it worked well for you to have the break (Xeloda) between the anti-hormonal treatments, and now you want to try immunotherapy?

  • pajim
    pajim Member Posts: 2,785
    edited November 2018

    Some MOs are willing to try hormonals again and some aren't. I have a friend whose MO wouldn't even consider it. Mine said "well, it's been a year so you might be resensitized to estrogen. Who knows? We can try. The thing is that he knows I like to work. So he's made it his mission in life to keep me at my desk as long as I wish. And I appreciate that.

    Here's the Phase II for IMMU-132. it's not exactly immunotherapy but a drug conjugate. Word on the street is it works pretty well but the side-effects are ugly. That part wasn't mentioned when i heard about it the first time so I might change my mind.

    https://clinicaltrials.gov/ct2/show/NCT01631552?te...

  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited November 2018

    Pajim, Do you know that you have to change treatments already, or are you just getting ready in case? The treatment you are on seems a good choice because the Abemaciclib could be working on its own (ie even if the faslodex doesn't work). Below is a link to a study of IMMU-132 on TNBC, though you've probably already seen it- they got a great response and it went to FDA fast-track, but this was with patients averaging five prior therapies, so it seems like this might be a better drug to use later, no? You are almost six years out (!!!) and maybe still bone-only (?) and have not tried the new PI3K inhibitor (Alpelisib) or mTOR inhibitor (Affinitor), what if your next biopsy shows the PI3KCA mutation? Because if that is the cause of endocrine resistance, then pushing down the Pi3K/mTOR pathway can make the cancer cells become estrogen-dependent again, and you stay away from the chemos for longer...

    PS- I laugh when they report "acceptable safety profile"-- acceptable to WHO?!

    http://cancerres.aacrjournals.org/content/78/4_Sup...
  • pajim
    pajim Member Posts: 2,785
    edited November 2018

    I like to plan ahead. My TMs aren't falling but not rising so this is holding me stable but unlikely for very long. Every other new regimen I've had the TMs drop like a stone. I do have a single liver lesion (discovered this summer) -- hopefully getting smaller as we speak.

    [Yes I've had Afinitor and so far I don't own the PI3KCA mutation though maybe a new biopsy. . .]

    I feel that I'm on borrowed time. Last summer I signed consent for a Halaven +- Keytruda trial. I was gonna do it -- iv chemo at last. And I'd mentally geared up for it. But then I failed the screen. I got pneumonitis in the there months I was on Afinitor which barred me from the Keytruda trial. They SOOO want their drug to look good that they won't include anyone who has had any immune reaction to anything. Grrrr.

    So lo! I dodged the bullet! Or at least that's how it feels. With that in the back of my mind it's hard to believe in the current regimen. I have scans in three weeks. For the first time in many years I expect to have scanxiety. Hoping hoping nothing is getting worse.

    Don't get me wrong -- I'm happy to take this as long as I can. It's just that I can't believe I'll get a year out of it. When I started Madam X the TMs tanked. I thought I'd be on it for years and years. Am I playing mind games with myself? I need to get on the road and get my mind off being a cancer patient.

  • pajim
    pajim Member Posts: 2,785
    edited November 2018

    Second reply as a rant against two phrases:

    "Acceptable safety profile" & "Generally well-tolerated"

    As you say. . .TO WHOM?? BY WHOM?? Actually probably by some people, to be fair. But these are judgment calls by people who aren't taking the drug!! And it's hysterical what drug companies think their patients were happy with. These are marketing terms, not medical terms!!!

    Let me tell you a story. I work at a medical journal and one of the things I do is to attend the manuscript meetings. Recently our two oncologists were discussing the merits of Faslodex vs Ibrance. Let's just say that these are men of a certain age. Those two have no idea that they have an MBC patient in their midst. They're stating firmly that Ibrance is better because it's oral and the other is a shot. I soooo wanted to tell them they were full of s---. You have to go into the cancer center every four weeks anyway, Ibrance tanks your neutrophils causing fatigue and infections, grrrr. and you have to remember to take it every day instead of forgetting you're a cancer patient for four whole weeks. Meanwhile the few folks in the room who do know are wondering why I don't have anything to say. It just wasn't worth coming out of the closet.

    Luckily my boss hates both those terms and edits them out of any paper we publish.

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