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Success after Ibrance/Faslodex Failure

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LVGirl903
LVGirl903 Member Posts: 12

Hi everyone. I’ve been a lurker here, but never posted. Having a bit of a bad day, and looking for a little hope.


I was on Ibrance and Letrozole for about 15 months and it was very effective. After scans at the end of January, progression was suspected, but not 100% confirmed. I switched to Ibrance and Faslodex for 3 months and re-scanned last week. I just found out today that it has definitely spread. The small spots in my right lung (only previous areas of involvement) have grown, and now there’s a lymph node near my stomach involved.

I will be switching to Xeloda.

I’m looking for stories of anyone who has done well in the long term after failing on Ibrance and letrozole and/or Ibrance and Faslodex. I’m usually a very optimistic person, but I’m having a hard time with this right now.

If it makes a difference, I’m 35, stage IV since 09/18, ER+, HER2-.

Comments

  • aprilgirl1
    aprilgirl1 Member Posts: 768
    edited May 2020
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    Hi LVGirl903 - I saw your post and see that you are new to BC.org. I am sorry you are having a bad day :/ I am just posting to welcome you to BC.org and suggest you might post on the Xeloda thread.

    You will find support there from others on Xeloda and might find some that have moved on from Ibrance. Hang in there! Sending you virtual hugs.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited May 2020
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  • JFL
    JFL Member Posts: 1,373
    edited May 2020
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    Hi LV. I am sorry to hear about your progression. It is certainly scary to fail especially when we hope that first treatment will last for years and years. I started on Aromasin/Faslodex/Ibrance in 2014 which worked for 15 months. When I progressed, my liver was 70% mets. I took Xeloda after that and the mets were completely inactive and shrinking by my first 3 month PET scan. I lasted about 14 months on Xeloda. I have progressed many times but still here over 5 years later. When I was first diagnosed in 2014, I had extensive bone, liver and subclavian lymph node mets and was in really bad shape requiring hospitalization for weeks. Over the last 5+ years, I have never been as bad as I was at diagnosis nor as bad as my liver was when I failed Ibrance. Although not ideal, there is still some hope for those who progress.

  • LVGirl903
    LVGirl903 Member Posts: 12
    edited May 2020
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    thank you, everyone, for your responses. JFL- you are just the person I was looking for, I think. That was just what I needed to hear to feel like I’ve got this. Thank you for inspiring me. I’m feeling renewed and ready to tell this thing to go eff itself.

  • cure-ious
    cure-ious Member Posts: 2,745
    edited May 2020
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    LVGirl,

    JFL has the best advice!! I'd add to make sure you get a new biopsy and a second opinion at this juncture. You feel like its urgent to jump on the next thing, but take time to make sure its the best option.

    The story of Barbara Bigelow is instructive for this. She had ER-positive MBC and progressed rather quickly. In fact, the cancer had mutated to ER-negative, but for some reasons the biopsy was delayed or didn't have enough sample or something, and she went onto a trial- after a year of basically non-effective therapy, the biopsy was straightened out and it was clear she needed treatment for ER-negative disease. She went into a trial with immunotherapy and chemotherapy, had a terrible sepsis cytokine storm of her immune system, but survived and today the cancer appears to be completely finished, she takes nothing for it. She was diagnosed with mets in 2015, and is now cancer free for like two years. And studies are showing that cancers which were originally ER-positive and then mutated like that to ER-negative respond very strongly to immunotherapy.

    So all said, take the time needed to be sure you are heading on the right road.

  • LVGirl903
    LVGirl903 Member Posts: 12
    edited May 2020
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    Cure-ious, wow! Thank you for that info about Barbara Bigelow. I just looked her up. What a story!


    I'm actually being treated at the same place that she was/is. It's possible we even have the same doctor- who knows! I trust my team there implicitly, and their plan is to do another liquid biopsy (Just did one a couple of months ago with unremarkable results) after Xeloda to check and see whether anything has changed, and plan our next move. It's encouraging to here that immunotherapy can be effective if ER status does at some point change.

  • Linda11111111
    Linda11111111 Member Posts: 28
    edited May 2020
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    Hi LVgirl903!

    Sorry you're dealing with progression. Always stressful. Hoping it helps a bit to know I had nearly a 5 year run on Xeloda and, all in all, really my life stayed pretty normal. I wish the same for you. If you have any trouble getting the pills (I did with my insurance taking forever) I have a few bottles left over from when I had an occasional cycle off.

  • LVGirl903
    LVGirl903 Member Posts: 12
    edited May 2020
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    THANK YOU, Linda! Another nearly 5 year story! This is exactly what I was hoping to find by coming here. I so appreciate your (and everyone’s) support and encouragement. I hope you’re still doing well

  • Linda11111111
    Linda11111111 Member Posts: 28
    edited May 2020
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    Thanks, LVGirl903. I am doing great! Had small amount of progression back in January and am now taking Ibrance & Arimidex with no noticeable side effects. The blood work is wacky so I know there actually is Ibrance in the capsules! My first scans since Ibrance will be at the end of the month. Am totally expecting to get a good period of time out of Ibrance, too.

  • JFL
    JFL Member Posts: 1,373
    edited May 2020
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    Cure-ious, do you know what experimental therapy Barbara Bigelow took? I wasn't aware of her story until now, although her name is familiar to me. The articles that I read don't specify which drug combo was given in the trial.

    Interesting what you say about ER positive who turn ER negative having good outcomes. That is the same profile as Judy Perkins, who is also considered “cured" or at least in a very durable, long-term remission after participating in the NCI's tumor infiltrating lymphocytes (TIL) trial. She chose to give the trial a shot before going into hospice and here she is, many years later, on no treatment.

  • cure-ious
    cure-ious Member Posts: 2,745
    edited May 2020
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    Hi JFL- Oh, I didn't realize that Judy Perkins was also a "converter"! Well, dang, that's a bit of a bummer, because obviously that is rare, so maybe it explains why they haven't had lots of women replicate her success using CAR-T.

    The numbers I saw were that those going from ER-positive to ER-negative had a 50% success rate with immunotherapy- if that number holds among large groups it is a big number, I think that is maybe higher than lung cancer, at least its on the same order.

    For comparison, ER-negatives are about 15%, ER-positive are 5-6% responders.

    Good news is knowing this, researchers are for sure sciencing the crap out of these cells to try to figure out what pathways got turned up, why are these cells special, etc? Are there drugs we can give ER-positive or ER-negative cells to make them respond to immunmotherapy the same way converters do?

    For Bigelow, I gravitated to her blog as she was diagnosed just a few months before I was, so I was following along closely- then the story took all those twists and turns and I had to steel myself sometimes before checking in, not knowing if the outcome would be OK but somehow always felt sure she would do OK, must be her style of writing, her confidence.

    She moved into a trial with some kind of immunotherapy-chemotherapy combo, had a severe immune reaction and nearly died, but coming out of it the cancer was all gone. Cancer cells grow faster than normal ones and take over like weeds, however they are more fragile to stress than normal cells, so her fevers and hyper-stimulated immune system took care of them all. All the details are here

    www.barbbigwire.com

    And here is an interview:

    https://www.cancernetwork.com/article/barbara-bige...


  • cure-ious
    cure-ious Member Posts: 2,745
    edited May 2020
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    Also, checking on conversion rates- in one study about 20% of ER-positives converted to ER-negative (more common was that nearly 40% PR-positive converted to PR-negative). A fortunate 10% saw their cancer go from HER2-negative to HER2-positive. So most cancers dont change but its somewhat more likely one would move to ER-negative than to HER2-positive.

  • barbigwire
    barbigwire Member Posts: 4
    edited August 2020
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    I was treated with Pembrolizumab and Erubilin. I have not had any treatment for cancer in 4.5 years and I am still NEAD.

  • cure-ious
    cure-ious Member Posts: 2,745
    edited August 2020
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    Barbigwire,

    So thrilled to have you posting!! I never thought to look if you were a member of this site.

    Do you have any insights as to why you are such an exceptional responder?

    Do you ever get scanxiety anymore?