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Ibrance Users greater than 24 months

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sandibeach57
sandibeach57 Member Posts: 1,387

How many of us have used Ibrance (plus an antiestrogen) greater than 24 months - even those who have moved on to next line of treatment.

Apparently, the median PFS on this combo is now 27.6 months. For bone mets only the median PFS at 36.2 months. Data is from the Paloma 2 trial.

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Comments

  • chico
    chico Member Posts: 194
    edited September 2018
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    I am starting cycle 27 I/L plus Xgeva for very extensive bone mets next week. Dx 2016 so this is my first line of treatment. Primary Dx 2004

  • chicagoan
    chicagoan Member Posts: 1,011
    edited September 2018
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    I start Cycle 26 this Friday. I still feel good so I hope the Ibrance is still working! I too started with extensive bone mets and pleural fluid. This is my first line of treatment since I was Stage 4 de novo.

  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited September 2018
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    I just finished cycle 41 today. Still stable. This is my first line treatment. I have mets in almost every bone in my body.
  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2018
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    I was hoping for positive feedback as I move closer to the 24th cycle of Ibrance 100/Letrozole! Thank you.

    I had to jump start with A/C to quickly kill the tumor cells in lung arterioles- the chemo also stabilzed my liver mets and a T12 met.

    It took 9 months on I/L to have no evidence of active disease. Side effects are tolerable.

  • EV11
    EV11 Member Posts: 86
    edited October 2018
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    I was on Ibrance/letrozole for 42 cycles-- the last 39 of them at 75 mg. We had a suspicion I might be having some progression (but no confirmation since my other-than-bone and bone marrow mets do not show up on any type of scans....they were only visualized during surgery (ovaries/peritoneum/omentum) and during a routine colonoscopy (inside my colon).)

    I was very torn about moving on, but I had a Guardant 360 liquid biopsy that showed a very small but apparently significant presence of an aggressive (and very unusual in MBC) EGFR exon 20 insertion. After talking with my onc and some researchers it seemed that the mutation might be the start of a resistance mechanism; so I switched to Xeloda a month ago.


    I/L was my first line treatment (along with periodic Zometa) for my de novo stage 4 pleomorphic lobular MBC -- diagnosed May 2015. I'm sad to be off it -- it was very tolerable for me. Am hoping that Xeloda is as effective and tolerable. Time will tell.

    I hope you all get great results for a VERY long time.

    Elizabeth

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2018
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    Hi EV11. Wow, it looks like you started Ibrance the year it was FDA approved and stayed on it beyond the supposive median time. Several of my liver mets online peers (both IDC and ILC) who started with me on Ibrance, moved on to Xeloda as next line. I wish you another long run.

  • chicagoan
    chicagoan Member Posts: 1,011
    edited October 2018
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    This is a question for those of us who have been on Ibrance for 24+ cycles: Did you have an immediate response to Ibrance? I did-it was very dramatic at first. Then on the Ibrance thread some people reported that you might not see any impact from Ibrance for six months. I wonder if there is a correlation between longevity on Ibrance and a rapid response. Maybe I am just hoping this is trueSmile

  • iwrite
    iwrite Member Posts: 746
    edited October 2018
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    Starting cycle 35 on Wednesday. I 75 plus Letrozole. First line...de novo to bones all over. Quick response. Next scans in November.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2018
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    Chicagoan, it took about 9 months to go from stable to NEAD. I know those cells are still there, but hoping to stay on I/L as long as possible.

    Iwrite..happy you are still on this 1st line with upcoming cycle 35.

  • cure-ious
    cure-ious Member Posts: 2,762
    edited October 2018
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    Hi Sandi! Heading for #39 next week, firstline, 125mg, and yikes, I'm now passed the median time to progression for bone-mets (36 months), geez, that went fast..

  • josgirl
    josgirl Member Posts: 61
    edited October 2018
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    I am just at 23 cycles. Brain and bone mets. Rapid response and tolerable side effects. Thanks for asking the question as I was wondering too (heard 2 years was the average Ibrance was effective) and need some good stories

  • 7of9
    7of9 Member Posts: 474
    edited October 2018
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    Great thread with lots of hope even for those not on Ibrance. Thanks for starting and the contributors.

  • jensgotthis
    jensgotthis Member Posts: 671
    edited October 2018
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    Just finishing up cycle 25 over here. I’m NEAD the past few scans. Just so happy to be stable

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2018
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    I love these Ibrance stories. EV11, thank you for posting..42 cycles before moving to Xeloda. Wow.

    Lynwood1960, close behind at 41 cycles. Cure-ious (#39 and Iwrite (#35).

    As I start cycle #24, this info will help those of us who have reached the median time of PFS and will give hope and comfort for those just starting.

    Sandibeach57


  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2018
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    For those who are current on most recent Pfizer research on Ibrance, is 24.8 months still the median for progression free survival (PFS)?

  • holmes13
    holmes13 Member Posts: 192
    edited October 2018
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    I am not past a year yet but as of last month (8 cycles) I am NEAD! I am hoping just like everyone else that this quick response means that I will have a long time on this combination.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2018
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    Yeah holmes13!!

    One month at a time. There are many of us that can stay on Ibrance and anti-estrogen for a long time. I wish the same for you.

  • jobur
    jobur Member Posts: 493
    edited October 2018
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    I've also been on Ibrance for 40+ cycles (lost count), with Faslodex. This is my 2nd line tx after failing anastrazole. Dx'd De Novo with bone mets throughout spine, NEAD since 12/15. SEs have definitely decreased over time. 

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2018
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    Jobur, I would like to lose count of my Ibrance cycles! Thank you for inspiring us. My MO said Faslodex will be next line for me, I assume with Ibrance.

  • intolight
    intolight Member Posts: 2,243
    edited October 2018
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    So happy to join this thread...I am on cycle 28. My last PET/CT scan, 3 weeks ago, showed a "subtle change" (intake up 2 tenths of a point) to 2 previous tumor sites, but other than that I have been NEAD since 9 months. We are watching closely hoping they will prove to be nothing. I have been on 125 mg since the beginning and tolerate it well. Some days I even feel good as long as I don't do anything too physical.

  • time-for-a-cure
    time-for-a-cure Member Posts: 67
    edited October 2018
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    I just started #42. Doing well. NED. My met was not typical, it was to the supracalvicuar node on the opposite side, I have worked my way down to 75mg and feel pretty good! Wishing you all a long time on this medication. Carpe Diem. Kitt

  • Daniel86
    Daniel86 Member Posts: 207
    edited October 2018
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    Ladies,

    did all of you guys see good results from using Ibrance within a few months? I am just wondering if there is a correlation between long term use/quick response. I am getting anxious as my wife's primary breast mass is still the same size as when she was first diagnosed back in March. Granted she had to interrupt Ibrance for a good whole month because of surgery to her met but it seems for most of you, it was a quick process.

    Daniel

  • intolight
    intolight Member Posts: 2,243
    edited October 2018
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    Daniel, I received the first positive news after 6 months. I have no idea if there is any correlation...

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2018
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    Daniel, I was stable after 3 months on AC (no progression and no regression). After 9 months of I/L, I became NEAD..it was very gradual. I don't know if there is a correlation between fast response and time on Ibrance (and antiestrogen). I have read comments on various threads that response can take time and not to get discouraged.

  • justg22
    justg22 Member Posts: 18
    edited October 2018
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    Hello....I have been on Ibrance/Letrozole for approx. 26 months.  No side effects and drugs appear to be working.  Last chest CT on September 2018 showed that two lung nodules were no longer visible and everything else remained unchanged and for that I am very thankful.  I follow a healthy diet and light exercise regimen.  No side effects, I just follow a 'business as usual' mindset.  I chose not to think about having cancer and unless someone else mentions it I don't think about it.  I believe that most of the small issues I have are with the Letrozole and by this I mean brittle nails and dry skin (could be because I am 51 yo though).  What has your experience been with this drug?  My pipe dream is that eventually I can get out of 'the system' and take a more natural route.  Hugs :)

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2018
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    GG22..that is wonderful that you are still on Ibrance/Letrozole for 26 months. I am behind you and feel most days okay. My body is trying to adapt to the cyclic low hemoglobin and low platelets.

    As far as your other questions, search for the topic "Ibrance", started by Romansma. The folks there are very helpful and are always willing to share their knowledge!

  • cure-ious
    cure-ious Member Posts: 2,762
    edited October 2018
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    Time-4-a-cure: Thanks, you are an inspiration!! Did you start Ibrance as part of a clinical trial, or just started taking as soon as it got approved? When was that? April 2015?

  • time-for-a-cure
    time-for-a-cure Member Posts: 67
    edited October 2018
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    curious - I started on it as soon as it came available. Yes, it was spring 2015. My doctors office keeps track of the cycles. I know I am very lucky.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2018
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    Hi. Cure-ious gave me permission to copy her post from the Ibrance thread. It looks like the Ibrance Letrozole folks have a newer PFS median of 27.6 months and bone only mets of 36.2 months.

    There is also thought that Faslodex and Ibrance is even a better combo, but no data to back up that statement. Look forward to the San Antonio conference for updated stats.

    Here it goes. Thanks Cure-ious.

    Cure-iousJoined: Dec 2015Posts: 744Latest activity:Oct 7, 2018

    Post a replyReport this Post

    Oct 5, 2018 08:36PM Cure-ious wrote:

    Wow- congratulations to everybody on their scans!!!

    For the newcomers, here is the updated statistics from the Ibrance-Femara (Paloma-2) clinical trial released last December at the San Antonio meeting, at that point was 3 years of follow up and the PFS overall for 444 patients taking Ibrance-Femara was 27.6 months (compared to 14.5 months on femara alone), and for the subset of patients with bone-only mets the PFS was 36.2 months (compared to 27.6 months with femara alone). Possibly these data will get updated this December at the next San Antonio meeting and reveal even higher PFS numbers, as they continue to follow the people who may still be taking the trial drugs- we know from a Rugo tweet that she has (at least one) patient(s) still on the Ibrance-Femara at five years.

    Here is the link: https://www.practiceupdate.com/content/sabcsnbsp20...

    Dx 10/2003, IDC, Stage IIB, ER+/PR+, HER2-Dx 7/2015, Stage IV, metastasized to bone, ER+/PR-, HER2-
  • EV11
    EV11 Member Posts: 86
    edited October 2018
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    Hello, all...

    First, I want to say how heartened I am to read all of your comments about your sustained response to Ibrance. It is so good to see so many positive, durable results.

    I also want to put a thought into your minds for when (hopefully LONG in the future) you have progression...my onc is a researcher and a PI for a number of clinical trials and after much discussion this summer--when we concluded I most likely was having bit of progression-- we decided that I would try Xeloda rather than fulvestrant as my second line treatment. There were a number of factors that tilted our decision in that direction:

    1. I have pleomeorphic lobular MBC--Luminal B, moderately high Ki67 (19%) and my mets are PR- (and we know from testing done this summer my colon and peritoneal mets are still 100% ER+ and no ESR1 has been mutation detected)...the pleomorphic subtype of lobular is typically more responsive to chemo than classical, Luminal A lobular, and so chemo should be effective.

    2. Exposure to Ibrance/letrozole for nearly 3 and half years has undoubtedly pressured some of my cancer cells to start to develop resistance mechanisms to evade anti-estrogen treatments. Removing the pressure on the ER before detectable resistance has developed might prevent resistance mechanisms from maturing and will possibly prolong the effectiveness of anti-ER meds (fulvestrant or an AI/other targeted med combo) in the future.

    3. There area number of interesting and potentially promising meds about to enter trials in the next year or so; some of them are immunotherapy trials which also seem a bit more promising for pleomorphic lobular than the usual ER+ MBC varieties--both ductal and classical lobular --and many of them will likely be in combo with fulvestrant. IF my non-detectable on scans mets should ever become visible on CT or MRI then I would have preserved fulvestrant and still be eligible for those trials, since I wouldn't have to worry about an exclusion for prior fulvestrant use.

    4. If I can't get into a trial it is highly unlikely that my strongly ER+ MBC would have developed ESR1 resistance while on Xeoda since I doidn't have an ESR mutation when I started Xeloda (we checked both via a Guardant 360 liquid biopsy and a tissue biopsy of colon mets discovered in late May) nor is it likey I would have lost ER+ and become TN, so it is expected that I could still rely on fulvestrant alone after progression on Xeloda.

    I am NOT promoting this as a better or recommended treatment after progression on Ibrance, but rather to use my situation to illustrate that there are options beyond the standard, usual way of thinking about sequencing treatments. You don't have to automatically try fulvestrant next, and I encourage you have these kinds of thoughtful and individualized conversations with your oncologists on a regular basis, and especially when you are considering treatment options.

    May you all continue to have months and months and months of great response to Ibrance and I'd love to read of you joining the small group of 2 women (both initial PALOMA trial participants) who are well into year 4 of continued response. Here's hoping for a strong contingent of 5+ year responders in the near future!

    Elizabeth