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Ibrance Users greater than 24 months

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  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2018
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    EV11, you make valid points with investigating the next treatment. I especially appreciated the insight about holding off Faslodex if it can get you in future trials that will use this antiestrogen with potential future combos. This info will help with discussions with my MO and to provide more perspective in my own research. Thank you.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2018
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    Hi. Starting cycle #24 Ibrance 100 mg/ Letrozole. I just keep plugging along cycle to cycle. Apparently, the median PFS on this combo is now 27.6 months with bone mets only median PFS at 36.2 months. There is speculation that Ibrance / Faslodex combo is longer..data should be forthcoming, hopefully, at Dec San Antonio Conf.

  • skyfly
    skyfly Member Posts: 66
    edited October 2018
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    if ibrance/faslodex lasts longer, why is the de facto first line treatment letrozole? Do people switch to faslodex as a second treatment

  • cure-ious
    cure-ious Member Posts: 2,735
    edited October 2018
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    Skyfly- We may not learn anytime soon whether Faslodex-Ibrance would go longer than Femara-Ibrance, because the trial that was done with Faslodex took patients who were at a later stage and had more treatments, including endocrine-resistant patients, than did the Femara trials.

    But it does not matter, its the total time one gets on an anti-estrogen treatment of any type that matters. And the cancer can mutate so that the estrogen receptor is turning on genes even without estrogen- in those cases, the AIs like Femara don't work anymore, what only works is Faslodex, which acts by degrading the estrogen receptor. So it makes sense in many cases to keep it in the order of AI before Faslodex; if the cancer is already resistant to AIs, then they go to Faslodex.

    A bunch of new SERDS (estrogen receptor degrading compounds) are in clinical trials where the hope is that they will work even better than Faslodex. Because they are oral (pills) rather than a shot, you can give them at higher levels and they may go stronger and longer.

    PS We might hear at San Antonio whether the PFS for Femara-Ibrance is even longer than has been reported previously; ie. the benefit numbers are not "fixed" until all of the patients on the original trial have progressed and moved on, the numbers reported initially wil get incrementally better as the longest responders weigh in, and push the averages up..


  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2018
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    Cure-ious, you continue to impress me. Thank you for the information and explanation and I am grateful that you share your knowledge.

  • skyfly
    skyfly Member Posts: 66
    edited October 2018
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    Cure-ious you are really amazing! I have never held a cyber friend in higher esteem.

  • GG27
    GG27 Member Posts: 1,308
    edited October 2018
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    I just went off the Ibrance/Femera trial due to progression. I was on it for 30 cycles. At my cancer centre, there were 29 of us on the trial, I was the third last on it, meaning 27 of us had progression. The combo was keeping my bone mets & retinal mets stable, but apparently allowed a liver lesion to begin.

    I am now going onto the Alpelisib and Fulvestrant trial. Hope it works for all of you for a long time.

    cheers, dee

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2018
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    GG27..hoping for a similar long run on your Alpelisib/Fulvestrant trial. Thank you for posting this info.

  • skyfly
    skyfly Member Posts: 66
    edited October 2018
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    GG27, best of luck with your next line of treatment. May I ask your reasoning in picking a trial for your second line treatment? Is it harder to get into them after you’ve had several treatments? I feel like I read that elsewhere on the boards.

    I’m a pessimist and an over-thinker haha, so I’ve already started investigating some of this stuff and I have lots of questions about the clinical trial world.
  • GG27
    GG27 Member Posts: 1,308
    edited October 2018
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    Skyfly,

    My MO recommended me for another trial. she felt this was my best option, her words were " when I heard about this trial, I knew I had the perfect patient for it" I've actually done 3 trials already, 2 of which I receive no benefit but go towards research for MBC, so how could I say no? :)

    Also, you must the P1KCA3 mutation to qualify and have progession from first line immediately prior. I don't mind the extra screening or the travel. I love my MO, she & I are exactly in sync so I trust her implicitly.

    cheers, dee

  • Daniel86
    Daniel86 Member Posts: 207
    edited November 2018
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    Just FYI, last night somebody on the Bone Mets Facebook group posted that she has been on Ibrance+Faslodex for 50 cycles and she is still going 😀

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited November 2018
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    Daniel86..you just made my day!

  • JuicyFruit
    JuicyFruit Member Posts: 3
    edited November 2018
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    Thank you for starting this thread. I’m just past cycle 23 - 100 mg Ibrance + letrozole, Mets to spine, liver, chest. Feeling pretty good, main problem is fatigue. Nearing the 24 month PFS, now 27 month PFS (yeah) and madly googling to try to predict what comes next. Nice to hear about those of you that continue on

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited November 2018
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    Hi JuicyFruit.

    I am on cycle 25 of Letrozole/Ibrance 100. I started this combo Jan 2017.

    My measurable liver mets are still inactive (from CT scans) and with each cycle, I become a little more apprehensive.

    But who is to say that maybe for once we will be the ones that shift the median PFS for visceral and bone mets and provide encouragement to many others.



  • perky2020
    perky2020 Member Posts: 72
    edited November 2018
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    I am on cycle 23, largest mets on ribcage NEAD yay! Other smaller ones "sprinkled" along the spine stable. Yay! Started at 125 and dropped to 100 in August to see if it helped with fatigue. Added increasing water to 100-120oz per day and feel a significant improvement in energy. Double yay!

    Dee, what cancer centre do you go to? Seems they are very active with trials. While I love my oncologist I have been thinking I should establish a relationship with one directly affiliated with NCI

  • cure-ious
    cure-ious Member Posts: 2,735
    edited November 2018
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    regarding those PFS numbers, a lot of people drop out shortly after treatment as it gradually becomes clear the combo isn't working, or they are already endocrine-resistant. That 24/27 month PFS average includes all of those- so like an actuarial table, those of you who already made it out a year or two will most likely be longer. Someone (was it Getta?) said in looking at the charts, if you made it to year two, your odds of making it to year four are actually higher than they were for making it to year two at the time you started, if that makes sense...

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited November 2018
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    thank you for this thread!

    I am on cycle 16 100mg of Ibrance (and letrazole) currently NEAD and had lit up like an Xmas tree with bone Mets to whole spine, scapula, pelvis.

    I started to see change in breast (was very “taught” at diagnosis) where the tissue began to relax at about 6 months?? And at 6 months my scans showed incredible healing happening to tumors in bones and breast.

    Here is to upping the PFS median!!!

  • GG27
    GG27 Member Posts: 1,308
    edited November 2018
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    Perky2020,

    I am in Canada at the BC Cancer Agency in Vancouver. I have to travel to get into most of these trials, as they are only in large centres.

    I did not do well on this last trial & have been taken off the study drug but may be able to stay on the trial & get fulvestrant.

    cheers, dee

  • bailey5
    bailey5 Member Posts: 27
    edited December 2018
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    hi I’m on Ibrance/Femara since 11/14/17; I’m sorry I never counted the # cycles; but I estimate=starting cycle 16 or 17. I’m bit confused if new average is 27.4 is that in months or cycles? I’m actually having LUQ x 2 weeks & now RUQ pain x 1 week & must call docs tomorrow regarding this; it is lateral and burning/stabbing nature; I think it started as intermittent/colicky—but now feels like it’s constant and chronic. I have achy body throughout and chronic Rt neck arthritic pain; but these pains in my abdomen are different; bowels are movingBest to all!


  • jensgotthis
    jensgotthis Member Posts: 671
    edited December 2018
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    I’m about to start round 27, I think, and feel good other than the fatigue. My scans have been stable with nothing lighting up for about a year so I have the option to go to every 6 months.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited December 2018
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    Hello Bailey5, the median PFS is reported in months. I am on my 23rd month and have started cycle 26.

    I am sorry to hear you have pain and glad you are seeking medical advice.

    Below is attached the thread for Ibrance just in case there are others who have similar abdominal pain that you are describing.

    https://community.breastcancer.org/forum/8/topics/...


  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited December 2018
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    Cure-ious was kind enough to provide this link on the updated PFS info of paloma-2 trial at SABCS 2017. I have not seen further updated results from the recent 2018 SABCS.

    https://www.practiceupdate.com/content/sabcsnbsp20...

    Edited to add that you can join as guest.

  • micmel
    micmel Member Posts: 9,866
    edited December 2018
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    I just started my 25th month of ibrance and have been in remission for two years on this glorious medicine. I am going to ride this train until I can't anymore. My markers are so low I am hoping. To continue! Scan and bloodwork done at end of November so.... three months more bloodwork and scan another six months! I hope everyone sees such success with this medicine. I really really do. ~M~

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited January 2019
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    Officially 24+ months on Ibrance..started cycle 27! I will have a liver MRI at the end of January instead of usual bone and CT scans. I am not expecting any problems, my MO wants a better look at 2 cysts near healed liver lesions.

    So..continue your magic Letrozole and Ibrance as I would like to reach and go beyond the Ibrance median progression free survival of 27.6 months (bone mets only median PFS is 36.2 months).

  • intolight
    intolight Member Posts: 2,138
    edited January 2019
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    SandiBeach, great news! I join you in hoping to go beyond the median. I am on month 32. I originally had both bone and liver mets so I am doing well. I had a slight uptake in one bone met last scan, so hoping my next scan next month shows it was only a flare. (I had many tumors so only one is good.) Onward!!!

    Chris

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited January 2019
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    Hi! I am about to start month 26, cycle 28 of Ibrance/Letrozole. Just wanted to give encouragement to others that it can be possible.

    I have been on 100mg the whole time, except the first month at 125mg..platelets and ANC were too low.

    For those with Ibrance questions regarding side effects and dosing, please check out the Ibrance topic linked below.

    These are amazing folks providing great support!

    https://community.breastcancer.org/forum/8/topics/...

  • Vilma65
    Vilma65 Member Posts: 69
    edited February 2019
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    ThumbsUp

  • Janice54
    Janice54 Member Posts: 23
    edited February 2019
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    I was on femera and Ibrance for 4 1/2 years. With no side effects.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited February 2019
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    Hi Janice54! Your post about long use of Ibrance and Letrozole is very inspiring to us who want to follow that same pattern. Thank you.

    I feel fine on this combo..you know, the new normal fine. But I am perfectly happy just still being "here".

    When I progress, I have already spoke with my MO about staying on Ibrance and changing to Faslodex. So maybe I can squeeze in more Ibrance time.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited March 2019
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    Today, I start month 27, cycle 29 on Ibrance 100mg/ Letrozole. Anyone else still on Ibrance with liver or organ/visceral mets?

    I will check for any updates on Paloma II trial, but the last data showed 27.6 months for median PFS for visceral mets and 36.2 months for median PFS for bone mets only. I think I got that right..