Ibrance - progression free survival

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letmywifelive
letmywifelive Member Posts: 360
edited March 2016 in Clinical Trials, Research News, Podcasts, and Study Results

Hi all,

Looking for information from others on Ibrance + Femera regarding how much success they are getting from it and what are their Oncs telling about the effectiveness of this therapy.

My wife's cancer recently metastasized to her bones and Doctor has recommended her Ibrance + Femera combo therapy. She is ER+(95%),PR+(20%),HER2-. Originally diagnosed in Oct 2013 and went through regimens of chemo (AC+Taxol) + Rads. The she was onTamoxifen.

Thanks.


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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited March 2016

    Hi letmywifelive:

    There is a pretty active thread on Ibrance, and it looks like many also take Femara. Perhaps you can ask there:

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

    BarredOwl

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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited March 2016

    Hi letmywifelive,

    BarredOwl offered a great thread on Ibrance with Femara for you to follow.

    When in Forum 8, I encourage you to look at other threads related to metastatic and Stage IV breast cancer. It's quite an active place and invaluable for those of us dealing with the disease.

    Not only will you find treatment-based topics, but also topics dedicated to site of mets (bone, liver, lung, brain and other). There's lots to learn and share with one another there.

    I believe that caregivers may post questions and concerns in Forum 8, but there's another helpful forum for you all: A place where family members, caregivers, loved ones of Members having a Stage IV (metastatic) Diagnosis can talk, exchange and support one another.!

    For Family and Caregivers of Members with STAGE IV Diagnosis

    Many blessings for all of you as you seek and find appropriate medical care and care providers, Stephanie

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  • mike3121
    mike3121 Member Posts: 410
    edited March 2016

    Your post scares the life out of me because your wife's condition is almost like my wife. The AC, then rads. She was a bit different as not having taxol (bad allergic reaction to it). Also my wife had triple negative in her lymph nodes. She's NED for the last 6 months. Tamoxifen failed huh. That scares me as my wife is on it with few side effects. I read that taking common malaria pills with tamoxifen can restart the effectiveness of tamoxifen.

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  • letmywifelive
    letmywifelive Member Posts: 360
    edited March 2016

    Mike3121,

    Do not worry unless there is real evidence to get worried about. Every individual is different and with God's grace your wife will be disease free for many many years to come - if not forever.

    Do not ignore any sign or symptoms though that you find out of the ordinary. The doctors sometime do not get concerned but its your family that's getting affected, not theirs. Force them to do yearly scans, frequent blood tests, MRI etc. If things ever go for worse (cross fingers that it never does), catch it early.

    Also, have a second opinion doctor handy and for anything concerning, try to consult him / her.

    I am little confused about your wife was taking Tamoxifen when you found Triple negative in her lymph nodes. Tamoxifen is for ER/PR+ cancers. Can you explain a bit ?

    Anyways here is an excellent article from UCSF on Tamoxifen resistance and what they are doing to overcome it. https://www.ucsf.edu/news/2011/11/10939/scientists...

    Can you tell me more about malaria pills and where did you read about it ?

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  • letmywifelive
    letmywifelive Member Posts: 360
    edited March 2016

    Hi Longtermsurvivor,

    Thanks for your response. I am so glad that you could carry on 25 years with advanced disease. Can you please elaborate a bit on the holistic approaches you used.

    Thanks to you (and to BarredOwl) for the pointer to a very useful thread.

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  • mike3121
    mike3121 Member Posts: 410
    edited March 2016

    My wife diagnosed from the start as Stage 4 with mets to her spine. She had AC and her doctor recommended not to operate on the tumor in her breast as the aromasin seemed to have kept it in check. The mets to her spine went away from the AC chemo. Six months later her rather benign ER+ tumor went crazy. She had a mastectomy to remove the tumor. 19 lymph nodes were removed and 9 were found to have triple negative metaplastic squamous cell keratinized carcinoma. Life time amount of AC then weeks of rads cleaned up everything. She's on tamoxifen for her ER+ but they have nothing to keep in check triple negative cancer.

    I only mentioned that bit about the malaria pills as I've read about a couple studies. https://www.sciencedaily.com/releases/2014/06/140613084502.htm?

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  • letmywifelive
    letmywifelive Member Posts: 360
    edited March 2016

    mike3121,

    Very sorry to hear about your wife's case. My prayers are with you. I think though that her doctor should have removed the tumor as soon as part of her initial treatment. Cancer, as long as it is there, is only kept at check for a period of time. If a mass is visible and can be safely removed, it should be done.

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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited March 2016

    Hi LMWL,

    I wrote about my holistic health approach here:

    https://community.breastcancer.org/forum/79/topics...

    What I notice at that forum is that members are focused on ingested substances and a few supportive practices (exercise and diet chief among them).

    If I were just starting out, I'd be thrilled to find Kelly Turner's excellent book and study:

    Radical Remission: Surviving Cancer Against All Odds

    David Servan-Schrielber's AntiCancer: A New Way of Life is also an excellent basic text for exploring holistic options.

    I'd also investigate MBSR for healing. Elana Rosenbaum, a cancer survivor, has a couple of helpful books for those in treatment. There are many, many MBSR resources in the SF Bay Area.

    LMWL, it does sounds like you live in the SF Bay Area, as do I.

    There are many excellent holistic, integrative and CAM (complementary and alternative medicine) supports and practitioners here.

    The Osher Center at UCSF offers a wide variety of clinics and classes and offers team care.

    Commonweal's Cancer Help Program in Bolinas offers an outstanding weeklong program eight times annually and your wife and you can both attend. I've attended three times since 1992 and they've been fundamental in building my holistic approach. If you aren't up to traveling, can't wait or can't afford it, be sure to check out their audio/video library that covers the best of the best. You may find a clinician you'd like to consult (Dwight McKee, Mark Renneker, Keith Block and David Abrams come to mind). There are hundreds of recordings to choose from, so sort with the search options on the right side of the screen.

    LMWL, I hope this is helpful to you.

    My best medical advice is to seek the best medical advice and widen your field, if you aren't finding acceptable answers and supports.

    Wishing your wife and you the best possible outcomes and exciting and fulfilling experiences along the way.

    warmest healing wishes, Stephanie

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  • letmywifelive
    letmywifelive Member Posts: 360
    edited March 2016

    Here are some articles on Palbociclib (Ibrance)resistance in patients ;

    http://connect.ons.org/news-and-events/conferences...

    http://www.abstracts2view.com/sabcs15/view.php?nu=...

    Also a related clinical trial at UCSF : http://meetinglibrary.asco.org/content/127461-144


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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited March 2016

    Here are the links to clinical trial information:

    https://clinicaltrials.gov/ct2/show/NCT02088684

    https://clinicaltrials.gov/ct2/show/NCT01872260

    Healing regards, Stephanie

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  • letmywifelive
    letmywifelive Member Posts: 360
    edited March 2016

    We asked about NCT01872260 but was told it is for "naturally" postmenopausal women only - which my wife is not. She was given Lupron to shut down her ovaries. Any way we can make an appeal in such cases ?

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  • funthing42
    funthing42 Member Posts: 418
    edited March 2016

    Hi Just a quick chime in. I may be going on this med.

    I to am taking Lupron. I will let you know what find out in regards.

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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited March 2016

    Hi LMWL,

    If the study's principle investigator is willing to advocate for you, you can talk with her/him to appeal.

    I haven't heard many success stories about personal appeals to get into clinical trials.

    Also, I'm quite unclear why you are pushing to get into a Phase IB clinical trial when there are many accepted and acceptable treatment approaches for those newly diagnosed with MBC.

    Maybe you can clear up my confusion?

    BTW, the push for newer = better has bitten the MBC community in the bottom many times - Avastin and BMT with SCT come to mind.

    http://www.webmd.com/breast-cancer/features/avasti...

    http://theincidentaleconomist.com/wordpress/the-ri...

    Sometimes it's counter-inutuitive to go with the tried and true instead of the experimental and new...but it can make very good sense!

    After Tamoxifen fails in MBC patients, the next step is usually aromatase inhibitors (two types non-steroidal and steroidal), then fulvestrant. The former may be combined with everolimus, the latter with palbociclib.

    Please keep up your research, but take the necessary steps now.

    healing regards, Stephanie

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  • funthing42
    funthing42 Member Posts: 418
    edited March 2016

    Chiming in again ,

    I personally would prefer proven results as well. I'm on Aromasin my cancer keeps coming back every year, very relentless. I go back and forth from Her 2 + to Her - .

    I'm not sure what possible combos will be given. Im waiting 2 more weeks for doctor to return. It's awful .

    I wish it was more black and white . Trials should be open and accessible for all if any hope or evidence it works exists.

    Good luck.

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