ILC & now nearly 10 years later Liver Mets

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Fitzy
Fitzy Member Posts: 136
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis


Any good news, breaking news about clinical trials on Liver Mets would be much appreciated. Starting Abraxane on Friday. So unbelievable that I got back to such great fitness and health and bam ... multiple liver mets! Never thought chemo did a lot to shrink the original ILC, and have read papers that chemo success isn't as good on ILC, although my new onc thinks there was some impact from TAC! So any positives to get me ready to fight again will be great.

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  • Racy
    Racy Member Posts: 2,651
    edited November 2013

    Hi Fitzy, I'm in Oz having had ILC. I'm not in your position at the moment but bumping your thread to get other replies.

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  • Rdrunner
    Rdrunner Member Posts: 309
    edited November 2013


    sorry to hear this has happened. I am curious as to what your original diagnosis was, was it a big tumor, node positive? hormone positive ?


    Im not in your position either although they are investigating my liver and left hip at the moment.

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  • Fitzy
    Fitzy Member Posts: 136
    edited November 2013


    ILC, 6cm+, Stage IIIb, Grade 2, 5/6 nodes, ER+/PR+, HER2-

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  • Rdrunner
    Rdrunner Member Posts: 309
    edited November 2013


    Thanks, i was curious, 10 yrs one must have thought you were clear free, im really sorry this is happening.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2013


    Fitzy, I am so sorry for your news of recurrence. Gemzar isn't new but I have a friend who had an ILC recurrence to her liver and she got Gemzar. It was like an atomic bomb on those lesions. Every one of them is gone and she has been NED again now for two years. Good luck to you.

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  • Fitzy
    Fitzy Member Posts: 136
    edited November 2013


    Just the great, positive news I like to read. Thanks so much. Will ask my oncologist about Gemzar. Hope your Thanksgiving is going well.

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  • dlb823
    dlb823 Member Posts: 9,430
    edited November 2013


    Fitzy, no words of wisdom here, but I just wanted to tell you how very sorry I am that you're dealing with a recurrence at a point I'm sure you felt pretty much past worrying about one.


    Hoping you have a brilliant medical team that will choose just the right tx to get you NED again. (((Hugs))) Deanna

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  • Momine
    Momine Member Posts: 7,859
    edited December 2013


    Fitzy, no words of wisdom, but as a fellow 3B'er just wanted to offer a hug. Cancer is such a bitch.

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2013


    Fitzy, we're so sorry to hear such unwelcome news… We really hope that this treatment works well for you.


    As for the clinical trials, the National Cancer Institute has a section where you can make a search by country, cancer type, treatment type, etc. You can fill those fields and see if something interesting comes up in your area. URL here: http://www.cancer.gov/clinicaltrials/search


    Also good information on How to Find Clinical Trials in the main Breastcancer.org site.


    Hope this helps!


    The Mods

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  • camillegal
    camillegal Member Posts: 16,882
    edited December 2013

    Fitzy I'm so sorry for this news for u. There seems to be so much out there now I truly pray u'r team finds the right combo or one to go back to NED

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  • lrsreyes
    lrsreyes Member Posts: 93
    edited December 2013


    Fitzy did you take Femara for 10 years and still got a recurrence?

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  • Fitzy
    Fitzy Member Posts: 136
    edited December 2013


    9 years on Femara. First I had TAC to shrink the tumour, which it didn't, then started Femara, then MRM followed by Radiation. My issue is if TAC did little to reduce the primary tumour, why will Abraxane have any efficacy on the secondary?


    They haven't done a biopsy on the Liver mets yet but they will do so to check the hormone receptor status but obviously Femara stopped being effective.

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  • pajim
    pajim Member Posts: 2,785
    edited December 2013


    Hi Fitzy, if Femara worked for such a long time, there are plenty of other hormonals to try (Faslodex is usually the next one). Pfizer has a clinical trial enrolling now -- palbociclib is the name of the study. I'd enroll except no site near me.


    Wishing you the very best of luck. . .

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  • Fitzy
    Fitzy Member Posts: 136
    edited December 2013


    Thanks so much, pajim. I'll enquire about Faslodex. So far migraines only SE from the first round of Abraxane, hope they become less constant though, I've never had many migraines before.

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  • Woodylb
    Woodylb Member Posts: 1,454
    edited January 2014

    Hi Fitzy,

    I am sorry it is back after so long, i myself after 3 years ,it is back with liver mets, my onc started me last week on carboplatin and gemzar. I wish you luck don't be scared people also continue to live and there are plenty of new treatments coming out every six months almost. My prayers are with you. Be well and strong you are not alone. 

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited January 2014

    Hi Ladies, I have an appointment on Thursday to be assessed for liver mets. Pretty much losing my mind completely. Keep the info coming.

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  • Fitzy
    Fitzy Member Posts: 136
    edited January 2014

    Hi Maria, The first dx and then waiting for results is the worst part. As others say, you calm down once there is a plan in place, for some moments at least! I've found yoga and meditation helps when anxiety kicks in. Hope it's not liver mets though.

    Woody, my oncologist said yesterday we would probably move to the Carbo/Gemzar combo next. I agree with 'continue to live'. Thought I wouldn't be able to take a planned trip to New Zealand with my younger son but, with some rearrangement, had a great journey through 'middle earth' with him. Tumblr Photos

    I had a CT scan yesterday that showed stability with my liver lesions, so no progression which is good, shrinkage would have been better though! Will stay on this chemo, Abraxane, for another 3 week cycle, starting today. Will then have a liver biopsy to establish the current hormone status of the metastasis and future treatment options. My liver enzymes and tumour markers are down which is good and I feel well and am training and working still! So it was good news but not great news! Waiting for the results yesterday was pretty horrendous, anxiety is the worst side effect! Cath xxx

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  • Racy
    Racy Member Posts: 2,651
    edited January 2014

    Fitzy, it sounds like you had excellent treatment the first time and again now. You are doing all you can, unless you want to get another opinion. Glad you enjoyed NZ!

    Maria, wishing you the best.

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited January 2014

    These threads and the PMs I got from some very kind women have really helped me this week. My doctor assessed my situation yesterday and administered extensive bloodwork, I am seeing my surgeon for evaluation today, and a CAT scan Monday. The doc doesn't know what is going on and wasn't able to make a probable call. 

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  • Denny123
    Denny123 Member Posts: 1,886
    edited February 2014

    Fitzy,

    Really late to this thread, but in Jan 2004, my biggest liver met was 9cm with numerous mets throughout.

    I went on a NEW clinical trial of Gemzar and Herceptin and in 9 months my liver was clear.  it has remained clear 10 years later.

    My liver has remained in remission, thanks to Herceptin.  Except for a recurrence in the lymph nodes behind my sternum.  But on Gemzar once again and it seems to be doing the job.

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited August 2014

    I can add that my onc has a patient who was dx'd in late 1990s with mets to organs - I'm not sure which but I think liver was involved (not sure though).

    Anyway, he got her to NED in 2002 or 2003 (I forget exactly) and she has been NED ever since. 

    He's big on running the CARIS report now for all patients. I recommend it. It suggests what chemos might be most effective. In my case it revealed a particular gene mutation that it was important to know about (the PIK3CA mutation that inhibits that effectiveness of Herceptin unless Everolimus is used concurrently).

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited February 2014

    At 2:30 I drink my "ready cat" shake to prepare for my 4:30 CATscan. Nerves!

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited February 2014

    Mariasnow, 

    Thinking of you this afternoon, positive wishes are headed your way....

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited February 2014

    I got through it. Didn't like the techs reaction. She acted depressed, looked down, and said "I hope you get better." Weirdly I'm not all anxious for my results. I don't even trust a lot of the results anyway. Tons of people are told they are NED and they weren't. I hear it over and over. 

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  • shoppygirl
    shoppygirl Member Posts: 694
    edited February 2014

    I know it is difficult, but I try to never read into the tech's beheviour.  I can't tell you how many times I have had a scan and I think they are all in the back looking at my images in horror when they turn out to be clear!!

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited February 2014

    shoppygirl, I'm so glad you are doing well. May we both stay well and love long and love and prosper. 

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited February 2014

    So I had my tumor markers, liver and kidney tests, and CAT scan and all came back with no concerns. Still going to go through a bone scan since the doc feels my ribs should not be so tender - waiting for a call for it to be scheduled.

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  • shoppygirl
    shoppygirl Member Posts: 694
    edited February 2014

    Mariasnow

    Since the cat scan was clear, I am sure the bone scan will be too. 

    Such good news!  

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  • Fitzy
    Fitzy Member Posts: 136
    edited February 2014

    Congratulations, Maria. Hope you can relax a little now.

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited February 2014

    I need to get through the bone scan before I can relax. Although it seems to be all in a day in my life for some time now. Just worked an extra long day so I can have Thursday off for my scan. 

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