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How are people with liver mets doing?

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Comments

  • babs6287
    babs6287 Member Posts: 1,619
    edited January 2016

    Just found out that for the first time since my MBC dx, my tumor markers ( which are always spot on) went down and they went down 14 points. The Xeloda is working for me.

    Wishing everyone similar success with their treatments!

    Babs

  • artistatheart
    artistatheart Member Posts: 1,437
    edited January 2016

    Yeah babs! May Xeloda work for many moons! Did the Femara/Ibrance combo work at all? Just curious as I failed the Ibrance due to elevated liver enzymes, so we switched all together for now to Faslodex. But my Onc said we can probably revisit Femara down the road....

  • babs6287
    babs6287 Member Posts: 1,619
    edited January 2016

    Thanks Artista. On the Ibrance/Femara I was basically stable for 3 months-my TM's went up a few points but then they started to really climb after that. My first scan at 3 mos of the combo was stable with a few possible additional mets on the bone but nothing definitive and my second scan at 7 mos showed the definite progression to the bones and to the liver too.

    Babs

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited January 2016

    Very glad to hear the TMs are going down now, Babs. Down with TMs! Go Xeloda!

  • Woodylb
    Woodylb Member Posts: 935
    edited January 2016

    glad Xeloda is working for you babs and h.ope it will continue for a long time :)).

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited January 2016

    yay Babs

  • babs6287
    babs6287 Member Posts: 1,619
    edited January 2016

    Thanks left foot

    Babs

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited January 2016

    can't rememberi if I posted this here or not.

    Got my brain MRI results and I am still clean.

    What a relief.

    Thanks for your sipport


  • Woodylb
    Woodylb Member Posts: 935
    edited January 2016

    leftfoot ,

    Yayyyyyy , wonderful ! I hope it stays clean all the way. Cheers to that. :))

  • babs6287
    babs6287 Member Posts: 1,619
    edited January 2016

    Leftfoot- what a relief for you!!! Great news!!!

    Babs

  • babs6287
    babs6287 Member Posts: 1,619
    edited January 2016

    I have a question for everyone.

    What do you know about chemo sensitivity testing? My BS recommended I see an MO for a second opinion. He's a big advocate of this testing and my regular MO is an advocate of genome testing.

    Would like your input.

  • Longtermsurvivor
    Longtermsurvivor Member Posts: 738
    edited January 2016

    HI Babs, I have no answer to your chemo sensitivity question, but am hoping you seek and find adequate treatment for you now.

    Good news, Leftfoot! Celebrating with you.

    I have a question about liver pain - I've had numerous liver mets for two years and ascites for a year. With tumors both in and surrounding my liver, the pain seems related to what's happening on the outside (capsule). Until recently! Now it feels like I'm being stabbed just below my sternum. It could be the ascites which has recently increased in volume (3 months pregnant even after daily draining). But I wonder why it's now localized after being diffuse for so long?

    Does anyone else have liver pain with liver mets, how does it feel and what seems to help?

    Lying down, sleep when possible, increasing pain meds - any other tips?

    Thank you all so much for being here in my time of need.

    Oh, I should mention, I'm on hospice, so am not seeking second opinions, testing or aggressive treatments (though I'm still on Femara/letrazole).

    Thanks again!

    warmly, Stephanie

  • Woodylb
    Woodylb Member Posts: 935
    edited January 2016

    hello babs,

    For me it was intelligent genomic testing which cited which chemos are most likely to benefit me and the ones the least i could benefit from. However, it was helpful in assreting that i am Her2+ after two negative FISH. it changed my whole treatment to which i responded very will and i still do. My second dx my her2 was equivocal which was totally negative in my first dx. To me this was the right test to do. I was about to request the sensitivity test but then i had a change of heart. I can tell you that genomic testing will name each gene your cancer has and a recommendation as a conclusion as to how you may respond to each chemo or targeted therapy. I read on bco that there is a genomic testing kit in the US and it costs 200$ it was not the one i did. Mine was fairly costly. I hope this helped , my advise is for you to choose the one you feel is more adequate to your case. :)

  • Woodylb
    Woodylb Member Posts: 935
    edited January 2016


    Stephanie, i am so sorry you feel pain . I can tell you the only time i felt pain in the liver was before my dx and when i did not know it was back. It was dull and very deep not a stabing pain. But like you adequately mentioned , ascites cause pain. I pray you soon get relief because i know from my aunt it can really be an unbearable pain. Holding you in my thoughts and my prayers. Sending you healing lights.

  • Longtermsurvivor
    Longtermsurvivor Member Posts: 738
    edited February 2016

    Thank you, dear Woody!

    Your kindness brought a sigh of relief to my troubled mind.

    Am back in equilibrium again.

    Back to dancing with pain & cancer, instead of crawling about. Yay!

    Many blessings for all of us! ~ Stephanie

  • chichimaine
    chichimaine Member Posts: 89
    edited February 2016

    Hi all!

    I haven't been on for a while...again. I've seen some great news...LeftfootForward, wonderful news on brain mets!!! Our ever faithful Woodlby is still posting daily and lifting all with her generous spirit and warm heart. I almost feel guilty posting with good news when I see so many of us still in pain. I just got results from my third set of CT scans in a row showing no evidence of liver mets and no change in lung nodules!!! My onc actually said "This is borderline miraculous!" The Navelbine I took after failing with Xeloda kicked the liver tumors to the curb and they have not raised their ugly heads since.

    I am so grateful for each day and thankful to God who has seen me through the last 5 years of cancer "fun!" Just want you all to know that it is possible to have remission from liver mets and I'm wishing that for each of you!!!! Happy Debbie

  • chichimaine
    chichimaine Member Posts: 89
    edited February 2016

    Jaytee,

    Here's to hoping the Navelbine works as well for you as it did for me. It was a surprise when my liver mets were found to be triple negative ( was originally ER+, PR+, HER-. We tried Xeloda first, but I had a sever reaction to it...caused my coronary arteries to spasm...three days in icu and no more Xeloda ever for me!

    Anyway, although you are not triple negative, I'm still believing the Navelbine with kick some butt with the progressions. Sending prayers your way!

    Debbie

  • Isy
    Isy Member Posts: 87
    edited February 2016

    wonderful news chichimaine!! Never feel guilty, your good news makes us all feel good that there is hope that we can all follow in your footsteps. When I first started this mets journey over sixmonths ago now, I really thought that was it. Now with stories like yours and all the positive stuff on here I can truly believe there's hope for me and all of us. Keep up the good work!!

  • Woodylb
    Woodylb Member Posts: 935
    edited February 2016


    Chichiiiii,

    Wonderful news ! Tou desreve a happy dance and i am doing it. This is great i am so happy Nevalbine worked for you and kicked your liver mets and it is great that the nodule on the lungs is stable. I hope you continue to give us good news . Enjoy your time away from liver mets and God bless you. Loads of love.

  • Jaytee
    Jaytee Member Posts: 738
    edited February 2016

    chichimaine......I am so happy and encouraged to read your good news this morning! Praying for you to have continued good results. I have got scans scheduled for the 18th. Thanks for thinking of me and for all the prayers! Wishing everyone well this morning.

    judy

  • babs6287
    babs6287 Member Posts: 1,619
    edited February 2016

    Debbie

    So happy for you. Whenever I hear of someone else's success, it gives me more hope so I'm truly happy you shared this info with us!

    Babs

  • Longtermsurvivor
    Longtermsurvivor Member Posts: 738
    edited February 2016

    Debbie, no guilt please, only celebration of your good news and gratitude!

    I'm new here and we haven't met yet, but I'm one who's doing not so well with liver mets. Yet, I'm so very happy that your treatment has yielded such good results for you!

    Thank you for sharing your good news with us.

    warmly, Stephanie

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited February 2016

    that's wonderful me Debbie. Always share your good news.

  • ronniekay
    ronniekay Member Posts: 657
    edited February 2016

    Chichi...so happy to read your wonderful news!  When my liver mets were found in 2012, my onc said she always starts mbc patients on navelbine. She said it's a very good, old chemo (derived from the periwinkle plant) and that its ses were more mild...helping one to not look or feel like a C patient.  After 22 months on it (w/h/p), I started feeling a bit run down...which is when my new onc said he was taking me off.  I remember my liver enzymes after 1 month were normal, TMs fell quickly, my first scan at 5 mos showed 80% reduction, 2nd scan 30% more & 3rd & last scan in Aug, still stable...even said NED.  SUE is another navelbine gal that it worked wonders for!  I am so overwhelmingly happy whenever tx works for a sister.  My onc is busy researching more in-depth studies on defining best tx for individual tumor types.  We were invited to his lab open house...such smart people!!!   Wishing everyone healthy days!!!!

  • chichimaine
    chichimaine Member Posts: 89
    edited February 2016

    Thanks for all the response to my great scan news. So good to hear from you RonnieKay and Woodlyb...I have missed you both. Thanks LeftFoot and Isy, too. Jaytee...I will be praying for good scan results on the 18th...be sure to let us know. And welcome to all the new members...I'm sure you would rather have joined a book club instead of our "fun" club, but I'm glad you are here among those who understand and offer friendship, a shoulder to cry on and the best encouragement you can find anywhere. Thinking of you all and wishing a blessed night!

    Debbie

  • artistatheart
    artistatheart Member Posts: 1,437
    edited February 2016

    Chichi, I agree that I want to hear all the good news too. Some days we just need that extra shot of optimism. It's great news and I'm very happy for you! So RonnieKay, did you stop Navelbine and if so did you start something new yet? That is so fantastic how well it worked for you too!

  • Woodylb
    Woodylb Member Posts: 935
    edited February 2016

    Chichi i miss you more but i am so glad you are doing well . I was about to pm you to check up on you. So now i am happy very happy for you. Kisses.

  • artistatheart
    artistatheart Member Posts: 1,437
    edited February 2016

    So, my liver enzymes took a good little dip downward again. So I guess I don't have to do another liver biopsy yet. Yeah!.....small steps. I just hope they keep on sliding back to normal and I can just keep on some kind of an even keel for awhile.

  • babs6287
    babs6287 Member Posts: 1,619
    edited February 2016

    Artistathea-I too am hoping your liver enzymes slid all the way to normal-and happy they're going in the right direction!!!

    Happy News!!!

    Barbara

  • artistatheart
    artistatheart Member Posts: 1,437
    edited February 2016

    Thanks Babs, I'll take it.....How are you doing lately? How long ago was your 7 month scan?

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