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How are people with liver mets doing?

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  • JimmieBell
    JimmieBell Member Posts: 59
    edited January 2014
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    Looks like I'm a candidate for yttrium-90 microspere radioembolization for my liver mets. So I'll have a liver biopsy, then tumor zapping, then chemo, My onc is thinking Halaven (eribulin). I see her a week from next Wednesday.

    Being off treatment for a few weeks has made me a crazy worry wart. I mostly feel great and love being able to think more clearly. Maybe I'll trim a mohawk til it all falls out this time. Anything to embarass my children!

  • Woodylb
    Woodylb Member Posts: 935
    edited January 2014
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    GA thank you for your prompt answer, and thank you for your heartfelt wishes. I am doing well till now no symptoms of anything the little pain i feel most of time doesn't need any pills. I consider myself very lucky on that level. I know all these ladies are wonderful and i am in aw of their tenacity and lifted spirit. Even though stage IV is not really what we hoped for , i know that we still can survive it. If anything , it made more determined to fight.  I wish you all , a good fight , and a fast recovery and lots and lots of love to sustain this fight. I will certainly share all my updates with you. Big Hugs to all of you ldaies out there. 

  • Woodylb
    Woodylb Member Posts: 935
    edited January 2014
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    Blondie, pain has nothing to do with a petite frame. Some people are with symptoms and some aren't. I myself am without symptoms , it was by mistake that we found extensive spots on my liver. No pain , no abnormal liver enzymes or function and a normal CA marker, yet my mets are there. I just have a fatty liver and i am very petite. Don't think about the pain, focus on your treatments. There are others out there living with liver mets and are doing fine. I am not saying it is easy nor a short journey, just keep the faith that you will do well and find the strength to fight with all your might. Lots of love and best wishes for a long remission.

  • redwolf8812
    redwolf8812 Member Posts: 580
    edited January 2014
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    Hi, all.  I was diagnosed with a 9cm tumor in my liver in November 2011, after having finished all my chemo for Stage 3C breast cancer.  So glad I had that pet scan - I had no symptoms - we just wanted to make sure we got it all.  Been on several chemos, 2 trials, had 2 ablations.  They've "waxed and waned" and now there's also a suspicious spot on a left rib.  I've just started a trial where I get palbociclib and herceptin - my first scan since starting is on the 6th.  

    How is everyone's weight and energy?  I'm fighting 20 pounds I've put on since diagnosis.  I try to bike and lift light weights but it's still sticking around (I know it's my poor eating habits).  I've gone up 2 or 3 sizes.  Yuck.

    What about your tumor markers?  I know most people, oncologists included, feel that they aren't very accurate.  I just started getting them again because the trial requires it.  They seem to be hovering in the mid to high 200's.  They were about 100 when I was first diagnosed stage 4 back in November 2011.

    As always, prayers for all of us,

    Love,

    Penny

  • Woodylb
    Woodylb Member Posts: 935
    edited January 2014
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    Hi Penny, 

    I congratulate you on your high spirits keep it up, everyone on this thread is fighting the same battle, and a lot are winning it wither by keeping the disease at bay or surviving the treatments and staying alive. They are all admirable and fighters. Markers are not really very accurate but in some treatments they are required. So do not count so much on them , count on your scans and your doctors. Mine was progressing without any sign in the marker it was probably the lowest 23.5. Pablociclib seems to be giving good results in clinical trials , h hope with all my heart it works for you. As for the weight most of the time it comes from the meds but also you can make it worse by eating unhealthy foods. I am not very keen on special diets for cancer but i am watching what i eat and how often. I eat a lot of cooked veggies  and add lemons salt and olive oil as dressing small pieces of meat from time to time, grilled fish , fruits and a lot of soups. I do not eat lots of bread , some pasta and some rice and potatoes mostly boiled with water. It worked for me this time around. I hope i helped. Wishing you good health. 

    Hugs, 

    Woody

    P.S . I admire your faith may god be with you

  • Woodylb
    Woodylb Member Posts: 935
    edited January 2014
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    i am deeply touched and a bit  depressed by spamgirl and OBxK may god have mercy on their souls. They were both such nice ladies and highly spirited they will be missed. I hope they will be watching over us from where they are. My prayers will be with them tonight and for all of us still here fighting may you all be blessed and protected ... To life! 

  • Woodylb
    Woodylb Member Posts: 935
    edited January 2014
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    wonderful news jac53 i hope they stay gone

  • ronniekay
    ronniekay Member Posts: 657
    edited January 2014
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    How did I just find this!!!   Diagnosed stage 4, 12/12 w/liver mets (after 1st dx in 09, 2nd in 11).  Since I had taxotere, cytoxan & herceptin in 09, onc decided on navelbine/hercep/perjeta this time (she wanted xeloda but insurance said not with navelbine...hence, she added perjeta).  I began txt 1/2013 and on first scan 6/2013, 80% reduction. Scans again 9/2013, 30% more reduction.  Scans 1/2014, no change (which upset me for a moment!),  but since my tumor markers, blood & liver function tests are all normal, she thinks there's no volume, or "cancer activity."  Since I have tumor scarring, dimpling, in the lining of the liver, they can't deem me NED...dang, since scars will always show on scans. She said she doesn't feel it's necessary to scan again for a while...unless there are changes in my blood tests....or if I want them :)

    I am so heartened to hear YEARS of living with liver mets.  When diagnosed with stage 4, the first thing I did was log on to stage 4 and found Denny....and my heart did flip-flops!!!   Hearing that she was 10 years at that time gave me incredible hope!  I am so hopeful now, too.  My onc said that she was hoping to get at least 5 months out of navelbine, and here I am at 12 months & still going strong!!!!   Wishing strong days to all & treatment that keeps us posting for a long...long time!   XOXO

  • Woodylb
    Woodylb Member Posts: 935
    edited January 2014
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    hello ladies, 

    Does any of you have liver and bone mets ? Because my onc suspects the bone mets but he believes liver takes precedent and the carbo gemzar will treat both mets? Can anyone enlightens me on this? Does anyone knows if you can go into remission or prolonged survival with these mets? This really took its toll on me ...

  • Redroan
    Redroan Member Posts: 111
    edited January 2014
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    I have liver and bone mets, I was on arimidex for about a year and was doing well before tumor markers went up and more pain, changed meds several times during that time, had a fracture in June and started chemo in august, I am on abraxane now. Hoping to live a long long life and watch my youngest graduate and someday my son's get married. 

    I wish you the best, 

    Redroan

  • jocanuck1951
    jocanuck1951 Member Posts: 214
    edited January 2014
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  • jocanuck1951
    jocanuck1951 Member Posts: 214
    edited January 2014
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    well I tried to make it a hot link but...😐 so copy and paste?  Jo

  • chanah
    chanah Member Posts: 90
    edited January 2014
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    Good article.  Thank you for sharing.

  • SyrMom
    SyrMom Member Posts: 575
    edited January 2014
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    Woodylb .... check out Denny123 ... 12 yr survivor with liver & bone mets!!  I think she said it was Gemzar that knocked her liver mets out.  There are many hopeful stories similar to hers.

    I've had bone mets since dx in 2010, then last year dx with liver mets.  First scan following taxol showed it knocking the liver mets down to smaller size.  Hoping for an even better report in Feb.

    Hang in there.

  • cheery
    cheery Member Posts: 23
    edited January 2014
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    I've linked following thread for those who're interested. Both Denny123 and Pearlady1 are 12 year survivors. 

    Twelve Years Stage IV

    I'm 5.5 years out with liver met. NED for 4 years and then liver met progression. I'm now back to NED. Hope this will provide some encouragement. Don't give up hope that you will find the treatment that hits those mets down!  

  • cheery
    cheery Member Posts: 23
    edited January 2014
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    @woodylb

    Not my intention to go OT but thought I'd respond to your query. 

    Briefly, chemo is systemic treatment targeted at the whole body, including both bone and liver mets. Bone mets are generally deemed to be slow growing while liver mets are considered more aggressive in nature. As such, your doc wants to quickly hit the liver mets hard with Carbo/Gemzar. This is a very strong chemo combo as each chemo on its own can be very hard on the blood counts. Both are known to be effective on liver mets. 

    You might want to start a new thread to get more feedback, otherwise there are several threads in Triple Negative. I've linked one for your reading. 

    Carbo/Gemzar

    Hope this helps. 

  • Woodylb
    Woodylb Member Posts: 935
    edited January 2014
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    thank you Cheery for your prompt response 😊 i hope you always stay cheery. This is exactly what he told me. But i am not triple negative i am strongly 85% ER positive , so after the chemo combo he intends to start me on Aromasin and from there we will see. I hope i respond to this combo , he has high hope and you wonderful ladies gave me all the hope i need. I will check the carbo gemzar thread . Thank you so much 

  • Woodylb
    Woodylb Member Posts: 935
    edited January 2014
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    Syrmom i read you before , thank you for your response and encouragement and your help i hope your report comes out clean and you go NED on all of them. Please let me know. The reason i ask so much is that all researches were done mainly on IDC and not enough ILC even though for the past years it is increasing specially in perimenopausal and postmenauposal i was diagnosed at age 50 . Thank you again and please keep me informed on your status wishing you the bset news ever. 

  • ronniekay
    ronniekay Member Posts: 657
    edited January 2014
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    When I heard that I had numerous mets to the liver, 8 & 6 cms, I was totally defeated.  Denny told me she'd also had large tumors, such a lift to my spirits!  When my onc told me she planned navelbine/xyeloda, I argued for Gemzar!  I knew it worked for Denny & that's what I wanted!   Onc said gemzar had a few more side-effects and she'd keep that in her pocket.  Glad to know that we have options if one txt stops working!   Anxious to read the article, Jo!

    Question....do your oncs give you the feeling that scans hold more weight than blood, tumor, liver tests?   My onc said not to worry about tumor markers see-sawing in the normal range...it's what they do.  But after my "no change" scan, she said she's confident about no cancer activity in the scan, that she'd be more concerned about changes in the other tests.  I know I said all that before, just wondering what your oncs say.  I see her each month so will ask her again.  Sometimes I come home from appts and wish I'd asked more questions...other times, I feel like I've had diarrhea of the mouth!!!

    Happy Week to All!

  • SyrMom
    SyrMom Member Posts: 575
    edited January 2014
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    RonnieKay ... are you still on the navelbine after the liver mets are thought to be inactive?  If so, did your onc indicate for how long? Like indefin.?

    My onc mainly goes by CT scan results.  However, that's for the chest and pelvis, not bones.  The report will always say the bone mets appear stable, but you cannot accurately tell from the CT scan; you need an MRI.  I had some real bad stuff going on in my T10 (still do) and the CT scan said stable bone mets!  The MRI told the true story.

    Regarding TM's, in my case it's more the trend than the number.  In other words if I keep trending up instead if zig zagging back and forth, then it's usually indicating a problem.  However, some women report their TM are a real indicator of what's going on.  Recently, however, my markers have come down some, so I've been real happy to see the down trend and hoping for more!!  In addition, the onc keeps watch on my liver enzymes, but even as I progressed they were in the normal range.  What a crap shoot. 

  • deliciae
    deliciae Member Posts: 2
    edited January 2014
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    I just got the results from my first set of scans after 4 rounds of Gemzar/carboplatin.  Liver mets are down by 50% and the mass in my lung is completely gone!  ThumbsUp  Starting chemo again this week, same meds, to see if we can get the liver mets down even more.  

    It was a miserable couple of months during that cycle - some weird SE after every round, including a malignant pericardial effusion & cardiac tamponade, which put me in the ICU for a few days.  These scan results have me ready to get going again, though.  Woot!

  • redwolf8812
    redwolf8812 Member Posts: 580
    edited January 2014
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    Thank You, Lord, for Deliciae's good news!

    - Penny

    :D

  • SyrMom
    SyrMom Member Posts: 575
    edited January 2014
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    deliciae ... wow, congratulations.  Hope your liver mets continue to shrink out of existance!!

    Did they think it was the gemzar or carboplatin that caused your cardiac issues?

    Good luck - I'm sure they have a plan in place to avoid those s/e. (?)

  • cmhartley
    cmhartley Member Posts: 23
    edited January 2014
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    Deliciae, congratulations!  So very good to hear this news.  I pray you continue to receive good news and that this treatment continues to be successful with little to no SEs for you.

    Hugs,

    Katie

  • jocanuck1951
    jocanuck1951 Member Posts: 214
    edited January 2014
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    Great news Deliciae!   Jo

  • Woodylb
    Woodylb Member Posts: 935
    edited January 2014
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    Redroan, thank you and i hope you live for a very long time and see your children and your grand children.what was your initial cancer IDC or ILC ? Sorry to ask but most ladies are IDC since i am ILC originally , i am interested to know the type of cancer since ILC is very unpredictable. Thank you again. Smile

  • Woodylb
    Woodylb Member Posts: 935
    edited January 2014
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    Deliciae, hourrayyyyy!!! Great news i hope next time you will tell us they are all gone. I am having the same combo , i just did one time the second is on the way , i am hoping for the best. Congrats again and yayyyyy...

  • Redroan
    Redroan Member Posts: 111
    edited January 2014
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    Woodylb, I was IDC I believe, My first breast cancer was in 1991, Did not show up until 2012 this time. Best of luck  to you also!

    Redroan

  • smiley47
    smiley47 Member Posts: 91
    edited January 2014
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    deliciae

    Congratulations on the chemo drugs smashing those liver mets. Wishing you the best of luck in the future.

    Allison