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How are people with liver mets doing?

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Comments

  • redwolf8812
    redwolf8812 Member Posts: 580
    edited June 2014

    I've been following the threads about Terri. I was sorry to hear she passed on. 

    - Penny

  • Woodylb
    Woodylb Member Posts: 935
    edited June 2014

    May she rests in peace and God help her family and friends to heal their pain. Lovely lady , she will be missed. 

  • ronniekay
    ronniekay Member Posts: 657
    edited July 2014

    She touched many...as each one posting here has done.  

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited July 2014

    ThumbsUp

    Well said. I feel the same way

  • Kiss77
    Kiss77 Member Posts: 91
    edited July 2014


    Hi all

    Today doc told me that I have liver mets. They saw something suspicious on my liver , the PET said it is hemangioma and today they use more precision ultrasound and found 3 or 4 lesions. On 17/07/2014 I'm going to do ultrasound with contrast and maybe biopsy.  I think the mets were there last year when I was dx., just not enough big to be seen, as my TM 15-3 was 129 at the time of dx, and now it is climbing again (it was 17 after the treatement). I'm terrified.

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited July 2014

    welcome kiss to the group we'd all rather avoid joining. The initial days are terrifying. I'm only 6 months into this dx. I assure you the people on this thread (all sIV threads) understand your feelings and can offer many helpful tips to thrive with a challenging dx   

  • Kiss77
    Kiss77 Member Posts: 91
    edited July 2014


    Thank you, Maureen! I can't believe the PET scan made a mistake...It was so soothing to see there is nothing and then BAM!

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited July 2014

    Same story here. Tumor markers kept rising then bone mets then liver mets. I was scared to state mildly. Went on chemo after failed hormonal  and started to see regression. Once treatment plan is formed i felt more empowered because I was doing something to kick those buggers to the curb. One important note, you have breast cancer cells on the liver. This is very different than liver cancer. When do you meet with your onc?

  • Kiss77
    Kiss77 Member Posts: 91
    edited July 2014

    I wrote her an e-mail with the ultrasound results attached. I don't know for the moment when I'm going to see her.

    Yes, they said all the spots are breast cancer mets, not a liver cancer.

  • redwolf8812
    redwolf8812 Member Posts: 580
    edited July 2014

    Hi, Kiss77.

    I'm sorry you're going through this.  I hope you can take heart in the fact that many of your "sisters" have been dealing with liver mets for years.  Denny123 was NED for many, many years and has been dealing with them for about 12 years, I think.

    Keeping you, and everyone, in my prayers.

    :-) Penny

  • many
    many Member Posts: 57
    edited July 2014

    kiss77.    How elevated are your Tumor markers now ?

  • Kiss77
    Kiss77 Member Posts: 91
    edited July 2014

    redwolf, thank you! 12 years sounds amazing! I saw a statistic somewhere in the net and I'm very frightened.

    many, 18/03 - 17, 30/04  - 19, 20/05 - 25. I didn't check them now. Maybe my onc will check them before the treatment. I can pay for this test and have it done right now, but for the peace of mind I won't do that till start of the new treatment.

  • Woodylb
    Woodylb Member Posts: 935
    edited July 2014

    Kiss, I am sorry to find yourself here. It is a place where none of us want to be. To confirm liver mets from breast cancer you must request a biopsy. Without, do not accept anything else or settle for. Only biopsy can confirm it. Even if your markers are up or down. Mine were at their lowest when lesions showed on my liver and my doctors insisted on biopsy. Still my markers are down even though my new dx is since end of december. So before a biopsy please do not try to guess, as it will do your emotions a lot of harm . I must insist ask for a biopsy nothing less. Keep us informed and welcome. Wishing you well. 

  • Kiss77
    Kiss77 Member Posts: 91
    edited July 2014

    Woodylb, thank you! I'll insist to have a biopsy. Moreover I want to make Caris test. I know the ER, PR and HER2 receptors can be different now.

  • Woodylb
    Woodylb Member Posts: 935
    edited July 2014

    Kiss77, if the biopsy is positive god's forbids then they will do the histopathology test to see if there is any change in the hormone status. You are like me ILC you will most likely still be ER+ , PR may change HER2 will most likely be negative except sometimes in rare cases. In all cases i hope it is just what PET showed and if not do not worry keep your faith . 

  • ronniekay
    ronniekay Member Posts: 657
    edited July 2014

    Thinking of you Kiss....once we've had that first dx, and go through txt..,it's just incredible that crummy cells creep back up...but by the number of members on this board alone...that's what it does :(  I can honestly say I never gave bc a thought after my first "cure."  With #2, I did the whole recon & knew that I was cured..again.  Six months after a clean scan, 12 hr diep surgery & a 2 hr stage 2 to fine tune my breasts, my routine scans showed my liver filled with tumors, from 1-8 cm.  My onc said what you said....probably there from the beginning, just too small to see.

    Our sisters are so right...you must have a biopsy!  As they said, it will give the makeup of your tumors...to determine what txt you need!  One of our liver mets gals had a second biopsy (she's had mets in other spots), as some tumors were shrinking, others were not.  They found she'd become her2+...whereas before, she was her2-.  This gives her drs other options for txt=living longer!!!!   She's Nancyh...look her up :)

    And as for Denny...the day I got my stage 4 dx, I logged on this site & there she was...celebrating 10 years!!!  She's now 12...that can be us!!!   Love to all!

  • Fitzy
    Fitzy Member Posts: 55
    edited July 2014

    So sorry to hear your news, kiss77. Hope they get you on a good treatment plan. Like you, I'm ILC too. I've had a good run on Abraxane over the past 7 months to shrink my liver mets by about 20%. Currently having new bone & CT scans and hope to start on PALOMA3 trial next week (Faslodex plus Palbociclib or Placebo), even though Abraxane is still working, I've decided to enter the trial while I have the chance. My mets are still very er/pr+++.

    Your 15.3 is still pretty low though, so that that's good, even though they have risen a little. As everyone else has written, the biopsy is very important to make tx decisions. Good luck to everyone dealing with Liver Mets.

  • Kiss77
    Kiss77 Member Posts: 91
    edited July 2014

    Hi girls,

    I will have a liver biopsy on July 31. My oncologist insist to make it (I want it, too). For me this is a long time to wait but I'm telling myself that it is very important to make it. My oncologist wants a special doctor to make the biopsy and his schedule is full, so I have to wait. I don't know why here, in Bulgaria, everything is so difficult. Last year, when I was dx. with BC they said I'm HER negative. 4 Bulgarian labs gave me the same result. I sent the paraffin blocks in Paris and they said it is HER positive, but they weren't sure. CISH was not successful because in Bulgaria they made something wrong with the material and the DNA of the sells was broken (I'm not sure what exactly was the problem but I couldn't have a result from in-situ hybridization because of bad material). I wanted to start treatment as soon as possible but obviously I have to play the waiting game again :-(.

    Christina

  • redwolf8812
    redwolf8812 Member Posts: 580
    edited July 2014

    Christina - we all hate that waiting game.  Praying for you...

    :-) Penny

  • Woodylb
    Woodylb Member Posts: 935
    edited July 2014

    Christina very sorry you have to wait for biopsy and results and the whole wait thing. I pray for you to help you keep calm during the whole ordeal. We all went through this and it is hard but somehow we get through it. You are ILC which is usually HER2 negative but sometimes rarely it changes to positive. I hope this time around you get the right results and FISH test are most accurate for HER2. Wishing you good luck and we are all here for support if you need any. God be with you.

  • Krystyna
    Krystyna Member Posts: 3
    edited July 2014

    Christina,

    I am another one living with liver mets for almost 5 years. The women  on this site gave me a lots support. When diagnosed, I was panicking and could see myself dying soon. Still here, have my ups and downs. Since you are hormone positive and you cancer is grade 2, it is probably not very aggressive .

    You still have few hormonal treatments beside Tamoxifen. I have been for more than 2 years on Aromasin. Arimidex did not work for me and Tamoxifen gave me a blood clots.

    I am currently on my 5th chemo treatment  old CMF and it seem to be working quite well.

    Contrast ultrasound is a very reliable test for liver mets. It is not much if all used in US but it is used in Canada. In my case is more reliable than CT scans.I had it few times and they got a much better picture of my liver status than on CT.

    I also had  liver biopsy twice. The first time they did get the right sample, the second time was fine. Nothing has changed in my hormonal status since original Stage 2B diagnosis in 2006.

    It is really hard to wait for the biopsy, but 2 weeks will not change much. Your liver mets were there probably for a while.

    Stay strong.

    Krystyna

    (bone and liver mets since Oct.2009)

  • Kiss77
    Kiss77 Member Posts: 91
    edited July 2014


    Right now I want to hug you all !!!  Thank you so much for the support!

  • ronniekay
    ronniekay Member Posts: 657
    edited July 2014

    Stay strong, Sister...as you see, we're all here for you & each other!!!

  • macska-ma
    macska-ma Member Posts: 8
    edited July 2014

    Krystyna, sending you hugs and thinking of you.

    Waiting is the hard part of this struggle. Personally, it was my problem that i tried to manage for all my life, but now its much more difficult because I feel  helplessness sometimes.

    I am new here. I was diagnosed 3 weeks ago. after sudden big terrible pain in my abdomen that went to my shoulder,  we went to hospital. They told me i was bleeding to abdomen, from my liver mets. That was big shock. I was asymptomatic, no tumormarkers, feeling great. Month after my wedding. Two weeks after my onc. appointment, when she told me everything is ok.Dispite the fact she is the one of the best in tnbc field, she never send me to ct or ceus or pet.only before my first chemo. My fault too, anyway...its not about insurance in CR. It was just mistake i think. I was in risky group.Young, 31yrs old (90% proliferation), tnbc,and not responding to chemo (a/c resistant from begining, taxotere after 4.cycle).

    So after ceus, ct and pet they found 5 mets.two of them huge. Biggest one 9cm, necrosis inside of it.second one 5 cm.rest is small.Now on cisplatin/gemzar. Waiting for biopsy (will have in 2 weeks, they will send it to chemosenzitivity testing) and MRI on monday.So scared but starting to Cope it better i guess. I am not crying all the time.  one or two good cry a day and than trying to survive.My beloved husband, friends and great work help me, such a gift from God especially these days.also writing blog. My survive strategy was always to be in reality (prepare for various possibilities) but hope for best.Now its harder.

    I am scared because i have experience of chemo not working. Also, liver mets are too big.

    And i am preparing for the day when it spread to other area, because it is how tnbc behave. I am mourning too for not having kids... that has always been my greatest desire. 

    Maybe MRI will show something on monday, maybe not. Its too early i suppose. But now i am living in short time Intervals, it helps me. Now my interval is to next MRI. I try to live in present moment, that was my favourite thing before dx, but now its much more chalenging. Present moment after dx can have sometimes lots of pain. But still can handle it because good things are there(here)  too. i will do everything to survive the longest time I can, finally i must leave it in the Gods hands.

    I would like to thank you ladies. This forum helps me so very much. You are so wonderful and brave and caring and you give me lots of power. Also because of you i can cope this.

    Martina

  • fhaido
    fhaido Member Posts: 10
    edited July 2014

    Good luck macska, please keep us posted. My mom was also diagnosed with mets to liver (multiple) and bones 2 weeks ago. The biopsy results indicated that the tumor is not hormonal anymore, which limits her treatment exclusively to chemo. She is 57 years old, my best friend and the greatest grandmother in the world. She is meeting with with oncologist this afternoon to figure out the chemo treatment and get started as soon as possible. I have not stopped crying the past 2 weeks. I would love to hear success stories of women with triple negative tumors. Thank you all for this wonderful forum!!!!

  • redwolf8812
    redwolf8812 Member Posts: 580
    edited July 2014

    Macska-ma - praying for you and fhaido's mom.

    Please keep us posted.

    I have an MRI on the 18th.  Thank The Lord for His Grace and Mercy. 

    SmilePenny

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited July 2014

    I just went to my oncologist for my follow up to my 3 month CT check and brain MRI.  All is well with me. I am still stable and there is hardly any evidence that I have stage IV cancer.  I post this to give all of you hope.  I had two brain mets and too many liver lesions to mention. The liver lesions were not treatable due to location with anyting other than chemo.  18 months later the Tykerb and Xeloda are still working and I am doing great.  I want to give you all some hope that treatment can work and it can work for a prolonged time.  

    holding out hope for all of you and best wishes.

  • wildrumara
    wildrumara Member Posts: 109
    edited July 2014

    Hi Martina -

    Sorry to hear of your liver mets, but happy that you found us here.  Hang in there sweetie!  You sound like you have a good "handle" on your diagnosis and your attitude sounds good too.  It is true, we must live one day at a time.  Can't think too far ahead, as it will definitely bring us down.  All the best to you and lots of ((hugs))!

  • Woodylb
    Woodylb Member Posts: 935
    edited July 2014

    Hi Martina, 

    I am sorry you are here in this thread and can relate easily to your case , but there is always hope. There are people with liver mets and tnbc and still after five years are here. Your attitude sounds normal and so does your reaction. It is true we live one day at the time but so do a lot of other healthy people. Just keep the faith and prepare to fight , a fight which you may win , since no one really knows. We just hope for the best. You are welcome to vent anytime we all do. Best of luck and we are all here for support when you need one. God be sith you :) 

  • Krystyna
    Krystyna Member Posts: 3
    edited July 2014

    Dear Martina,

    My heart is crying since I have a daughter few years older than you. Finding the mets earlier was probably difficult unless you would had CT on a regular basis. Unfortunately the liver mets are usually found accidentally or when they became symptomatic.

    Mine were found accidentally. I got back from my one of the Eastern European trips, and had a horrible cough. Suspected lung mets, but stomach reflux was the reason. During the different tests they accidentally found the liver mets. Last year my mets were quite big ,and Halaven reduced them by half.

    So sorry to hear that you are triple negative, but there are still treatments they can work for you. My friend Christine in Toronto lived 8 years with TN mets.

    Gemzar/Cisplatin are suppose to target triple negative better than other chemos. Some people tolerate them well, others have a hard time with Cisplatin. I have  friend who had to change Cisplatin to Carboplatin.

    Wish you all the best with your treatments.

    Lots of hugs.

    Krystyna

    (bone and liver mets since Oct.2009)

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