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How are people with liver mets doing?

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Comments

  • JCSindia
    JCSindia Member Posts: 13
    edited May 2014

    Hey Guys,

    My moms diagonised with liver mets in Jan 2014 . Given her Eribulin for 2 months but there was slight progression. The Onc increased the dose and currently it shows it is stable . CA 15-3 are down then Jan numbers but the lesions on the Liver are not decreasing which is very worrying for me. We have a CT scan on 20th of this month and hope 3 cycles that are given with increased dose of Eribulin shrinks the tumors. Reading all the posts on the board keeps me going and hoping best for Mom

  • SyrMom
    SyrMom Member Posts: 575
    edited May 2014

    Fantastic!  Always appreciate hearing the success stories.  If it can happen for you, it can happen for any of us!

  • Woodylb
    Woodylb Member Posts: 935
    edited May 2014

    jcsindia,

    I am sorry your mom joined the group and i hope on the 20th you get good news from the CT . But i am curious did your mom have cancer before the liver mets ? Or she was just diagnosed from the start stage IV . The reason i am asking is that i am a bit surprised of the choice of Eribulin for her from the start, as Eribulin is given to women with progressing metastic cancer after they have received at dour other treatmens of chemo. Also what is her cancer status is she triple negative, er+ , her2 negative or positive is her liver mets fron breast cancer or another? Sorry i am asking so much but i found the treatment strange if it is her first diagnosis or second. Having said all this , i wosh your mom good health and improvement. 

  • landafflady
    landafflady Member Posts: 14
    edited May 2014

    Hi, 

    Have not been here for some time...

    I was diagnosed last March (2013 ) with liver mets stage 4 ....no symptoms whatsoever beforehand...had a terrible pain episode which brought me to the hospital and cat scans showed the tumors in both lobes.

    After some time and discussion of tx options I chose to start Xeloda  since it seemed to be the least intrusive given my plans for the summer which were at that time to put my affairs in order etc 

    I began Xeloda a year ago this month and have been on it ever since. My tumor marker was over 1900 when I began and it is now 37 one year later.

    I am managing the side effects well...feet peeling, eyes watering and diahrrea being the main ones.

    My weight went down at first with the amount of diarrhea I was having so the dose was adjusted...twice really so that now it take 4 pills a day for two weeks and then one week off.

    Just this past week the marker went from 40 to just 37 and my oncologist remarked that it looks like it may be plateauing.....which means it has reached its max efficiency....and that means switching to another tx .....

    So I will keep in touch and would love to hear from anyone with a similar experience.

    My first bout with BC was in 2007 when I had a mastectomy (PR ER + 2 sentinal nodes ) plus a nodal biopsy then chemo and radiation and arimadex till last year when mets occurred

    Am Canadian by birth .....moved to US in 1985....still have strong can ties eh?

    Carol

  • Susan8874
    Susan8874 Member Posts: 5
    edited May 2014

    Hi,

    I just found this site tonight.  I was diagnosed with late stage 3 breast cancer in April 2012.  I found out this month that I am stage 4 breast cancer.  My liver is covered with tumors.  I am waiting on a phone call from my doctor to decide my course of treatment.  I felt hopeful when I saw someone had made it a year later with this same diagnosis.


    Susan

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

    Just found this thread. I was diagnosed with liver and brain mets in Dec of 2012.  My origianl stage 2/3 BC was diagnosed in December of 2010.  I just had another round of scans and echos and all is stable. There is no sign of cancer in my brain or in my liver.  Xeloda and Tykerb are working.  So far my drug regimen is keeping the cancer at bay.  There are SE from my meds but I will take them if it means I continue to be stable.

  • Clare64
    Clare64 Member Posts: 33
    edited May 2014

    Great news SpicyP - I hope that this combo works for you for a very long time!  clare

  • Susan8874
    Susan8874 Member Posts: 5
    edited May 2014

    Are you still able to work?

  • JCSindia
    JCSindia Member Posts: 13
    edited May 2014

    Thanks for your messaged Woodylb. My mom was first diagonised in 1993 when she had a surgery and the right breast was removed . Cancer then came back in 2007 in the neck and 2012 in the lungs .2012 she was given navelbine and then Faslodex . She is Er+ and PR + . Jan2014 when we had a routine CT scan it came on the liver and we started with Eribulin . A couple of doctors told us a  life span of 1-1.5 yrs which rattled us . After joinning this group I feel there is some hope and pray that we can keep cancer under control as long as possible .


  • Fitzy
    Fitzy Member Posts: 55
    edited May 2014

    Hi Susan, you're ILC like me. Sorry you've had mets so soon after your primary. 'Large and lazy', ILC is often slower to spread. I'm nearly 6 months out from my liver mets dx and have kept working and training. I have one day off a week for three weeks for my chemo (Abraxane) infusions. Luckily, I have plenty of paid sick leave days that I can use. Abraxane has kept me stable so far and has been relatively easy to tolerate. Good luck with treatment, there are lots of women on the boards, to give us hope, that have had liver mets for 3+ years and still doing OK.

  • Woodylb
    Woodylb Member Posts: 935
    edited May 2014

    JSCindia, as it appears your mom is a long term cancer survivor God bless her. I don't believe in doctors predicting the life span of anyone as each person respond to medication differently visceral mets ( lungs, liver , bones) are usually the worst prognosis for patients but with the news treatments and each year there is a new one the life span is expanding your mom had already the mets to the lungs and she still survived and i hope they will find the right med for her liver mets. There is nothing you can do at this level except be there for her support her and pray and most importantly is to habe faith and keep hour spirits and her up , as this will help a lot. Best wishes for her in battling this beast. 

  • Woodylb
    Woodylb Member Posts: 935
    edited May 2014

    Hi Suzan , I am sorry you had to join this thread, but there are a lot of women on this board who made it far more then a year with liver mets. Even though ILC is sneaky and unpredictable it grows usually fairly slow to medium, i am sure your doctors will find the right meds for you to keep it stable. Mine came back after three years of the original dx and i have 10 tumors spread on both lobes with unconfirmed bone mets, until now i seem to be doing ok and fairly well with minimal symptoms or pain, thank god. Tomorrow i get my last session of chemo , than scans. So don't feel alone and most importantly don't become desperate as it will effect your overall health. I wish you good luck on your treatment and a stable condition. :)

  • ronniekay
    ronniekay Member Posts: 657
    edited May 2014

    Leftfoot...it's so great to hear you're doing well!  It's been a while since we've been on the same page :)   Navelbine/perj/hercep are keeping me stable...with mostly a bit of fatigue & other minor ses that I complain about at various times, but am actually doing quite well with!  

    Susan....glad Fitzy can share ILC info with you!  I stayed as far away from the stage 4 board as possible, until the day I was diagnosed stage 4 (my 3rd go-round).  I came home from my appt & the first thing I did was log on!  And the 1st post I saw was from Denny-saying, "10 years today!  Living with liver mets!"   My heart sang & I said my prayers...asking for 10 years!!!  I was told to quit my job & spend the time I had left with my loved ones.  I quit my job (awesome disability ins & now ss as stage 4), and am 1year 4 months out...planning on 10x whatever I can get!  There's always hope!!!!   

    Woody...praying for a plane ticket in your hand real soon!!!!!

  • JourneyOn
    JourneyOn Member Posts: 2
    edited May 2014

    Hi Susan

    I'm sorry to hear of your diagnosis.  I had my primary dx  -- stage IIB just 2 -years ago yesterday -- May 5, 2012.  I was recently diagnosed with Stage IV and liver mets all over -- and some :activity in my clavical."  My dr started me on Xeloda -- 2x/day / 7 days on and 7 days off.  I was taking 3 in the am and 3 in the evening.  The fatigue in the morning was debilating for me and the hands/feet were already getting bad so she took be down to 2/3.  Much better.

    I know everyone has their own requirements, etc.  As for work -- I have been in a rather high-stress communications role, so immmediately scaled back to 20 hours per week.  I am now out of that game entirerly and pursuing some writing and other projects that have been a life dream.  The thing that I find so odd, and frankly lonely -- about this metastic thing -- is because so many of us are not taking infusions (thank goodness) that the treatment is not as obvious to myself and the outside world.  Good right?  Of course, but I find I need to remind myself to take extra care -- diet, exercise etc -- as aside from the SE -- it is almost like taking vitamins for me.  I don't mean to diminish this -- just saying that without the routine of packing my infusion bag, donning my chemo cap etc -- I am having to take more care around the health and spiritual healing this time.  Not knowing what the future holds, I have decided to "go while the going is good" and that doesn't include sitting in an office cube -- and no -- our financial future is not set, but we are leaving this one to the universe this time....

    Good luck with your treatment.  Does the above resonate with anyone else?

  • Woodylb
    Woodylb Member Posts: 935
    edited May 2014

    Ronniekay , thanks for your kind wishes for  a plane ticket as you will be along there with me . 🙏

  • ronniekay
    ronniekay Member Posts: 657
    edited May 2014

    Chemo & onc appt today...of course last month scores were best ever...saw a teeny boost on numbers on enzymes so hoping markers are still good. Always normal...just like LOW normal!

    Thinking of everyone!

  • JimmieBell
    JimmieBell Member Posts: 59
    edited May 2014

    Saw my onc for scan results today and There is progression in my liver mets. Sigh.

    Will keep taking A/A combo but increase dose. Currently 5mg/day going uo to 10. Meantime we are exploring clinical trials. 

    Four months stable was nice.

  • ronniekay
    ronniekay Member Posts: 657
    edited May 2014

    Dang it, Jimmie...we'll just wait for the higher dose to start working magic!! Were you feeling like something wasn't quite right?  Hope the higher dose is kind to you & nasty to the mets!  XOXO

  • Fitzy
    Fitzy Member Posts: 55
    edited May 2014

    Hoping the higher dose gets you stable again, or better still, shrinkage, JimmieBell.

  • SyrMom
    SyrMom Member Posts: 575
    edited May 2014

    Jimmiebell, hang in there, I understand the feeling as I went through approx. 18 mo of progression before getting some stable results.  There could be the perfect trial out there for you! 

    I'm getting scanned on Monday, so keeping fingers crossed.

  • JimmieBell
    JimmieBell Member Posts: 59
    edited May 2014

    Thanks, SyrMom.  Fingers crossed!

  • ronniekay
    ronniekay Member Posts: 657
    edited May 2014

    Will be sending positive vibes through the airwaves on Monday, SyrMom.

  • Woodylb
    Woodylb Member Posts: 935
    edited May 2014

    Syrmom, praying you'll hear and see good results on monday . Keep us updated. Have a nice weekend.

  • SyrMom
    SyrMom Member Posts: 575
    edited May 2014

    Thanks RonnieKay & Woodylb!  Chemo brain getting to me today; feel demented! Ugh.Sick

  • jocanuck1951
    jocanuck1951 Member Posts: 214
    edited May 2014

    sheesh...that sucks Jimmiebell!  Hopefully the increase will halt the progression.

    My scans from 2 weeks ago showed my liver as stable, next ones are in August.  It's very tough living from scan to scan...we surely have "true grit" 

    Here's to good results on Monday Syrmom!

  • ronniekay
    ronniekay Member Posts: 657
    edited May 2014

    Happy Dancing in my underwear for you Jo!!!   Sounds demented too, doesn't it, SyrMom...was just getting into jammies & saw my cell phone so logged on and saw stable news!   I saw onc yesterday & she thinks I'm doing great....so I can't complain, although I do :>.  Anyhoo...off to bed.  Love to all!

  • Woodylb
    Woodylb Member Posts: 935
    edited May 2014

    Ronniekay, wooohoooo for the stable news !!! I hope you keep doing great and the beast takes a nap for as long as possible.

    Wishing you happy news Syrmom on monday 

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

    My scan results showed that I was stable as well.  

    Hugs to you all.  Hoping to see all of you reach those results as well.

  • bestock
    bestock Member Posts: 186
    edited May 2014

    Hi all..... I have been on the site a lot but just found this thread... OH I had progression while on Falsodex, it was getting out of control, so now on strong stuff (see my history) I have had a hard time with Nuelasta, and this last chemo time had to get two units of blood.(anemia) I just want to get this disease stable??? I have tingling in my lymphodema arm and my fingers feel dead( tips have no feeling ) have any of you had the Epirubicon and cytoxyan... it is harsh...----Loopy ca 27/29 is going down from 200 to 83, and my scans show shrinkage ..YAY

    thanks

  • Kym61
    Kym61 Member Posts: 1
    edited May 2014

    Hi JourneyOn,

    If I didn't know better, I'd thought I'd written your post. Seems our scenario mirrors one another. I've been a lurker for far too long. Posted when I was first diagnosed and first began chemo in Jan '11 for IIb, chemo,lumpectomy, rads. Then a clavicle recurrence treated with Xeloda/Ixempra. By the 3rd cycle had neumonic fever and stopped, Ixempra was awful. PET eventially showed NED for almost 1 year, brings us to May of '13 (along with a job downsize) and then showed 2 tiny liver mets.  Been treating with xeloda, 2000/2x day 7on/7off.  Felt like a rock star. Like you, felt like taking a vitamin (until some progression and upped to 2300 2x/day, then the HFS began for about 6 weeks). Managed that fairly well, cream/baggies/socks worked very well, almost back to normal.  PET last week showed progression and some node activity in my chest. Now I'm decided between Navelbine and Gemzar, I'll need to have a port re-inserted.  Turns out my new job was eliminated last week, 2 days before the newest diagnosis, so I won't have the added pressure of working while deciding and beginnning this next course of treatment. I was in agency advertising, then on to visual communications producer. 

    I just learned of the Liver Cancer Center at Johns Hopkins in Baltimore, so I've inquired. Their are so many new liver treatments out there, wanted to see if any can be useful with stage 4 BC as a cause. Waiting on their call to set the appt.  I'll still need to address the chest nodes and will also move forward in the meantime with the port.

    Healthy eating, exercise, plenty of rest and a good attitude will be continue to a focal point for me. I've learned so much already from everyone here, it was time that I jump in and perhaps share with others.

     

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