How are people with liver mets doing?

Options
1…130131133135136…652

Comments

  • zarovka
    zarovka Member Posts: 3,607
    edited December 2016

    Mama - faslodex has always been a pretty solid second line treatment after letrozol. With the added ibrance it should be better. The question is whether those mets in your liver have joined a different team. If they have, there are a lot of options, but you've got a complex situation on your hands with two types of cancer. You really have to get a second opinion at this point. At a major cancer center. Schedule an appointment now so you are can walk right in when the diagnostics are done. There are a lot of cutting edge treatments and interesting trials available. No single doctor is going to understand everything.

    What a crappy way to start the holiday season. I do think the lumpectomy is a good idea. Think about it as a present.

    >Z<

    · Share on FacebookShare on Twitter
  • gramen
    gramen Member Posts: 179
    edited December 2016

    Sigh. Progression. 8 short months for Herceptin/Perjeta/Navelbine. I regret not doing Taxol instead, which worked before during neoadjuvant treatment. But diagnosed with liver mets within a year so was hoping that trying a different chemo was a better choice.

    Anyways, Dr said kadcyla or Xeloda/tykerb, but she favors kadcyla. Sigh. I appreciate any advice on this two choices. I'm crushed. The thought that this might actually be my last Christmas. I might not even make it to 40. This sucks.

    · Share on FacebookShare on Twitter
  • Mel26
    Mel26 Member Posts: 67
    edited December 2016

    Mama and garmen,

    I'm sorry for what you are going through. I have extensiver liver mets myself, difficult to treat. There are many treatment options and my wish for you is that the right one finds you. It appears it is confined to your livers only. That really helps with your prognosis. I've read about people who have survived 10+ years with this same diagnosis. Try to relax and find the beauty in the holidays

    Love to all of you! Mel

    · Share on FacebookShare on Twitter
  • kaayborg
    kaayborg Member Posts: 613
    edited December 2016

    Gramen and Alissa, my heart goes out to you. I don't have any treatment advice for you but do hope that you are able to find peace with this news. I really believe it's a momentary set-back...not the end. When is your 40th Gramen? Mine is June 1st. We are going to make it and for many more Christmases too.

    · Share on FacebookShare on Twitter
  • artistatheart
    artistatheart Member Posts: 2,176
    edited December 2016

    gramen,I'm so sorry you had to get this crummy news. But like Mel and kaayborg say, it is a setback, not the end. There are women who are still going 10 years later. You never really know how long you can keep going. (Which is part of the hell we live in our minds) But try and rally for the Holidays and get ready for the next phase. We are thinking of you...You too Mama, thinking of you. Mom, I just meant that since my last scan looked better I would rather stay with the current meds even if my Tm's go up again.

    · Share on FacebookShare on Twitter
  • gramen
    gramen Member Posts: 179
    edited December 2016

    thank you ladies. Going to try to make an appointment for a 2nd opinion, not sure how long that will take with the holidays. I do want to get started with the new treatment soon, like next week. Looked for trials last night and a lot of them require 2 previous treatments, H+P, and kadcyla, so it might make sense for me to try kadcyla next.

    Kaayborg making it to 40 is my symbolic goal :-) looking forward to congratulate you in June!! I turned 37 this year. Hubby slept in the couch and I found a little elf in my bed <3

    image

    · Share on FacebookShare on Twitter
  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited December 2016

    garmen- so sorry that you have to change courses yet again. I have been on Tykerb/Xeloda so can tell you about my experience if you want. I have yet to be on Kadcyla but that would be next for me. I have been on Xeloda now for 4 years. I stopped Tykerb in March. The good news is that I have been NED since and doing fine. Xeloda and Xeldoa/Tykerb really got rid of my mets in my liver.

    I hear great things about Kadcyla. I do know that like Herceptin, you will have to watch your heart function if you go on Kadcyla.

    Hugs to you

    · Share on FacebookShare on Twitter
  • gramen
    gramen Member Posts: 179
    edited December 2016

    leftfootforward, your experience is encouraging. May I ask why you had Xeloda Tykerb before Kadcyla? Is it because it is "newer" and it wasn't the standard 4 years ago?

    · Share on FacebookShare on Twitter
  • zarovka
    zarovka Member Posts: 3,607
    edited December 2016

    Gramen - no advice except GET A SECOND AND THIRD OPINION. Whatever it takes until you are completely comfortable with the strategy. It's worth a delay and frankly some time off treatments during the holiday is something we should all consider.

    You are in my thoughts. I expect this is just a bump in the road and you'll be watching your little elf graduate from college before you know it.

    Praying for your complete healing.

    >Z<

    · Share on FacebookShare on Twitter
  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited December 2016

    garmen/- the main reason was that my EF had fallen on herceptin and I had to discontinue it. Kadcyla is also cardio toxic so they started me on Xeloda/tykerb to give my heart a break. Kadcyla was new enough that they felt this was the best plan for me.

    If Xeloda starts to be less successful at keeping my cancer at bay, I believe Kadcyla will probably be my next drug.


    · Share on FacebookShare on Twitter
  • gramen
    gramen Member Posts: 179
    edited December 2016

    thank you for sharing leftfootforward!

    Thank you all for the words of support and advice. One day at a time one day at a time

    · Share on FacebookShare on Twitter
  • artistatheart
    artistatheart Member Posts: 2,176
    edited December 2016

    "WORD" gramen!

    · Share on FacebookShare on Twitter
  • LvinAZ44
    LvinAZ44 Member Posts: 213
    edited December 2016

    hi all. Happy holidays. Well I have enjoyed normal markers for 5 months today I found out they went up to 74. I'm shaking I'm so nervous. Have a scan friday. I hope the havelan hasnt stopped working. I'm freaking out!!!

    · Share on FacebookShare on Twitter
  • Husband11
    Husband11 Member Posts: 2,264
    edited December 2016

    Latest worrisome development in my wife's liver, is that although her tumor markers have been steadily falling, liver values improving and some in normal range, they have recently spotted some small nodules in her liver. It appears the original small tumors have disappeared. The Onc doesn't think the nodules are cancer, he thinks its most likely regenerative nodules. Her tumor markers have fallen from in the hundreds, to down in the 20's.

    · Share on FacebookShare on Twitter
  • artistatheart
    artistatheart Member Posts: 2,176
    edited December 2016

    Timothy, all in all that sounds like pretty good news? If cancer tumors have disappeared and nodules are non-cancerous that sounds good.....

    · Share on FacebookShare on Twitter
  • kaayborg
    kaayborg Member Posts: 613
    edited December 2016

    I'm with Artist, Timothy. I think that sounds good.

    Livn, urggghhh! So sorry you have to deal with this uncertainty over the holidays. Waiting for you to share your great results. GREAT results!

    · Share on FacebookShare on Twitter
  • zarovka
    zarovka Member Posts: 3,607
    edited December 2016

    Timothy - that sounds like a good scan.

    Livin - ignore the tumor markers. glad you have a scan soon. i just emerged from scan hell myself to find I am stable. My tumor markers have risen but cancer is not progressing.

    >Z<

    · Share on FacebookShare on Twitter
  • Husband11
    Husband11 Member Posts: 2,264
    edited December 2016

    Zarovka, I am so relieved to hear you are stable.

    · Share on FacebookShare on Twitter
  • LvinAZ44
    LvinAZ44 Member Posts: 213
    edited December 2016

    zarovka that's good news. My markers were up to just below 40 and scan was clean hoping for same. Fingers crossed.

    · Share on FacebookShare on Twitter
  • zarovka
    zarovka Member Posts: 3,607
    edited December 2016

    Timothy - thank you. My husband is from Winnipeg. We visit occasionally - usually when it is really cold or infested with caterpillars. Good people.

    I appreciate the support this week from everyone. BCO always helps but this week has been a bit more than I could do on my own.

    >Z<

    · Share on FacebookShare on Twitter
  • artistatheart
    artistatheart Member Posts: 2,176
    edited December 2016

    Yay! Happy Dance Z! So glad you can relax a little enjoy your trip!

    · Share on FacebookShare on Twitter
  • babs6287
    babs6287 Member Posts: 2,021
    edited December 2016

    Z. Haven't been on in awhile but just saw your great news!!!!! Happy Dance time!!!

    Bab

    · Share on FacebookShare on Twitter
  • kaayborg
    kaayborg Member Posts: 613
    edited December 2016

    So glad to hear it Z! You are a force!

    · Share on FacebookShare on Twitter
  • Husband11
    Husband11 Member Posts: 2,264
    edited December 2016

    Z- From Winnipeg eh? Small world. I know its always a busy time when on a visit, but if you ever find yourself in Winnipeg and have some time to kill, my wife and I would love to meet up with you and your husband for a cup of coffee.

    · Share on FacebookShare on Twitter
  • Wendy3
    Wendy3 Member Posts: 1,012
    edited December 2016

    Z you made my day

    · Share on FacebookShare on Twitter
  • Mel26
    Mel26 Member Posts: 67
    edited December 2016

    Awesome Z! Enjoy the holidays!!

    · Share on FacebookShare on Twitter
  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited December 2016

    Yay Z

    · Share on FacebookShare on Twitter
  • intothewoods
    intothewoods Member Posts: 449
    edited December 2016

    Livin, I hope your scan brings good results! zarokva congrats!

    I should be happy too since my recent scan results after starting chemo are stable to slightly improved but I need some encouragement and maybe advice. My onc wants me to continue on doxil and cytoxan until it's not working or doxil becomes toxic. I've had 6 cycles- every three weeks. With each cycle my dyspepsia lasts longer. Prilosec has helped a bit with the severity but I'm having more days of symptoms. Onc said to try twice a day for 10 days but I stopped around day 7 because it didn't seem to help. I miss Faslodex. I know some return to a hormonal and I hope to be able to do that too but for now the chemo has me down. And I feel like a whiner because dyspepsia is my only side-effect other than some fatigue and chemo brain which is fairly significant and impacting my work.

    any words of wisdom appreciated

    Lisa


    · Share on FacebookShare on Twitter
  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited December 2016

    Lisa- glad to hear you are stable. That being said, you are the patient. It's your quality of life. keep sticking up for yourself. I know MO like to stick with a treatment until it's not working, but it sounds like to or you it's not working. I am hopeful someone here on the boar can help you make your current treatment tolerable. We are here for you.,


    Best wishes and hug




    · Share on FacebookShare on Twitter
  • LvinAZ44
    LvinAZ44 Member Posts: 213
    edited December 2016

    hello all. Well I had my CT scan today and doctor's office was kind enough to call to let me know scan is clear and I am still stable😄

    Merry Merry everyone. May we all start the year stable and feeling good. Here's to kicking butt in 2017.

    · Share on FacebookShare on Twitter

Categories