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How are people with liver mets doing?

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Comments

  • Modum
    Modum Member Posts: 40
    edited June 2015

    Hi Ladies!

    I received a frustrating phone call from my med onc yesterday. He called (which I appreciate) to give me my liver biopsy results- finally! But, he said it showed no cancer. My scans have showed dots everywhere and small lesions in a few places. This is my second liver biopsy to come back no cancer. I realize I am great at hitting the smallest odds ("you have lessthan 10% chance of recurrence...." ha), but seriously?!?

    I hate being glass half empty, but I am not happy. I am at the top centre in my area. You would think their success rate would be a little better?! I guess I was counting on this test to give some answers on why my CT Scans keep saying "everything else stable, but small progressions in the liver"....I am frustrated. Maybe taxol has done its job quickly and knocked the cells out? I get my CT Scan results this Tuesday.

    Has anyone else kept getting "clear" biopsies? My doctor is positive there are diffuse mets there....

    For that matter has anyone else had 2 or more biopsies to the same site? I told him I was willing to do it again, if it would give me some answers. It kept me out of a clinical trial last year because the first biopsy came back negative. Very frustrated! (and I should be happy, but I am not)

    Thanks, needed to vent!

    Maureen

  • mdillard04
    mdillard04 Member Posts: 83
    edited June 2015


    Hi Ladies

    I am 36, no kids, not married and was diagnosed with mets to the liver on June 8, 2015 after my doctor told me a year and four months prior that it was a cyst and I had nothing to worry about and that I was fine, so I didn't. I trusted him. Now look where I am...wondering how long I have left, will never be a mother, why marry as I will eventually leave my husband a widower? My family is so positive and telling me I will be around for a very long time. They are a wreck as well as I am the baby. Well I hope that is the case as there is so much that I wan't to see and do. I have two very small lesions in my liver and have no idea how long they have been there. I took my first Zoladex shot yesterday...and cried as I knew motherhood was gone for me. Ibrance and Letrozole started today. I am praying for as little side effects as possible. I just want to have a good quality of life and to be happy. I want to live!!! I want to see my dreams come true....I am resting on faith, strength, and courage.

    Monika

  • apackoftwo
    apackoftwo Member Posts: 64
    edited June 2015

    Hi Monika - same thing happened to me - they saw something on my liver 1 1/2 year ago and I was told not to worry it was something similar to a varicose vein - now I have 2 liver mets - one 5 cm - frustrating to say the least. But do not despair - first of all you are young and I assume otherwise healthy so you will probably tolerate treatment well - and there are many treatments - also this site and the women here are amazing - so much knowledge, compassion and hope - please stay tuned. The scary parts of stage IV seem to come and go, at least for me - I so much relate to your pain and fear of loss, but hang in there - you will find many have your back, sending you hope and love. Susie

  • Woodylb
    Woodylb Member Posts: 935
    edited June 2015



    Hi Modum,

    I can understand your frustration and it is valid, they should be able to extract a good specimen for a good result. These things happen though, i would advise you to do another one and maybe choose a different person to perform the biopsy. If the dcotor thinks it is liver mets then it is most likely what he says it is. I hope you soon find a way to put your mind at ease and you get proper treatment or get a confirmation that it is not what it seems to be.

  • Woodylb
    Woodylb Member Posts: 935
    edited June 2015



    Hi Monika,

    I am so sorry you had to join our club here , but you did right by coming here first. It is very scary to find out you are stage four with liver mets specially at such a young age. But do not dispair. Some people live with stage four for years and a lot of new treatments are available. You will meet many ladies here who have been stage IV for a long while. I am not telling you it is a joy ride but nevertheless it is doable.

    Once you are stable you can have a good quality of life . It has its ups and down, but the important thing is not to let the disease take over . Surround your self with family and friends and people who give you support and not people who do not understand. Keep your faith strong and your will to live stronger.

    You are young and even though treatments are sometimes hard being young is an advantage.

    You can come here whenever you feel like venting or just want to connect nd you will find how wonderful and supportive these ladies are.

    I pray your treatment goes well and works on your mets wonders. I took femara for three years and it was ok and the side effects were tolerable. Good luck to you and prayers that soon you will get to a good place in which you feel comfortable .

  • mdillard04
    mdillard04 Member Posts: 83
    edited June 2015

    Thanks Ladies for the support! I am sure I will find myself here often as you ladies truly understand the path that I am beginning to navigate!

  • tryn2staycalm
    tryn2staycalm Member Posts: 470
    edited June 2015


    Hi Ladies,

    I just completed my Weekly Taxol #3, and will continue with weekly Friday Taxol without a Friday off for now.  Good news is my cough is better.  Praying that it is also working on my liver mets which is the most concerning for my MO as I was told it is the most lethal of all my mets and it has been spreading fast and furious in the last while.  The bone mets pain is being controlled better now with both short term and long term release hydromorph Contin 3mg and 1 mg.  but if I'm too active I still have break through pain.  So I'm hoping that the Taxol works on the bone mets also.  My hip mets also still ache but that can be another side from the Taxol with the arthritis worsening.  It takes every bit of my energy now to fight this.  Lots of bed rest.  Each day after infusion a bit stronger. 

    Cathy

  • sandilee
    sandilee Member Posts: 436
    edited June 2015

    Monika- What a nightmare for you. I''m so sorry you had to find yourself here. I have relatively new liver mets- discovered earlier this year after three years of fighting bone mets. My doc just put me on Ibrance/Letrozole also. I've just started my third cycle, and it is pretty easy on me so far. I really hope it works on my liver, and my doc is optimistic.

    Cathy- I'm so glad the pain is starting to let up with the Taxol. It sounds like it's starting to do it's job. Hang in there! We're here for you.

  • Woodylb
    Woodylb Member Posts: 935
    edited June 2015


    Cathy, i am happy to know you are feeling better and the pain is under control on Taxol. Hang in there, i finished taxol a month ago and it did a great job on my liver and bone mets. I hope you get the same results. The road is a bit tough but if it works well it would all be worth it. Prayers to you.

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited June 2015

    so I just got a message that I have an appointment at the U of W on tuesday. I had no idea I had one as I didn't schedule it. I assume it was automatic as I am due to be having either a liver resection or ablation on July 8th. I am not in a funk. It hit home that I am having yet another surgery. I feel like I just had one evern though it was in February. I am tired of all of this. I just wanted a little time to recouperate. Iguess 6 months will have to do. I know these procedures are probably less of a big deal than brain surgery and even a double mastectomy, but it feels different. I think because I am just tired. Not scared, just tired. Tired of scrambling to find child care coverage. I just got back into my workout schedule and up to my normal only to have to take time off again. I feel ike I just asked my friends around me to help me out as I recovered from my brain surgery. Now I have to do it again. I had to ask my step mom (whom I am not close to and doens't have a close relationshiop with my kids) to come up and help me out for the week of my surgery. My husband has to go out of town for buisness. My mother in law is taking care of her husband ( who is waiting to get listed on a lung transplant list). My sister in laws each took time out to care for me in Feb and can't come again so soon. I have no parents of my own and my siser isn't an option. so I am having a hard time this go round. Life just keeps going Amd the kids are out for th summer which means the days are very l ong.


    thanks for the vent. tomorrow I tlak with oncologist about best route for surgery and what changes in meds if any she wants. Ugh.

  • ronniekay
    ronniekay Member Posts: 657
    edited June 2015

    Leftfoot...I'm in Renton, a grandma, retired school secretary, love kids & pizza...I'm serious when I say call me..or pm me (I can give you my #). I can't imagine juggling everything w/kiddos, but you're doing it & will continue for a very long time! Thinking of you...good luck at UW...my stomping grounds!

    Yes Shetland! He's the author...and didn't know that he'd passed...love his insight on so many levels.

    Modum...A scan should show them exactly where to biopsy...this is so weird...if it's true-no mets-they'd better be sure. And then there's packoftwo & mdillard....makes one question!!!! It's our lives, not the game of operation!!!

    Tryn...you got this! Hang in there...mets shrinking as we type!

    Leah...TM's lower...you're right...it doesn't make sense. I hate this stuff. Praying, praying.

    Feeling very down lately...got shake it...dang. DH just doesn't get what's up since everything's going well...me neither. It's such a crappy place to be sometimes...but it's where we're at so...sorry guys, pity party.

  • Woodylb
    Woodylb Member Posts: 935
    edited June 2015



    Leftfoot,

    I am so sorry you are going through this alone , you are right sometimes it gets too much specially when you have children . I hope you soon find someone to take care of your children so you can have the operation and get some rest of it all for a while. My prayers are with you. ((HUGS))

  • spicypetunia
    spicypetunia Member Posts: 47
    edited June 2015

    I'm nearly a 1.5yrs since dx (stage iv from the start, early 30s) and wanted to say how much I've learned here - an incredible amount - both technical medical stuff as well as about the emotional roller coaster. what I've heard so many here say has proven true for me, too. it does somehow just get easier than at the beginning, even if not necessarily better. I've found it so helpful to work on psychological conditioning (sometimes even tougher than the physical exercising!) - resiliency seems the word of the year.

    it is not easy. and though they truly suck, sometimes a pity party is the best outlet. I see it like a 'good, long cry' and if I'm lucky, it helps me through whatever was snagging me faster than just tolerating the growing, gloomy heaviness. sometimes, it just is what it is. RonnieKay, I'm hoping your pity party pushes you back into a better place.

    scans again came out indeterminate. liver lit-up in exactly the same place on repeated PET and MRI showed 'something' in the corresponding area - but not conclusive for mets. MO sent scans on to liver doc and they agreed it best to closely follow until more can be ascertained. while I know I should be thrilled the area didn't seem to grow after 3 months, I'm still kinda bummed it wasn't just a false-positive. it's hard to think this is anything other than early signs of progression - but, I guess that's my glass half empty perspective. my family's been saying no definite bad news is good news; while I know I agree, I'm not really in the mood to put up balloons and celebrate. and I'm frustrated with myself for that.

    so, scans again in September. in the meantime, dh & I are doing our best to live as we want and not sweat it until there's something to do about it. that's something I learned was possible from so many of you ladies. I can't thank you enough.


  • spicypetunia
    spicypetunia Member Posts: 47
    edited June 2015

    leftfoot - best of luck, sounds like a tough decision. I haven't had resection or ablation, but fwiw, I've heard they don't definitely require a difficult recovery. I'm wishing you a successful liver met-a*s-kicking procedure and a shockingly fast and easy recovery.

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited June 2015

    Met with oncologist and a IR today. Oncologist was saying she would lean towards resection so that they can have a definite tissue type. IR was very nice and explained things in a wonderful way. Much better than the liver specialists at the U of W. If my decision was based on presentation and approacability, I would probably choose him. But, he did say that he wasn't sure he could get a good biopsy as they place the ablation needle first. This might effect his abilty to get a good sample for biopsy. He also said he woudl do the procedure under anathesisa so that means it is not altogether different than a surgical resection. I am leaning towards resection so that I can know for sure what type of tumor we are dealing with. If my Her2 + status has changed, it would effect what type of medicine we move on to. Still thinking and will make final decision tomorrow. If I go with resection, the surgery will be July 8th. And I am holding out a slim hope that this is not cancer. My brain wasn't so maybe this is not as well. My oncologist said this was another reason to get the tissure.

    spicypetunia- I think it is a good thing they want to watch your spot. They weren't messing around with my spot so it gives me hope yours is nothing.


    thanks everyone



  • ellamilana
    ellamilana Member Posts: 59
    edited June 2015

    Leftfoot=

    Is Laparoscopy an option? What is the recovery time after resection? I had done laparoscopy and was told that resection recovery is very tough (6-8 weeks). If you did not ask yet, see what they say.

    ~E

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited June 2015

    Thanks ellamilania.see the surgeon tomorrow so I'll ask. It will be laparoscopic. it's inly a partial resection so hoping that means less than a 6-8 week recovery.


    Did you have ablation or resection

  • tryn2staycalm
    tryn2staycalm Member Posts: 470
    edited June 2015


    Hi Ladies... it's Tuesday and this is the day I start to feel more like myself and less like a chemo patient.  Thank you ladies so much.  I have to say of all the Favorite threads this is one that makes me smile and appreciate the kindness and support so very much.  I learn so much here too and it makes me feel more like I can keep fighting and get past this "bump in the road".  Yes the pain is more managed now as long as I am not too active.  I am hoping that yes it is shrinking the liver and bone mets and I feel my lung mets are much better as my cough is better (almost gone).  However the Hydromorph Contin 3mg and the Hydromorphone 1 mg is such a relief to my pain also.  You ladies are great.  Thank you and I pray you all are repaid for your kindness with many many years of stability!!!  Your support means so much to me. THANK YOU!!  Leftfoot - I'm praying for you too.. may you have better days ahead.

    Spicey- I hope the cry helped.  You are not alone here.  Sorry your so young with this on your plate.  I'd just like to hold you and comfort you.  Hugs.

    Cathy

  • Woodylb
    Woodylb Member Posts: 935
    edited June 2015



    Spicey,

    Good to hear from you. It is very upsetting when results are inconclusive. It is unsettling. I had the same thing at my second dx the liver showed first , the bones where inconclusive on both MRI and bone scan. However, on the PET the bones showed no activity, so mets were ruled out but three months later they were lit like a xmas tree. This is to say it could be either. But you have made it so far , you will make it much further God's willing. I pray your results are a faulse alarm. ((HUGS)).

  • Woodylb
    Woodylb Member Posts: 935
    edited June 2015



    Leftfoot,

    I hope your docs will do what is best for you. Prayers that you will prevail over this.

  • ellamilana
    ellamilana Member Posts: 59
    edited June 2015

    Leftfoot=

    I had laparoscopy with RFA and was out and about in a week (carefully), and in a month a was back to my swimming pool.

    ~e

    xoxox

  • fhaido
    fhaido Member Posts: 10
    edited June 2015

    Hi ladies, I have been following all of your stories and you are all an inspiration, true warriors. My mom is also dealing with liver and bone mets for the past year. Her last scan besides showing significant progression it also shows that she has developed pseudocirrhosis. I know it is serious and I have been crying all afternoon. Anyone with experiences with pseudocirrhosis? Thank you

  • Woodylb
    Woodylb Member Posts: 935
    edited June 2015

    Fhaido,

    Thank you for your kindness and nice words. I am so sorry about your mom, cancer really sucks. I do not know personally anyone here who had this condition, but i know about it in general. The pseudo before cirrhosis is an imaging diagnosis. The key word is cirrhosis and it can cause portal vein hypertension. I truly hope the doctors find a way to treat your mom. I pray for her and you. I am glad you came here , even if we cannot help but we are good listeners if you want to vent. God be with you. Hugs.

  • Modum
    Modum Member Posts: 40
    edited July 2015

    Very sad today, a very close friend with stage 4 bone only disease passed away last night. She was ok 2 months ago and deteriorated until passing last night. She was 5 yrs from diagnosis. Stupid cancer you took another great and lovely person.

    Then I saw my med onc today and got the good news bad news results. He gave me an 8.5 out of 10 after 3 cycles of taxol. I am stable (again) in lungs and bones, but my liver...keeps on giving me grief! 3 out the 5 lesions have decreased, but 2 have increased a bit- what a crazy disease! Still asymptomatic.

    The good news is (?) that they did get cells from my biopsy and my receptors have not changed, still ER+ HER2-. Because of positive tissue, I can now go on for molecular testing and see if I have any other mutations going on.

    Sending my prayers and thoughts out to my fallen friend and to all of you ladies here. May we continue on in decent shape. Not much else to say today-

    Maureen


  • fhaido
    fhaido Member Posts: 10
    edited July 2015

    Thanks Woody for the love. Things are not looking good based on what I am reading. Now we need to see how the onc wants to proceed.

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited July 2015

    just sending cyber hugs to everyone.

  • Woodylb
    Woodylb Member Posts: 935
    edited July 2015


    Maureen ,

    I an so sorry about your friend may she rest in peace. Unfortunately this disease continues to harvest so many beautiful souls.

    I am happy for your good news, as for the liver well, it is harder for it to get stable. At least they got the biopsy right which will allow you to do some further testing which could help in the way to manage your disease. I had a genomic testing done and it helped me greatly since my FISH showed negativity for HER2 but ky genomic testing showed extreme positivity. Thanks be to God i am now NED with no evidence of disease. I pray God you get to this status too and. Hope for all of us we continue to do well. I am asymptomatic too even though my liver had around 15 tumor. So have faith and i hope soon you will get all god news.

  • Woodylb
    Woodylb Member Posts: 935
    edited July 2015



    Leftfoot,

    Right back at you ! Keep us posted. Sending prayers.

  • Woodylb
    Woodylb Member Posts: 935
    edited July 2015


    Fhaido,

    You are welcome anytime. I hope her onc finds a way to help her. God be with you and her , please keep us informed. Hugs.

  • tryn2staycalm
    tryn2staycalm Member Posts: 470
    edited July 2015


    Modum - So very sad and sorry to hear of your friends passing.  One of us.  Take my hand and now lets kick cancers butt hard and steady.  I'm doing Taxol with you.  We are sisters now.  Glad to hear of some good news for you but not the bad.  Hugs to you and all the sisters.

    Cathy

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