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How are people with liver mets doing?

blondie1
blondie1 Member Posts: 5

I continue to be very scared once I found my liver mets progressed after having to go off doxil. I am hoping to find some support in alleviating my deep seated fears by hearing other stories of people living and dealing with liver mets. My onc says I have such a petite frame (105) that an enlarged liver will definitely cause me some pain until chemo takes care of it.



How are others doing and getting through this with a positive attitude?

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Comments

  • MamaPeg2
    MamaPeg2 Member Posts: 19
    edited August 2013

    I have liver mets. On Xeloda since June. Had my 1st CT scan today to get an update. From what I have read about Xeloda, sometimes there isn't any change at first but later, after a few more rounds, tumors shrink or are gone. I have had lots of side effects, so not looking for improvement yet. Actually, never had any liver pain.

  • MaryGLA
    MaryGLA Member Posts: 18
    edited August 2013

    I was diagnosed with liver mets two years and three months ago, not that I'm counting. They have grown and shrunk with various treatments, but I have only had pain once for about a week when abraxane/Avastin stopped working and we switched to Xeloda. I have been on gemzar/carboplatin for the past year and there is currently no evidence of disease in my liver.



    Dilaudid took care of the pain while we waited for the Xeloda to kick in. You should not have to suffer if you have proper pain management. That's what my doctor tells me, anyway. I am 5'8" and weigh 120. Not sure what size has to do with pain. It's not like we have giant-sized organs in petite bodies!



    Good luck! I am positive most of the time, but sometimes I get a little down. Then I just cry it out on my husband's shoulder and try to move past it. Hang in there! What is your next chemo going to be?

  • Trish03
    Trish03 Member Posts: 65
    edited August 2013

    Blonde, thanks for starting this thread. I was dx with liver mets the end of May, and I would like to hear how others are doing. I have my first scans Monday after 3 rounds of perjeta/herceptin/taxotere. Liver enzymes have dropped to normal range, so I hope this results in good scans. I had a lot of pain at first, but it went away shortly after starting chemo. You're right, liver mets are very scary. I hope others will share their stories.

  • OBXK
    OBXK Member Posts: 689
    edited August 2013

    I was dx about 10 months ago. No pain, and no luck with any drugs, I am triple negative.

    I just found out that I have the antigen needed for a trial - the drug is xtandi. It is used to treat prostate cancer.

    I am very upbeat. I am also very aware that my days are numbered. So I just enjoy them as they come.

  • gonegirl
    gonegirl Member Posts: 1,022
    edited August 2013

    Liver mets from start. Liver covered with spots. Taxol with Herceptin for 5 months. Now just Herceptin. My liver did hurt. I think it depends on how swollen liver gets, not size of body. My liver would hurt after each Taxol. I took that as sign that chemo was worked. My liver enzymes and tumor markers dropped with each treatment. I've talked to 4 women who are more than 10 years out from liver mets.

  • nancyh
    nancyh Member Posts: 185
    edited August 2013

    I'm nearly 4 years out with liver mets, still going strong.  I've been through several hormonal therapies and half a dozen chemos or so, but my onc says we still have lots of tools in the arsenal.  Hang in there!

  • MamaPeg2
    MamaPeg2 Member Posts: 19
    edited August 2013

    MaryGLA - why did you go off the Xeloda?

    Two advantages of Xeloda are - pill form and my hair is growing.

  • OBXK
    OBXK Member Posts: 689
    edited August 2013

    Mama Peg - I had no real side effects from Xeloda. It didn't do a thing for me. Hope it is working for you!!!!

  • Mamita49
    Mamita49 Member Posts: 58
    edited August 2013

    I started back again with liver mets after almost 5 years in Dec. 2012.

    My Onc gave me the choice of changing from Tamox to Femera only, which would take a long time to work, or take the fast track and take Chemo ( Navalbine) to get rid of the buggers fast.

    He recom. Navalbine, and my last scan in July showed that I have no tumors in my liver, all resolved. He wanted me to get " maxim. results" and said that I would take the Navalbine for another 3 months, just to be sure. I do have no SE at all, and I must say, taking the Navalbine is like eating blueberries.  ( My tumor markers are presently at 15. 05) If this is still an indication that cells are in the blood system ? Maybe !!! After my next scan in 3 months, I will be on Femera. And than.......Who knows....

    Never felt a thing, besides the pain in the bottom going to the hospital, I feel great, just like the last 5 years.

  • blondie1
    blondie1 Member Posts: 5
    edited August 2013

    Thanks for the feedback. My onc started me on xeloda but because of liver enlargement causing me problems wants me on iv chemo to knock it out quicker then at some point go back on xeloda. It got enlarged while I was off chemo for a month doing radiation for back/leg pain. The enlargement is what causes the pain and bloating as it is pressing on other organs like the stomach. Even small meals can cause the bloating and pressure.



    Wishing you all the best with your journeys.

  • cmhartley
    cmhartley Member Posts: 23
    edited August 2013

    Hang in there! I have diffuse liver mets and as a result grade 4, early stage cirrhosis and right now happy to say doing great!!! I've been on taxol, abraxane, Xeloda and now Halaven. So far, Halaven seems to be the magic bullet for me for my bone marrow mets as well as those liver mets. I've been going at it for almost 4 yrs with a good quality of life.



    Hugs to all,

    Katie

  • NickyJ
    NickyJ Member Posts: 372
    edited August 2013

    Like Gritgirl, I had liver mets from the outset and did taxol /herceptin, now just herceptin. After taxol a PET scan showed my liver was clear and I am currently NED. I never had any pain from liver mets. Things can get better, you just need to find what works for you!

    Nicky

  • MaryGLA
    MaryGLA Member Posts: 18
    edited August 2013

    Mamapeg2- I progressed after 7 months on Xeloda. I switched to aromisin/affinitor for two months and had major progression- near liver failure. And then I started gem/carb which as been working for a year.

  • curveball
    curveball Member Posts: 1,583
    edited August 2013

    I was dx with liver mets in February, but I suspect they have been there all along. There is one big (4 cm) one medium (2.5 cm) three small (<1 cm) and lots of speckles (too small to measure, too many to count) They weren't found before I started chemo with CMF and don't show on the only scan I had before that time, so I don't know how or if the CMF affected them. After chemo I had anastrozole for several months but had slight progression between Feb and May. Since May I have been taking a different AI, plus another medication (see signature), and my most recent scan the middle of last month showed no progression since May. My onc told me at my May appointment to get scan results that they may even shrink with continued treatment. I also have suspicious lung speckles, but they are too small to biopsy, so it isn't known for sure whether they are mets or not.

    I have never had pain or symptoms from my liver mets.

  • KarenNY
    KarenNY Member Posts: 5
    edited August 2013

    I was encouraged by gritgirl's comment about 4 women living with liver mets 10 years already. I was diagnosed in 2006 with stage IIA then rediagnosed in 2012 with stage IV when it went to my liver. I was dealing with nausea but no other symptoms. After having my liver biopsies I developed a fever which lasted a few weeks. After my first round of Taxol, my fever and nausea disappeared. Taxol worked well for me, then I tried Faslodex. That didn't work, so I'm now taking abraxane which is working but has totally killed my taste buds/appetite. I never had any pain in my liver until I had the biopsies.

  • raro
    raro Member Posts: 78
    edited August 2013

    I am so grateful that you started this thread, Blondie...I've had bone mets for 4 years and now liver mets. I've had no pain, but a little nausea. I have 2 tumors, one 3 cm and one 1.8 cm, and fortunately that seems to be it.

    I'm intrigued by those of you who say their drs. told them that chemo works faster than hormonals. I've been on pretty much every hormonal and done okay on them, but have always had progression with chemo, which is why I'm nervous about starting it again. I've done xeloda, taxotere, abraxane, and the orginal TAC chemo, with lousy results. My onc wants to start me on Gemzar/carbo, unless the liver biopsy turns out to be positive HER-2. He said it changes sometimes, and if it does there are a bunch more options. 

    I am very heartened by hearing of those of you who have gotten to NED with chemo. It gives me hope!

  • Latte
    Latte Member Posts: 141
    edited August 2013

    Raro - our onc didn't say that chemo works better than hormonals, but rather that you can tell more quickly whether it is going to work or not. Most antihormonals take approx 2-3 months to kick in, and faslodex takes even longer. Just because you progressed on most chemos doesn't mean this isn't correct - the question is how quickly your onc realized that you progressed and changed your tx accordingly.

    In my case, tamox didn't work for me, and my onc put me on femara. After one month, my markers were still going up and I had progression in a scan, and my onc said it didn't mean it wasn't working but rather that I needed to give it another month or two and then scan again to see if it was working. We decided together not to wait, because I felt like I was wasting time, and to switch to chemo instead, where I saw improved results after one cycle already. I can go back to femara etc in future when my mets are quieter and the slower start doesn't matter.

    I hope this clarifies it for you.

  • lilsiskathy
    lilsiskathy Member Posts: 21
    edited August 2013

    I'm new to this site, but I was on zeloda.  I couldn't take the side effects.  I got really sick and could hardly walk, and it didn't shrink my tumors.  However I know everyone is different, I have read a lot of post here, and other sites, where it worked wonders.  I have had liver pain from the beginning.  I've had bc with liver mets for almost 5 yrs and have not been in remmission yet.  I am currently on afinitor.  I'm just getting tired of nothing working for me.  That doesn't mean it won't for you, even the side effects are different for everyone.  Damn cancer!  Got to hand it to it, it is smart.  Well good luck to you.

  • brandall
    brandall Member Posts: 97
    edited August 2013

    I was diagnosed as stage IV with liver mets pretty much out of the gate last July.  They resolved with chemo, which was 8 weeks dose dense ACT (the T being Taxol).  I was scanned after the AC cycles and the mets had shrunk a little, but not a lot.  After the Taxol they weren't there anymore, that was in December.  I've been NED since then, but just in the past few weeks I've had a lot of hip pain, so my PET was moved from September to next week.  My liver mets never hurt at all.  I've got my fingers crossed that NED didn't leave me ;)

  • brandall
    brandall Member Posts: 97
    edited August 2013

    Oh and lilsiskathy - 5 years with liver mets gives me hope!  Thanks for posting :)

  • blondie1
    blondie1 Member Posts: 5
    edited August 2013

    Thanks for the additional posts.  I keep searching for good news hoping it is out there for me.  My onc is looking for a chemo that will get me stable quickly and then going back to something that can be easily maintained.  There always seems to be a bump in the road over the last 2 years.  I wind up having to do radiation for a bone met causing me severe pain and then by the time I am done with the radiation the cancer starts progressing in other parts of my body.  It really sucks to feel I can't get it under control now after having it under control for so many years.  Prayers to all of you fighting this battle.

  • MamaPeg2
    MamaPeg2 Member Posts: 19
    edited August 2013

    GREAT NEWS! I had my 1st CT scan today after 3 rounds of Xeloda.

    1 small lesion stable

    1 small one GONE

    the larger one - shrank over 50%

    I was shocked! All the side effects were worth it! So far anyway!

  • Anko66
    Anko66 Member Posts: 30
    edited August 2013

    I was diagnosed with two small liver mets in Dec 2011, stage IV from the start.  Did about 20 weeks of Taxol and Herceptin which got me to NED (or so we thought).  Switched to Tamox and Herceptin but by Dec 2012, scans showed 5 mets in my liver. I was re-biopsed and the cancer had flipped to triple negative. I have now been on Taxol since January this year and I am stable - liver mets down to about three although not necessarily shrinkage in some.  I also started Avastin in June so I'm hoping for good news in my next scans in September.

    As for liver pain, I have occasionally felt pain after chemo - again I took this as a sign it was working.  The pain was specific to the biopsy site.

  • gonegirl
    gonegirl Member Posts: 1,022
    edited August 2013

    Mamapeg. That is wonderful

  • OBXK
    OBXK Member Posts: 689
    edited August 2013

    MamaPeg - wonderful news!

  • Trish03
    Trish03 Member Posts: 65
    edited August 2013

    Wow! It's wonderful hearing from so many ladies who have survived 4-5 years with liver mets. That's really encouraging for someone new to this journey. And 4 ladies who have survived 10 years is amazing! It's also great to hear of so many different treatments that have postive results. So far, my treatment is working, but I'm happy to know that if it stops, there are many more options.

    I had my first scans earlier this week, and after 3 cycles of Perjeta/Herceptin/Taxotere, my tumors have shrunk 30-40%. I was thrilled to learn that it's working!

    All the best to everyone, Trish

  • OBXK
    OBXK Member Posts: 689
    edited August 2013

    Scans tomorrow :o Sure hope I don't poop my pants!

  • gonegirl
    gonegirl Member Posts: 1,022
    edited August 2013

    Karen. Prayers coming your way

  • chanah
    chanah Member Posts: 90
    edited August 2013

    OBXK, I hope your tets went smoothly today.  My thoughts are with you during the wait.

  • OBXK
    OBXK Member Posts: 689
    edited August 2013

    Thanks!