Liver Mets just diagnosed

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oaklandmama
oaklandmama Member Posts: 24
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

HI All-

I jut finished a year of treatment for the first dx- had bmx, chemo, rads and am now on tamoixifen. I had a gallbladder attack last week and the doc ordered an ulrasound which revealed large dark spots on my liver. My onc says she believes it is mets. I have had severe bone pain in my lower back and butt for weeks, but chalked it up to Arimidex which I quit, then Tamoxifen. I am scared shxxtless!!! I have a bone scan and ct scan monday am but have to wait all weekend. I need some hero stories. Are you stage iV and living you best life? How do you manage the pain of knowing you ave lmited amount of time left on earth?

Please help.

Alexandra 

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  • Naniam
    Naniam Member Posts: 1,766
    edited December 2011

    I can't offer long term help, I've known I had mets for a month.  Just wanted to say hi.  I understand your feelings.  Lots of women here to offer you hope. 

    Hugs   Brenda 

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited December 2011

    Alexandra,

    Come join us on the Stage IV boards where more people will see your post. My mets were found 18 months ago, not in the liver, and I have been NED [no evidence of disease] for 8 months now using just hormonals. However lots of the women on the Stage IV board have liver mets and can tell you their positive stories.

    So damn sorry that you have joined our club. Really,

    *susan* 

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  • hydeskate
    hydeskate Member Posts: 297
    edited December 2011

    I was dx in 2008 with Stage IV liver and lungs Mets.  I have been NED and off chemo for 2+ years (and I am triple negative meaning the only treatment is chemo).  I still have pain from the treatment/surgeries & auto immune disorder which we are manging with pain medicines. I don't dread on what can't be changed, I do live my life more care free than I did before the dx.  I am in control not the cancer, I still work full-time putting over 100 hours of overtime while working with 18 to 24 years college athletes and having fun when every possible.  My sister and I are actually about to go down to Orlando to legoland, harry potter world and NASA.

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  • miffyjones
    miffyjones Member Posts: 33
    edited December 2011

    Hi Hydeskate - I've just been diagnosed with mets to lungs and liver, triple negative also, after a double MX, chemo, rads last year. My doctors have said I have months to live but you seem to have done so well with your chemo treatment. My docs are saying there is nothing really they can give me - could you advise what type of chemo treatment they have been giving you for stage 4 as I really want to challenge my oncologist on this - I have two babies and I want to give everything a go so I can see them grow up. Love and light. xxoo

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited December 2011

    miffy,

    I don't believe your doctors. And, if you can, it would be a good plan to head to a major medical center to see what they think. Where are you lcoated? Will your insurance pay for another opinion?

    Write back.

    *susan* 

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  • hydeskate
    hydeskate Member Posts: 297
    edited December 2011

    I am at UNC where Dr. Carey an expert on Triple Negative works, she is not my primary ONC but she has input.  I had Abraxane followed by AC, BMX, Radiation and Abraxane again (few of those treatments was with the max doseabe allowable, since I had no SE). I was 29 when I was dx with Stage IV, I was told there was no protocol becasue someone my age isn't suppose to have it so they were going to make it up as they went along, and it seems to be working. 

    Like Susan said I would go to a major medical center that has doctors with TNBC experience.And triple negative normal responds good with chemo.  Check out the Triple Negative Forum on here as well as the Triple Negative Foundation website forum.

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  • oaklandmama
    oaklandmama Member Posts: 24
    edited December 2011

    Thanks ladies for reaching out. I am so shocked still. Can't seem to get my head around it.

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  • miffyjones
    miffyjones Member Posts: 33
    edited December 2011

    susan and hydeskate thanks for your support - i'm down here in little old new zealand and the only drug that they discussed giving me was capecitapine as the FEC and Taxol has not worked out first go round when I was diagnosed with mid stage triple neg. I don't get it - i feel really good, I'm off to find myself another oncologist tomorrow in NZ and have my sister in law who is a Dr in the states looking into The Mayo Clinic to see what they have to offer - so I may have to spend my lifes savings to get up to the USA to get some proper treatment??? What other Major Clinics do you know about that specialises in TN or are well recognised for BC in the states - I have a lot of family up there and am more that willing to come up and see what can be done. ANy names / contacts etc would be much appreciated. Also hydeskate, what is AC and BMX. I think maybe they gave me the wrong combination of chemo?? Oakland mama - don't stop searching and maybe like me, don't take your first oncologists recommendation. Love to you all. Night night from NZ. Thanks for your help xxoo

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  • redwolf8812
    redwolf8812 Member Posts: 2,463
    edited December 2011

    Oaklandmama - I pray those spots are benign, which is a strong possibility. And if not, it's not a death sentence. There are many chemos and concoctions they can try. There are stage IV girls on this board who have been so for years. You may want to post over there - they will definitely give you comfort and joy.



    Miffyjones - if you're looking into the states, can I recommend the University of Pennsylvania in Philadelphia? The oncology team there is constantly researching and running clinical trials, and triple negative is one of their big focuses. It's great that you have family here that can check things out for you. If there's anything I can do, get phone numbers, names, pamphlets, etc, please send me a private message.



    None of us are promised tomorrow. We are all here by the Grace of God but to have a doctor tell you "months" when you feel so good is odd (I'm being polite). I hope you find a more encouraging doctor soon.



    Prayers for all.

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  • hydeskate
    hydeskate Member Posts: 297
    edited December 2011

    Miffyjones

    BMX is a bilateral mastecomy

    AC is a chemo called Adriamycin- aka The Red Devil

    I am at UNC-Lineberger Comprehensive Cancer Center in North Carolina, this is where Dr. Lisa Carey one of the Triple Negative Specialist. 

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  • BlairK
    BlairK Member Posts: 399
    edited December 2011

    Dear oaklandmama - I am wishing you good health and praying for your recovery.  My wife had a BMX on 10/14 and has 3.5 mm HER2 positive and ER positive.  She is preparing for chemo and herceptin on 12/20.  Last week she had pre-chemo scans and the CT scan of the liver shows spots but very small spots.  They are doing an MRI of the liver on Monday and the oncologists are highly optimistic that the MRI scan will show that my wife's liver is OK.  It is inconceivable that a small IDC tumor of only 3.5 mm could spread so fast after surgery.  I hope my wife's oncologist is right.  I will keep reading your thread and you are welcome to read my thread under the HER2 positive section of the bulletin board under my name BlairK.  I wish you and your family a happy holiday season.  BlairK

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  • alesta29
    alesta29 Member Posts: 1,505
    edited December 2011

    Alexandra

    Hi

    I was diagnosed with liver, lung and spinal mets from the get go in June this year after a routine mammogram. Have just finished my first chemos (FEC / TAX x3 each) and now onto Tamoxifen. My first scan showed progression in my liver after the FEC and I have another scan in January to check things out. 

    It's bloody scary at the start. Just feel like I'm getting my head around it now. Come on over to the stage IV boards where there are lots of women doing well with liver mets and lots of kick ass stories.

    Laurie x 

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  • miffyjones
    miffyjones Member Posts: 33
    edited December 2011

    it makes me so proud to be a woman to see us all banding together on this website. It's really just hit home to me that there are great people out there that care for other human beings - ones you don't even know - thank you from the bottom of my heart. I think this was one of God's lessons for me today.

    Hydeskate - I'm going to give your Dr Lisa a call to see if she can suggest a better course of action. Thanks for the contact.

     Redwolf, could you please private message me some names and numbers as mentioned above as I'm going to talk to the team in Philadelphia as well.

     Many thanks again. God Bless your day with lots of love and laughter. xxoo

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  • MsBliss
    MsBliss Member Posts: 536
    edited December 2011

    Dear Miffy,

    First, go to the tnbc website and connect with Steve.  He has contacts at MD Anderson.  They have excellent protocols for tnbc.  Or you can just contact MD Anderson directly.  They will arrange a consult, work with your insurance, even refer you to low cost or free accomodations for your stay.  If coming to the states is just too onerous on you, then you can have your local oncologist coordinate a protocol with them directly.  They can advise your doctor.  

    http://www.mdanderson.org/ 

    http://www.tnbcfoundation.org/index.html 

    Next, go to nosurrendertobreastcancer.com.  Read the Edge CAM.  He is absolutely brilliant and his recommendations work with chemotherapy.  He is brilliant and my oncologist, (I have two oncs in my family also) supports his recommendations. 

    http://nosurrenderbreastcancerhelp.org/page93/page92/page92.html 

    All my best, 

    Bliss

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  • reesie
    reesie Member Posts: 2,078
    edited December 2011

    Hope they find the spots on your liver are just a fatty liver. That's a common SE from treatment. If not and you find you're one of us now join us over on the Stage IV board. You'll find so much good information there.



    There are many of us who have lived a long time with mets. There's a lot of hope and treatment options out there for you.

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  • miffyjones
    miffyjones Member Posts: 33
    edited December 2011

    Girls - thanks for your help. I'm fighting this beast but could'nt do it without your help. It's such a swamp of information - just where do you start. Thanks for some direction. Just got a letter from my onc's nurse re starting me on Xeloda - anyone know anything about this for TNBC Stage4? From what I've read its the absolute basic thing you can do??? Will keep searching. God Bless.

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  • miffyjones
    miffyjones Member Posts: 33
    edited December 2011

    Hi Susan - down here in little old New Zealand - seriously looking at going to the USA or UK - Onc says he wants to put me on Xeloda, but on reading everyone's blogs, there is so much more we can do .... so I'm in search mode right now. Meet my Onc this week for a full on discussion around this as he is only back from the Texas SYmposium. Will keep you posted or message me. Thanks for your support.

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