almost died in Florida

LOUSWIFT
LOUSWIFT Member Posts: 371 Member
in Colorectal Cancer #1
Well I'm back from Florida, I have a new beautiful grand daughter. But there was a major problem. After about 3-4 weeks my abdomen filled with fluid so badly that I couldn't stand the pain. My wife and I had driven down to Florida after onc thought the fluid was the effect of Folfox and would be absorbed. Instead it got worst. I went to ER and they admitted me to the hospital. I was in the hospital for 24 days with four paracentesis. Florida doctors discovered that I have cirrhosis of the liver. I do not drink and my liver never was a problem before. It is possible that the Folfox caused my liver to suffer damage. I started getting fluid retention about treament #7 but it got worst after #12. My cancer is gone but with cirrhosis my life span may now be between 2-10 years. More likely 2-5 years. I thought I had beaten cancer again but now there is nothing they can do about my liver. Now diuretics keep me from bloating in the abdomen. I am so weak from my stay in the hospital I can barely stand and walk. I lost about 30 pounds and have little or no muscle left. I can't believe I struggled through cancer treatment and now my liver failure will evenually kill me. Lou

Comments

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #2
    oh my god i am sorry lou
    dear lou,

    this is the saddest news. we went through folfox together.

    like someone said crc its the disease that keeps on taking and taking...

    i am aware of the livers regenerative powers and also the issues with the scar
    formation. did they say diet, milk thistle and samee of no help at all ?

    the liver damage from chemo to me was well just these numbers ast,ggt, alt that keep going
    up. now those numbers have a story behind them. this just makes me feel sick.

    just mentioning that sandra cabot wrote the bowel and liver book, its like my bible. i am sure their was some things to try to help the liver.

    hugs and love,
    pete
  • dorookie
    dorookie Member Posts: 1,731 Member
    #3
    OMG I am so sorry
    I so hate to hear this, how could it have happened? Does your ONC have any idea? I believe the liver does regenerate itself right? I will keep you in my prayers. I know what its like to have fought so hard during treatment, just to be kicked in the teeth again by other things..

    Stay strong
    HUGS
    Beth
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #4
    Chemo's Long Term Effects
    Hi Lou

    I think that we all know the risks associated with doing chemo. We might nor readily acknowledge that it will happen to us, but we're cognizant of the fact. Our bodies are "soaked and bathed" in chemo during treatment.

    It is afterall, a systemic treatment, so everything from our nails, to our hair follicles, to our internal organs, take a pounding with these infusions. Obviously, they are cumulative in nature, so the damage can begin to show up even years after we stopped treatment.

    That's the whole maddening aspect of our disease. We are put in a position to trade tomorrow for today and then we worry about the consequences at a later date. We hope that whatever happens to us is somewhat manageable and can be lived with, but it's always hard for any of us or our medical teams to precict long term effects from cancer treatments.

    Your thoughts on "I beat cancer only to have to contend with liver failure" is the type of fear that all of us do share in our fights. Given the choice to not do treatments and face mortality at an earlier date than was expected - or do treatments and get as much as we can while we can.

    This is a constant theme in our struggles and is one of the cruelest ironies that we can face. I don't have the easy answer to any of it.

    I am wondering if you could be placed on a liver transplant list? Since you currently do not have cancer, you just might be eligible for the program.

    Milk Thistle is something you could take that can help to cleanse your liver and could be of some benefit as well.

    Congratulations on the birth of your granddaughter; I'm glad you were there for that. I'm sorry about all of that time in the hospital, that is a very long stay and does not sound very pleasant but glad you were in good hands.

    I dunno know, Lou. What we all have to contend with is enough to upset us as well as all of the uncertainty that we all live with as well.

    I'd at least ask about the liver transplant list, you never know.

    -Craig
  • plh4gail
    plh4gail Member Posts: 1,238 Member
    #5
    Hi Lou...the others have
    Hi Lou...the others have said it. I am so sorry this happened to you! I will be hoping and praying for something good to happen to you.

    Gail
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #6
    Dear Lou
    So sorry to hear that the bloating turned out to be liver problem.

    I am glad you were able to be in Florida for the birth of your granddaughter, especially since it also provided you with an at least temp solution to that fluid retention.

    I can understand your thoughts about what you went through only to have this happen as a result. Is it at all possible that a family member could donate a portion of their liver for you? It at least can regenerate for the donor and for you. I realize that you may not be ideal candidate in the norm of organ donation, but it may be possible.

    Rest up, and do some easy exercise to help get that muscle back.

    Hugs,

    Marie
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #7
    Lou
    Hi Lou,

    First of all, congrats on the new granddaughter. :)
    Man, I am so sorry for what you have been going through. I bet it was the oxaliplatin that did the damage to your liver. That is why now I am so aware that throughout chemo (even if our oncs don't say so, as most don't), we need to protect our liver by detoxing it (in between chemo sessions if you don't go off chemo). That is what I have been doing & I pray it helps cleanse it. My naturopath told me when I started this all & I asked if the detox cleanses would undo what the chemo is trying to do on the cancer. He replied that it will actually help the chemo work better because it will allow my liver to take more chemo, as it is cleaning out all the "muck" already in my liver. A liver can only take so much, as it is our body's filter. When it has to filter a poison (like chemo), it has to work very hard. When other things are put through it too- all we eat, drink, and the medications we take- it can get to be too much for the liver to handle.

    Just a thought- ask about taking milk thistle (which even my onc told me wouldn't hurt my chemo). It's not a major detoxer, but will work on getting the crud out of the liver little by little.
    First, you need to build up your strength and muscle again. I would definitely look into and find something to take for that. Health food stores have powder drink mixes that have protein whey in them, which will help build your muscles back up again (it's what athletes and weight lifters take to build muscle).

    I'm glad you made it back home- get rest and don't just lie there- exercise when you're able to because lack of exercise will make even more muscles atrophy. Find something to take to build the muscles up and to detox the liver. If the doctors told you there's nothing they can do for your liver, then they're not the ones to ask! I would say at this point since you already have been given the cirrhosis diagnosis, there would be nothing to lose in trying to cleanse the liver and possibly everything to gain.

    Best wishes- take care of yourself!!

    Lisa
  • daBeachBum
    daBeachBum Member Posts: 164
    #8
    Sorry Lou
    I am sorry to hear the news.

    When you posted before, your symptoms seemed a lot like mine when I had ascites. That sucks its due to liver damage and not just "leftover" ascites fluid.

    Before I was properly diagnosed with CRC, The docs thought I might have had cirrhosis. I did a lot of research that week. While cirrhosis is very serious, it seems like they have made great strides recently. Both my sister and brother volunteered for a "live transplant", which might be worth reading up on if you have kids or siblings who are in good health and agreeable with the procedure and small chances of complications.

    I send good thoughts your way and hope you gain strength and weight back quickly!

    Ray
  • John23
    John23 Member Posts: 2,122 Member
    #9
    Lou -

    Rather than use up a ton of pixels with something that you may
    not even care to read, I'll just provide a link.

    Click and follow it as far as you'd like, Lou. There is never
    reason to lose hope.

    Cirrhosis

    My best to you,

    John
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    #10
    Lou
    Lou,

    So sorry to hear that you had such a rough time and got bad news during what should only be a joyous time. A neighbor of ours has Hepatitis C and has been able to manage subsequent liver issues through exercise and diet. I know that it's not the same situation as you are in but I think advice from others on how to best assist your liver is valuable.

    All the best,
    Amy
  • pluckey
    pluckey Member Posts: 484 Member
    #11
    Oh Lou, my heart just aches
    Oh Lou, my heart just aches for you.

    You beat cancer, you can regain some quality of life. YES YOU CAN.
    Jesus, there are alcaholics that live 40 years with a damn pickled liver....you can squeeze some more out of life too.

    I know you are tired and pissed off as he&&, but we are here for you Lou

    Peggy
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #12
    Lou
    I'm very sorry to hear this. I did a quick search and saw this article on WebMD.com about milk thistle.

    ~excerpt:
    "Substances in the milk thistle plant may help treat inflammation of the liver in cancer patients undergoing chemotherapy, a new study shows."
    -phil
  • ron50
    ron50 Member Posts: 1,723 Member
    #13
    Best wishes mate
    I hope they can do somethinng for you other than cause more grief,Ron.
  • relaxoutdoors08
    relaxoutdoors08 Member Posts: 521 Member
    #14
    I share your same concerns
    Lou
    Sorry for your pain and fear. My liver tests have been high since my 7th Folfox Treatment and they dropped the chemo to 80% on the 11th and 12th treatment due to the liver tests. My liver tests continued to be above normal but they did start to drop 1 month after finishing treatment and my onocologist at Mayo said they will continue to monitor.

    My prayers for you as you heal. Keep the faith and research what options you have.

    Congratulations on the birth of your grandchild. Please heal so you can enjoy being a grandparent.

    Prayers,
    NB
  • jjaj133
    jjaj133 Member Posts: 867 Member
    #15
    Congratulations on your new
    Congratulations on your new granddaughter. I am so sorry to hear about this new development. Please keep researching and questioning. My prayers are with you. I wish i could do more. : (
    Judy
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #16
    So sorry
    Lou,

    I am very saddened to read about your liver and the nasty effects of your treatments. You didn't ask for any input but you know me..... ;-) If you're open to it, A Cancer Battle Plan by Anne Frahm may provide you with some insight and hope to helping your liver last longer than the doctors are telling you.

    Congrats on your grandchild. Good thing there is new life on which to focus.

    I wish you the best.

    peace, emily
  • Nana b
    Nana b Member Posts: 3,030 Member
    #17
    2bhealed said:

    So sorry
    Lou,

    I am very saddened to read about your liver and the nasty effects of your treatments. You didn't ask for any input but you know me..... ;-) If you're open to it, A Cancer Battle Plan by Anne Frahm may provide you with some insight and hope to helping your liver last longer than the doctors are telling you.

    Congrats on your grandchild. Good thing there is new life on which to focus.

    I wish you the best.

    peace, emily

    Oh my goodness!
    Really hate hearing this news! So sorry!
  • Erinb
    Erinb Member Posts: 293
    #18
    Maybe it's a blessing you
    Maybe it's a blessing you were in Florida and now that you know what the problem is you can move forward. I really don't know what to say. You all go through so much. I hope one of these links/advice the others provided buy you time and give you hope.
    Erin
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #19
    Post
    I've started a post a couple days ago to you asking how you were. I'm sorry to hear the news about your liver. Did they not do blood tests on you or did it just not show up. I'm hoping that something can be done to help you move on. It's terrible that chemo has done this to you. I'm hoping that your doctor has a good plan for you.

    Hugs! Kim
  • Sonia32
    Sonia32 Member Posts: 1,071 Member
    #20
    Oh Lou
    I'm so sorry. Oh the pitfalls of this disease and the risks we endure when we do chemo.
    As Craig suggested milk thistle is very good, and maybe getting on a transplant list?

    Hugs

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