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almost died in Florida

LOUSWIFT
Posts: 359
Joined: Aug 2006

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

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

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

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

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

dorookie's picture
dorookie
Posts: 1681
Joined: Jul 2007

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

plh4gail's picture
plh4gail
Posts: 1232
Joined: Oct 2010

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's picture
Lovekitties
Posts: 2893
Joined: Jan 2010

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's picture
lisa42
Posts: 3663
Joined: Jul 2008

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's picture
daBeachBum
Posts: 164
Joined: Apr 2011

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
Posts: 1832
Joined: Jan 2007

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's picture
mom_2_3
Posts: 937
Joined: Nov 2008

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's picture
pluckey
Posts: 470
Joined: Jul 2009

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's picture
PhillieG
Posts: 4659
Joined: May 2005

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's picture
ron50
Posts: 1266
Joined: Nov 2001

I hope they can do somethinng for you other than cause more grief,Ron.

relaxoutdoors08
Posts: 515
Joined: May 2011

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's picture
jjaj133
Posts: 857
Joined: Mar 2011

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's picture
2bhealed
Posts: 2084
Joined: Dec 2001

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's picture
Nana b
Posts: 2744
Joined: May 2009

Really hate hearing this news! So sorry!

Erinb
Posts: 295
Joined: Apr 2010

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's picture
Annabelle41415
Posts: 4202
Joined: Feb 2009

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's picture
Sonia32
Posts: 1064
Joined: Mar 2009

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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