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Last Post so Take Care

LOUSWIFT
Posts: 372
Joined: Aug 2006

It's been quite a while since I posted here. For those of you who don't know me I had rectal cancer stage 3c. 1n 2006 usual treatment radiation/chemo/surgery/chemo then NED until summer 2010 about four and half years later. Colon cancer stage 3c again but this time in the ascending colon by transverse with three localized nodes involved. Laroscopic surgey and Folfox with full 12 treatments. I have been NED since March 2011 but unfortunately and the reason I am writing this is it appears (no doctor will admit this) my Folfox treatments damaged my liver. The end result-cirrhosis. The damage started around treatment seven when I started developing ascites (fluid) in my abdomen. This was completely ignored by my oncologist. So on went the treatments and on went the damage. I happened to take a trip in April to see the birth of another grand daughter and as assured by my oncologist that the ascites would just go away. Four weeks later my abdomen had swollen to over 50 inches while in Florida and I ended up in intensive care for ten days and another month in hospital(s). My kidneys almost completely shut down; my blood pressure dropped dramatically and was unstable; I went from 214 lbs to 149 lbs.; lost control of my bowels so bad I had to have a tube inserted in my rectum (I don't reccomend it for those with low pain tolerance) along with a foley tube; lost almost all muscle and fat; lost the ability to sit up and forget about walking; they told my oldest daughter to fly down because Dad was supposed to die in the hospital; well the fun goes on but time contraints...anyway eight doctors, three hospitals, dozens of tests and re-tests (I think for increased billing purposes) and the verdict was delivered six doctors voted that I had liver cancer and two felt cirrhosis. I opted to have a liver biopsy (transferred from hospital to hospital by ambulance (their motto "if you haven't hurt the patient take them out and do it again"). Anyway I digress such fond memories. The fact came back advanced liver cirrhosis not caused by alcohol; hep-c or fatty liver diease but by the likilhood of chemo doing the damage. The good news is cancer will not be what kills me...cirrhosis will. I'm still NED as far as I know CEA less than 1. They predict my death somewhere betwen 2-10 years usually less than five. I coming up on year two but so far so good. After six months of physical therapy I can walk again and even have some muscle back on my arms. But still bathroom issues that keep me home mostly unless a bathroom is near. I'm sort of a chemo inducted prisoner of my bowels. I have less freedom to travel than most State Prisoners( I am on diuretics and need to have the ascites drained about every six months (cat in abdomen and about three liters of fluid removed) It's less painful than letting the fluid build up. My oncologist who is a top man in his field when I returned home to see him said not even an oops I missed it or sorry. Rather he decided I could be a great case to do a study on the effects of the chemo since it is so rare. Isn't that great he can get a paper published due to his treatment and what I would argue a bad outcome-death for me. Anyway my point about my this long sad tale is trust your instincts and not your doctors. I was so sick after treatment seven when the ascites began that I should have quit chemo. But I was scared of cancer still being there or coming back and listened and trusted my oncologist. In truth the cancer may have been gone after surgery and chemo would not have been necessary and my death ensured. I often discounted the bark brewers; the juicers; the rap a magnet around your wrist types (no offense intended) as a function of desperation and misplaced trust. I can't say they are right or wrong now but after what seems like many years of sleeping on toilets; extreme pain in my hands, feet and well you know what chemo brings. The emotional toll on me (I'm not the same guy I was) and those who love me, I ponder could it have been worst to gargle some tree bark? So in closing and my last post please challenge doctors and standard treatments and never ever be so stupid (like me) to trust a doctor; a test; or a certain outcome (scare tacit). Whatever path you choose to fight the beast best of luck and kick it's ***. Hugs Lou

Lovekitties's picture
Lovekitties
Posts: 3323
Joined: Jan 2010

How come Lou? I know you have had a rougher road than most with your treatments and resulting issues, but am glad to hear that you are at least recovering somewhat.

Even if you don't post often, hope you will still be hanging out here with us and let us know how you are doing. And remember, no one here on earth knows when our number is up, so live like you have lots more than the outside 10 you were told.

Hugs,

Marie who loves kitties

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Lou,
I am sending you a big hug. I am so sorry it has been so darn hard on you and I know that is an understatement.
Prayers to you.

Aloha,
Kathleen

wolfen's picture
wolfen
Posts: 1318
Joined: Apr 2009

Where is that idiot doctor so we can hang him by a portion of his lower body. The way he treated you is beyond disgusting and then he wants to make you a case study. I got so angry reading your post and all the he// you've been through. I and other family members have had bad experiences with doctors, but this guy takes the cake. I'm glad that you are somewhat recovered, but don't give up hope. There may be something that can be done. Please remain part of the group. We will be thinking of you.

Luv,

Wolfen

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

Based on my experience, the #1 "alternative" doctor for liver problems that I would investigate is Burton Berkson, PhD-MD, a former NIH principal investigator and college professor, now working in New Mexico.

Berkson uses things like lipoic acid, silymarin, N-acetylcysteine, vitamin K2 (as MK4), selenium,(phosphatidyl) choline (e.g. lecithin) and coQ10 to restore liver function in people with severe and terminal liver damage, even dying (like only 24-48 hr left).

I would consider this doctor as a likely ticket out of harms way, the real deal. There is a lot of his story and approach on the internet too, for free (I read a lot of his stuff published since ~1979, never met him, although my wife's doctor faxed him about one of his protocols).

I wish you happy holidays, and that we hear from you again with extra reasons to celebrate.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

lou,
its a sad and amazing story, and what i know of you is you have suffered and are as tough as nails.

it seems like a lifetime ago.

as a bark chewing juicer amongst other vices, all i can say is god bless.

i hope your health improves, maybe some of tanstaafl ideas is worth checking.

its clear doctors are human, even your onc has not developed enough heart to say sorry.

its been wonderful sharing the journey with you and i hope the rest of your days are full of love and peace. and of course you have lots of them.

and yes you beat the crc.

hugs,
pete

taraHK
Posts: 1961
Joined: Aug 2003

Lou -- Thank you for sharing this story with us. It could have been any of us. Please don't go anywhere. We love and need you. Sending loving thoughts, prayers and all best wishes your way.

Love,
Tara

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

Sorry lou i will take your advice about drs i know my body better than anyone else and will stand up for myself when it comes to all drs. take care

michelle

buckeye2
Posts: 428
Joined: Jul 2011

Thanks for sharing to help the rest of us. I wish you good days ahead. It sounds like you have had your share of bad ones. Lisa

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

There is so much information in this post....it truly is helpful. I have to selfishly hope that you will peek in at the board from time to time and give some insight/input. However, if you want to think about cancer as little as possible, I completely understand.
There are times I feel like taking dozen of plates out to some rocks and smashing them one by one...anger.........directed at cancer...sometimes needs a voice---and a good smash!
If I do, a will smash some for you.
Your Friend in California~

Annabelle41415's picture
Annabelle41415
Posts: 6154
Joined: Feb 2009

I've been thinking of you and wondering how you were doing. Sorry you have been down such a terrible journey but glad to hear that you are slowly progressing. Not sure why this would be your last post, but hope you do continue to pop in once and awhile and let us know how you are doing. You are right, we need to be vigilant about how we feel. You will always be in my thoughts. I'm hoping that the doctor's are wrong and you will continue to improve.

Kim

lauragb
Posts: 370
Joined: Aug 2011

I am sorry you have suffered so. I do appreciate you sharing this information with us. I will be having decisions to make, I will keep in mind your prospective.
Sending light,
Laura

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Lou,

I'm so sorry to hear that all this has happened to you. I'll be praying for you.

*hugs*
Gail

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

Shocker for sure.
So much for trusting your "doctor" Plz come back Lou, alot more to this we need to be informed of.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Lou,

I'm sorry to read all the info in your post. I know you've had a hard time of it and it is very unfortunate and sad. As others have said, no one knows how long we have left for sure. Why not look into herbal/natural remedies to help reverse the cirrhosis damage to your liver? You have nothing to lose by trying now. I have a friend who got cirrhosis to her liver from her alcoholism. She supposedly should have died from it at least six months ago. She has been taking milk thistle (and I don't know what else, but there's a few other things too) and her liver is actually getting better, which her doctors are amazed by.

I looked up reversing cirrhosis liver damage naturally on the internet & read three specific natural remedies that supposedly help reverse the damage.
They are: 1)Milk thistle- to treat liver damage and help detoxify
2)Globe artichoke- reconditions the liver and improves the flow of bile to fight
toxins
3)Gotu-Kola- detoxifies and stimulates regeneration of the liver

Also, consider tanstaafl's advice above- it sounds possibly promising- just don't give up and consider only the regular western medical advice at this point, please.
I know you're not into the natural stuff but, hey- this is your life & what have you got to lose by trying?? I know I'd try anything I could & not just accept the sentence that has been handed to you. Warning- sometimes when you take things to detoxify the liver, you will temporarily feel worse at first as all the toxins come out of you, but it's a neccessary process to get the bad stuff out. That stage hopefully shouldn't last too long. Hey, if it could possibly help reverse some of the liver damage and even stimulate the liver to somewhat regenerate, wouldn't it be worth it? Please look into it.
Your oncologist may not be confident or even aware of what these herbs can possibly do for you but, hey- he hasn't been looking out for you all this time, so I wouldn't go by what he says about it. The decision is yours.

I am hoping this truly won't be your last post. Check in with us every now and then, please. I care.

Hugs,
Lisa

Nonna2005's picture
Nonna2005
Posts: 16
Joined: Dec 2011

Lou, I didnt know you or your story till now. I do wish you and your family all the best. It scares me that to know that Doctors like this are out there! I hope you change your mind about this being your last post. I would love to get to know you. You are in my prayers.

wishing you happier and healthier days ahead.

Liz xoxo

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