life with out treatment

[McBeth]

how long can one go wiyh out treat ment and what are the symtoms of last days like.....
what about natural treatment and sucess

[Tallblonde]

G---

I couldn't have said it any better myself.  That is EXACTLY how I feel and it is EXACTLY my rationale for taking a "watchful waiting" approach.  Thank God you and I have that luxury.  I'm sure we'd both be signing up for the current combo treatment tomorrow if our livers were in bad shape or if we were experiencing symptoms that were intolerable.  

But that's not the case with us and it seems more risky than reasonable to treat now.  I asked both my GI's for their prediction (based on their experiences with hundreds of patients) on how much more damage my liver will show on the next biopsy three years from now.  Both said they doubted it would be much different than it currently is.  They both also agreed that I would not be significantly increasing my odds for treatment success by starting now, versus waiting three more years.

The decision to wait is almost a no-brainer.  Almost.

Susan

[honey1616]

Wow..Stage 1 is very good and sounds like you are really keeping on top of information for your husband! He is very fortunate that you love him so much! Then I read that you don't have money for the treatment...And I guess I never think about tons of people that don't have the insurance to pay for this and how on earth could anyone pay for this out of pocket???  It would definitely put you under. I know there is a lot of people doing trials etc for free and someone had just posted where they signed up some where for treatment and doesn't cost them a thing. However...I'm back to the stage 1 also and you have plenty of time to research and get all your ducks in a row. I wish you both the best.

[GwithHepC]

With all do respect, we fence sitters are not sitting on our buns and just waiting.  We are making very well thought out decisions about how we want to deal with a disease whose damage is often times measured in decades.  It seems to me a wise choice to take a very conservative approach towards a treatment that can cause problems potentially worse than the disease it is trying to cure - a disease, mind you, that almost everyone agrees progresses slowly.  Given the slow moving nature of this disease, and yes there are exceptions, and the tremendous amount of research on more effective cures, it is, in my opinion, very reasonable to choose a strategy whereby you help to slow, or even stop, the progression of scarring while you wait for less toxic treatments.   I have no problems with the term "alternative treatment," for it is just that - an alternative treatment, not an alternative "cure."  

I have no intentions of letting this disease get the better of me.  For me, treating this disease and suffering the side effects of the current tx for one - two years for a 30 to, AT BEST, 50 percent chance of getting rid of it is just not worth it.  This disease is simply not that immediate of a threat to want to kill it at the expense of my thyroid, my joints, my state of mind, my quality of life, my eyes, my skin, my hair, and the list goes on.  Not for the <I>SMALL</i> chance it has of progressing before newer treatments come out.  Not when there is strong evidence it can be held in check until better treatments come out.

Those of us who see many more cons than pros to treating given our current status are not fools and value our lives just as much as those who choose to treat.

And now, I am going to get off my ass and get on my NordicTrak - something I intend to be able to do for very many years to come.

G  



"Declare the past, diagnose the present, foretell the future; practice these acts. As to diseases, make a habit of two things

[BD146]

Thank you for your words of determination, encouragement, and hope.    I am also type 1b and also a non-responder.

But I am also determined.

Continued excellent health to you and your family.

EDGAR

P.S. The most exciting and memorable moment for me 6 months ago at my daughters wedding was walking her up the aisle.  And then of course the father,daughter dance.

[Tosser]

I'd like to add one more comment here about taking care of your liver and postponing treatment. I too am a survivor and whole hartedly agree with Indiana, MichaelT and Cuteus. I saw several liver specialists and did lots of research that led me to believe I could quit drinking and start the Milk Thistle along with high doses of Vitamin E and C, reduce my carb. intake, cut out all red meats, exercise, drink lots of water, get hours of extra rest each day and cut back to 16 hours of work each week, and give my liver and it's own defense mechanism a fighting chance to kill the virus itself. Well I did all of that for a little over a year and my viral load went from 7,000/ml to a whopping 3,500,000/ml and could feel myself getting more ill as time went along. I was pretty sick by the time I finally started Pegasys which made the tx hard to tollerate, but all through it I wished I hadn't put it off. Don't wait too long!

I think someone here posted some links to apply for financial assistance for treatment some time back. I think that would be worth looking into. I'll search around to see what I can find and post it back here. In the mean time, maybe someone else here will post that information.
Best of luck to you! ...stay in touch with us.

Tosser
PS. ChevyGal...I'm with you to the end of your tx and beyond, and as for me at 11 weeks post tx... life is WONDERFUL and I am feelin' GOOOOOOOOOD !!!

[berlynn]

Joni, You are one strong Lady! I can't believe everything that you have been through. Makes my stuff seem insignificant. I am glad I woke up at 2am...hahahaha and decided to check in....Your story and those of others are the encouragement I really need right now. Thank you for sharing, kim

[hepcbilly]

Hey you have been great for my family. I just wanted to say we dont believe "alternative" is the answer. We as I stated want to explore "keeping his liver in good condition" while postponing treatment. We really need some time to be able to afford the time to do treatment.We arent sitting on the fence, we know Tx is the only way to kill the virus. We also know if we do treatment now we will go bankrupt. Since billy is at stage 1 and the guy upstairs is looking down on us{as this truley is a miracle"}. What can we do to keep the liver in great shape, while we insure our finances for treatment.If we had no time , we would have to sell out and go for it. This would be even more stressful. We have a little play, so why not get the old liver in shape, get our finances in order and then go for it! This is only our way of thinking. I think it's reasonable, we arent thinking ok lets wait for something better or put of the inevitable, we are well aware of the inevitable. We dont want to wait until stage 4 or being alot older.But today we are stage 1 , we need more money to afford this treatment, and "the guy upstairs" affords us this time.

Mrs Billy

[Indiana]

Note the "odds" in my post. Sure ...this tx does not work for everyone. But it's still a WHOLE lot better than sittin on one's buns and doing nothing about it...or tryin to fool yourself with these "alternative" things. My post was primarily directed at the fence sitters.
I sure hope this new round of tx works for you. You are a real dedicated individual for doing this again. So this isn't the new Peg/ Gamma stuff I have seen in the trials? Are you adding this to some regular Peg/ Interferon and Riba or taking it straight mono tx?  How long is your time frame this time?
I wish you well.............

[Nann]

I had a great attitude, was entirely compliant with the dosing and injecting for two years and still did not achieve SVR.  It is not really an issue of getting up off your A$$.  As you know it is all so individual. I hit a wall this week when the large styrofoam box full of gamma interferon arrived and I knew I was in for 4 shots a week for a long time.   But I never did expect it to be even slightly easy. I am glad I am giving treatment a chance to work.

[Indiana]

I had to work late today so I know I'm commin in late on this one....But I am right there with MichaelT and Cuteus on their comments on alternative tx. It does not work to kill the virus. Some of those things can help, for awhile. But as your body gets used to whatever it is the benefits always fade and the Dragon comes back again. The BEST end result you can get from them is to simply put it off for awhile. Those things are not really an "alternative". I wish they could come up with a better name for them......like "Herbal Delay" or something. The whole name of alternative is misleading to me.
They cannot even be tested because there is nO consistancy in the actual amount of whatever herb is in it. There is no regulation of that industry at all. They claim all kinds of stuff and never have to prove it. They don't because they can't. The FDA had tried repeatedly to get any of them to submit for testing. They can't. There is only one now that has and it has been discussed here already. We'll see how that goes. I sure hope it pans out.
For those that cannot do tx or have failed....alternative is all you have. I sure hope it helps to extend your time.
For those who have not even tried tx....you are just peeing into the wind if you think that stuff is the answer to The Dragon. Your efforts will come back to bite you. The Dragon NEVER sleeps. He is a;ways there....eating your liver....24/7. Maybe not so much today...maybe more tomorrow. You wanta live with that thought? It's true. Given enough time he will kill you. The longer you delay the worse your odds of clearing. Most folks are left with whatever symptoms they had before they started tx even if they clear. To wait for symptoms is just playing Russian Roulette with your health.
This current tx DOES work for a whole LOT of us.
I WAS a type 1B. Supposedly the hardest to clear. 50% for types 1 & 4.....70-80% for 2 & 3's.  ODDS SHMODS! Get up off your a$$ and heal yourself! I won the war! You can too! Positive attitude and adhearence to the dosing schedule is all it takes. I have not been sick even a single day since ending my tx over a year ago! Life after tx is GREAT!
The choice is simple to me.....live your whole life in fear and surrounded by tests and concerns...or kill the dam thing and get on with life as you want to. Without fears of this.
These are just my personal opinions as a survivor. But I did tx and it worked for me. I WILL dance at my daughters wedding....and I may even have a drink. Take THAT Dragon!!!!!!

[reposyco]

TERESA IN ANSWER TO YOUR QUESTION WHO PAYS FOR DOCTOR AND OTHER MEDS.I LIVE IN SOUTH FLORIDA HAD JUST MOVED HERE AND TOOK A NEW JOB WHEN I FOUND OUT I HAD HEPC SO NO INSURANCE AT THE TIME I WENT TO HEALTH DEPT.FOR MY FOLLOW UP AND RECIEVED A REFERAL TO APPLY FOR A TAX GRANT CALLED W-088 FOR DOCTOR AND MEDS. AND GOT IT I PAY $5.00 COPAY FOR DOC.AND MEDS. AND SCHERLYN GIVES ME MY PEG.AND REB. FOR FREE I PAYED $10.00 FOR BIOPSY AND ULTRA SOUND,AND CHEST CT SCAN ENHANCED SO YOU SHOULD TALK WITH SOCIAL WORKERS AT HEPC CLINIC AT THE HEALTH DEPARTMENT THEY NO HOW TO GET IT PAYED FOR....DELORES

[GwithHepC]

Thank you for your input - I will look at the Roche study.

You certainly sound like you've been through a lot.  I pray you achieve SVR.

G

[ral]

Hi jonihs

Man joni you are another tough cookie

GOD BLESS
Bob L

[jonihs]

When I was okayed for tx. I had been through a month of in patient alcohol tx. and had been home for 8 mo.s maintaining w/ only watching my diet, and taking spirolinacto(sp) Lasix, Potassium, and vit B-complex. My Bellirubin and ammonia and everything else except my ensymes were n the normal range. They were in the 100's. So my Dr.called my condition "barely compensated" cirrhosis. I believe The study released by Roche on July 26 last year said they were also tx. decomp. so I would look into it.  I just got the yellow pages and started calling G.I. w/in 400 miles. Almost  everytime I told the receptionist w/ I wanted, they would put me through to the nurse. When I found one that said yes, he made me get a lot of tests and see a shrink before he okayed me. I finally got okayed and starte in Nov. But one of the reasons I was okayed was because I had been sober over a year and living a healthy lifestyle. Also I had to accept if I hadn't been a 2b he probably would not have tx. and he bluntly told me there was a chance the tx. would kill me. I have no regrets!    Joni

[britpeter]

Oh and yes, the potential detrimental/harmful effects of those growth promoting residues used for Skunk on 1. The hep C virus genotype 1a/b.? 2. The possible pharmacological interaction with the Interferon which of course can be used to shrink tumours i.e. Growth versus Shrink and 3. Smoke with or without tobacco or take in food, teas, coffee etcetera? And apology on previous I meant Native American.....not native Indian cos I guess you don't reside in Goa, Himachal Pradesh, Manali, Puri, Kerala, Delhi, Bombay or Calcutta....! Have a Fine Weekend, Be Blessed of whatever you call God.

[britpeter]

Well, Hi there. You clearly promote the idea of smoking dope as a help against symtoms and all associated with end stage Liver disease. I have heard that it may help in relieving/reducing the perceptible sx while on combination. What do you smoke and how much daily? Y'see, the problem here in UK is that a lot of the cannabis is severely adulterated...it's called soap bar and is probably no more than 10% THC. Whereas, the marijuana here called "Skunk" is so strong it probably contains double or even treble the THC found in the strongest NATURALLY occurring pot....hash or grass. Occasionally, it is possible to hear of pollen based clean Moroccan which......is.....NICE!
The days of Afghani, Pakistani, Nepalese, Lebanese and even one time Turkish (before Trickydicky Nxn made an agreement with Turkey to destroy their entire crop!) as well as nice clean imported weeds from Africa & S. America...Are OVER!! Unless you visit Amsterdam of course. So, what do you recommend? I first smoked in 1966! when believe me the **** was fantastic.
What worries me is with skunk, one smokes residues of all tha fast growth forcing chemicals cos they produce crops in 12 weeks!!!!! You wouldn't happen 2 be a native Indian by any chance cos I met one at Hendrix Isle of Wight 1970 and I've never forgotten him nor the absolutely wonderful weed he brought over.......or the STP! What would dear Dr. Leary say, I wonder? Look forward to your reply, BE WELL, don't let it get you down it's only castles burning, find someone who's turning...Dragonfly by Jefferson Starship too, Santana "I hope you're feeling better" I worked 4 them/him in France 1980 on part of the Marathon tour....the Marathon goes on and be glad for the song has no ending!!!!!!!!!!!!!!

[GwithHepC]

Jonihs:

Was it difficult to find a doctor to treat you with cirrhosis?  The reason I ask is I have a family friend who is a 63-year-old male with decompensated cirrhosis.  He has had an episode of bleeding from esophageal varices and has ascites.  I was only diagnosed last year - when I started doing research and found out about tx, I asked him if he considered treatment.  He had no idea what I was talking about.  I told him about tx and asked him to ask his doctor.  He did, but found what his doctor told him difficult to understand. I asked if he would mind if I spoke to his doctor and then I would explain to him.  His doctor told me he didn't tell me friend about the tx because he has decompensated cirrhosis and it is too dangerous to treat. I strongly feel he should have at least been given the option to tx.  I told my friend to get a second opinion, but he is scared to find a new doctor. It just really pisses me off that he was not told at all - everyone deserves to know ALL their options and make the best decision for themselves.

My friend is also planning to retire in 2 years and doesn't want to jeopardize his retirement by beginning tx and maybe having to lose time from work.  My feeling was that if he didn't do something about his cirrhosis he may not have a retirement.  I think I was beginning to scare him more than help him, so I dropped the whole tx issue and how important it might be for him to consider.  I don't think he realizes just how serious his condition can be at his stage.  I wonder if I should revisit the subject with him after he retires; hopefully he will still have the opportunity to choose tx or not.  I know at his age, and with decompensated cirrhosis, tx will be extremely difficult.  But like you and new-sojourn, it can also save your life when you have such advanced disease. Did you meet much resistance to tx and was it hard to find someone to treat you?  Your insights would be appreciated.  Again, I just think it is terrible he wasn't told and given the option. Thanks...

G

[cuteus]

I got the info you just asked for. You may click on  the contact patients button and if what you are looking for is not there, I am. You may contact me.

[jonihs]

If you look on  janis7hepc.com they have direct numbers for aid programs from both Scherring and Roche. They help all they can and even help for people who can't afford co-pays. They even contacted my insurance and found out what my co-pays were going to be before I started tx. Many drug companies have these aid programs, some of them need Dr. help and most take persistence, but I got most of my mothers meds(she's on Medicaire) free or for 5.00 to 10.00 a month. Alot of them take looking. Others your doctor has papers right in their office to get things started.  Joni

[jonihs]

I like new-sojourn, suffered liver failure. It was in July/02.. I also was told at that time I couldn't be tx. because of cirrhosis. I can't tell you how painful and ugly end-stage liver disease because they had me on IV morphine every 2 hrs. to control the pain, but I can tell you It's slow and painfulbecause other organs have to shut down also b4 you die. Kidneys after or at the same time as liver.You turn yellow and swell up like the Michelan man.Then theres the ammonia that builds up on your brain and I guess that's kind of a blessing because you can't complete a sentence or remember anything longer than a few seconds. That's When I got vicious w/ everyone,family and staff. The medicine they put you on for the ammonia makes you have "loose bowel movements" 5 or 6 times a day. I had to have my belly tapped twice to get rid of the ascites. I had to take 2 water pills plus potassium, Heck I can't even remember all the meds. Even after my bellirubin and ammonia were in normal range, there were others I had to take. I found out 6/03 that there was tx. available  now for patients with livers as bad as mine. I'm on week 16 of 24 and no, it hasn't been easy. I was on the verge of liver failure again 6 weeks ago, but I did research, mostly from links I found on this board, and decided the quality of life I had then(fatigued,nauseous,swollen belly)was not QOL. So I decided that even if I didn't get SVR, or feel better or extend my life, there was a chance and I was Taking It. It' already better and my belly is almost flat again from the inflamation gone from my liver and not retaining fluids. My answer, maybe not yours. It wasn't an easy choice, but I'm glad I made it.  Joni

[Tosser]

Hi All !

There's not a thing I can add to this thread to help more than you all already have. It's a wonderful discussion but I'm certainly not qualified to comment.

I'm a little out of place here anyway because I feel like I barely qualified to be included as a Hep-C patient anyway having been a genotype 3a and only sentenced to 6 months of tx, but I just had to say a little about how well you are all getting along today. I'm so very glad to see this. It's almost like old times again...you know...like when everybody was just here to try to help each other, and maybe even have a little good clean fun doing it. :) Thanks to all here who have given so much!

Tosser  ;o)

11 weeks post Pegasys/Copegus...still SVR !!!

[GwithHepC]

Hi:

Are you referring to the first link or the second?  The reason I ask is the first link is to a site that sells Sho-saiko-to in addition to Maximum Milk Thistle and some other products, so I would keep that in mind when reading the advice on that site.  (Not to say you shouldn't take Milk Thistle, just keep in mind the source when reading the information.)

G

[MichaelT]

Hepatitis Weekly, Jan 13, 2003 p8

    Sho-saiko-to extract reduces hepatic inflammation, fibrosis in nonsevere cases.

Full Text: COPYRIGHT 2003 NewsRX

2003 JAN 13 - (NewsRx.com & NewsRx.net) -- Sho-saiko-to extract, a Chinese herbal medicine commonly used for treatment of chronic hepatitis in Japan, effectively reduces liver inflammation and fibrosis up to a point. It does not benefit severe cases, pharmacologists report.

M. Kusunose and colleagues induced various stages of liver injury in model rats and administered Sho-saiko-to extract to try to determine the conditions under which Sho-saiko-to extract improves hepatic inflammation and fibrosis.

"The liver injury model rats were produced by administration of various doses of dimethylnitrosamine (DMN) and Sho-saiko-to extract was administered to these rats. Then the liver inflammation and fibrosis-improving effects of Sho-saiko-to extract were evaluated according to L-asparate aminotransferase (AST), L-alanine aminotransferase (ALT), liver retinoid levels, levels of hydroxyproline, transforming growth factor-beta (TGF-beta), and the liver fibrosis area. These indicators depended on the total doses of DMN," the researchers said.

They reported that "[t]he ability of Sho-saiko-to extract to improve liver inflammation and fibrosis was limited to the following levels of the respective parameters: AST levels (234-264 U/l), ALT levels (208-232 U/l), TGF-beta levels (1102-1265 pg/g liver tissue), hydroxyproline levels (633-719 nmol/g liver tissue), and liver fibrosis area (9.7-10.6 times for normal rat)."

Kusunose and colleagues wrote that their "findings suggested that Sho-saiko-to extract is effective in the treatment of liver inflammation and fibrosis up to a certain degree of severity, but it produces no improvement in more severe cases."

Kusunose and coauthors published their study in the Biological & Pharmaceutical Bulletin (Effect of Sho-saiko-to extract on hepatic inflammation and fibrosis in dimethylnitrosamine induced liver injury rats. Biol Pharm Bull, 2002;25(11):1417-1421).

The contact person for this report is M. Kusunose, Kochi Medical School Hospital, Department Pharmacy, Nanko Ku, Oko Cho, Kochi 7838505, Japan.

To subscribe to the journal Biological & Pharmaceutical Bulletin, contact the publisher: Pharmaceutical Society Japan, 2-12-15-201 Shibuya, Shibuya-Ku, Tokyo, 150, Japan.

The information in this article comes under the major subject areas of Complementary and Alternative Medicine, Gastroenterology, Hepatology, Chinese Herbal Medicine.

This article was prepared by Hepatitis Weekly editors from staff and other reports.

    Article A96286017

[hepcbilly]

I read all the information on the site gwithhepc posted the links too. That company DOES say use milkthistle.