Posting for non treaters and waiting for new drugs.

[Upbeat]

There are a lot of us who feel the treatment is worse than the virus and a lot that are waiting on newer drugs that would give them better odds on the drugs working without all the SX. The posts on this board for the most part is pro TX. I have noticed on this board as well as others that the pro TX crowd have a hard time with people that don't agree with their decisions. Maybe its human nature to feel better about their decision if a lot of people are in the same boat with them.  I want to get some feedback before I post any thing for people that are not on TX and their reasons and such. I assure everyone I will not post anything If I will be getting static from the people on this board. Their are some that think TX is the only way and anyone discussing anything else might be making newbies hold off treatment.  Please advise as I don't want to cause any waves.

                                                  Ron

[GrandOak]

I'm not looking to antagonize you during what appears to be an apparent male PMS moment, but above you said, "when the promise of newer, better, less toxic drugs are in sight" and I was wondering to which drugs you are refering?

All of them that I've seen are being researched to be used in addition to the current tx meds.  So while the new med(s) might be better and less toxic, they still require administering the current toxic ones which would not seem to make tx any friendlier.

[Cindy10]

Well as you can see many people have many opinions. I have had HCV about 20 years and my husband about 30 years. We originally decided not to treat and waited two years. I recently got laid off and my doctor called me (a week later) after an ultrasound and said I was getting fat absorbtion in the liver and I should think about treating now. He said with my genotype 3A I had good odds. I asked how far away were any new treatments and he said at least 7 years away. And If I waited my odds could be reduced, plus I would then be seven years older and close to menopause. He also said many new treatments include the same drugs available now. So I thought about it and decided to start (thought this all happened for a reason). After I started treatment we got another call from the doctor to say my hubby had gone from stage 2 to cirhosis in just two years, what a shock. So needless to say he will be starting treatment soon.
And I am glad I did start now, before it progresses.  I have been on it for 5 weeks (awaiting my 4 weeks PCR) but the doctor said my liver counts are normal.

The treatment is not easy and waiting was, but sometimes the wait is not worth it. Best of luck to you whatever you choose to do!

[bobbyullc]

having finished tx and waiting 6 mo results i would say if i could at this point have put off tx for several years i would do so even now. it was a year wasted from my life and i still have fatigue after 5 months. i feel in 2-3 years the new drugs will be approved, there are to date very little sides, look like 95% svr rates and much shorter tx time. yes at first they will be a combo but if more successful and shorter time why not wait 1-2 years and see if they pan out? 1-2 years will not make any differance if not now stage 3 or 4. many of us would die of old age before feeling any ill effects from hcv and i would never tx if only 0 or 1 but watch my 5 year bx. That is my opinion and shoot me if you do not agree but i am sticking to it.
bobby

[rentapen]

Did ya read on that vet study that all they said about the 1960's and 70's is that there was a slight increase. The most important group if your in your 40's or 50's and they said "slight increase". God I love the smell of BS in the morning. All's good.
rent

[mari74]

I did not meet Katie the Trail Nurse yet. Sure I ask for Demerol and (Versed ?) b-4 I have the biopsy...

Also, did you have a liver scan,too?

[APKhaos]

This is very much a personal choice. Not sure if there is a right or wrong decision, just the one that suits you best.

I was infected in 1974 after a surgery, and diagnosed in 2005. Sometime around 2001 the subtle symptoms started to become more obvious. Nothing dramatic, just lowered endurance and no tolerance for alcohol. Two drinks at night and I'd be wiped out for 14 hours!! [cheap date, eh?]

At diagnosis: Geno 1A, VL 27 million, Stage 3 fibrosis.  

The QOL prognosis without TX was not something I was willing to live with. The SOC scenario was less than attractive, but getting into the VX trial was a no brainer - potentially higher probability of SVR in a far shorter treatment cycle. Now, that prognosis is unproven until this and other trials are completed through at least 12 months of follow-up. That said, it was worth the risk for me. My situation was such that I could do adapt for whatever the TX handed out. Its been rougher than I anticipated, but the family gets the worst of it. Dealing with me on a good day is bad enough :-).

So, its a personal call. I'm in awe of many folks here who balance one and two rounds of TX with a full time job, young children, and more. The chance of clearing to SVR and getting on with life without carrying the dragon is worth it in my book.

[NYgirl]

For me treatment definitely FEELS worse than the disease because I never had any symptoms at all - however - if I COULD feel the progrssion of liver damage that I have...the disease would DEFINITELY be worse than the treatment.

We have to remember that many times the people who have had NO symptoms have VERY PROGRESSIVE LIVER DAMAGE but don't know it.

It is wonderful to pray that the newer drugs are just around the corner but...someone with advanced liver damage has to look at it MUCH differently than a person who is only stage 1 and has time to wait. These drugs very well might not pan out AT ALL. Nobody knows!

For example if the liver damage could be SEEN - like a black patch on your face...it would be MUCH more apparent to some that they really have no option but to treat.  Just because you don't "see it" doesn't mean it's not there.

The disease IS the silent killer - so to me...people need to remember that and evaluate ALL of their information and not be afraid that the side effects will be worse than the effects of the disease.

Just cause you can't feel it doesn't mean it's not there.

[nitramog]

I probably got my hep c in 19 74 to 1976 my gess! I started bad symptoms in 19 84  meager QOL problems in 2000.......2002 tx  my coma complete body shut down 2004 with lots ova other symptoms I cold read a paragraph after 6 months just couldn't  under stand much doing good  my meld score is down below 16 that put me at the back of the list. Can I ask the long story of your trans plant good and bad  what happened how soon health wise! I don't now what to expect,,, martin

[BThompson4]

Twenty years is not nearly long enough to follow a hep c population to gain statistics on mortality.  The disease progresses much slower than that, but can really accelerate after a two or three  decades.  After my liver failure and coma, probably 25 years after getting hcv, I could not read a simple paragraph for almost two years until I got a liver transplant.  I was not dead, but QOL was non-existent.

Also, 26 subjects in the forty year mortality study seems a bit small to make generalizations about the effects of the virus.  More recent strains might also be more virulent than strains from the 1940s.

[nitramog]

I agree every ones different! And there needs are different, all people on these web site my situation,  is different then a lot of people     and I will remember that next time. I don't mean to sound like a guru. I just no what I wish I could ova done in my life

[nitramog]

thank you

[GrandOak]

I would agree with Tator that I don't see anyone promoting PRO and having a hard time with those who don't choose likewise.  

I don't recall anyone being lambasted for choosing not to treat.

In fact, more often than not when I see someone come here looking for someone to sway them one way or another, I see exactly the opposite.  Attempts are made to answer any questions the person may have and they are told that ultimately the decision to treat or not is theirs and theirs alone!  This often is re-enforced with the fact that whatever they should decide they should know that folks are here to support them in their decision and help keep them abreast of emerging information.

If you are looking for assurances that no one here will ever disagree with any statements you may make in a post before you will even consider making any posts, then I'm afraid that I don't think that anyone can make such a promise to you or hold everyone here on the forum to such a promise.

If you're decision is being made upon certain information that you've taken as fact, I would hope that you would be open to a sensible debate with others who may interpret it differently.  Who knows, perhaps looking at it from another's preception may change one or the others interpretation and maybe even their conclusion if the fact is crucial towards reaching it.  Also, sometimes conditions change such that a decision to treat or not has to be reversed if treatment is not working or the disease changes the rate at which it is advancing.

You need to keep in mind that everyone is not in the same boat here.  While not treating may seem comfortable for you another further along in the progression of the virus' attack upon their body may not be willing to take the same chance or someone in the exact same position may not be comfortable with the same decision.

Does that make one person right and the other wrong?  No, as it has often made stated here, and I mentioned above, the decision ultimately is one of such a personal nature that everyone has to decide for themself with what they are comfortable.

If you are going to start promoting odds and other statistics, then I would hope that you have sound rational facts to back your claims.  Anyone can make an off the wall claim or find some piece of information which appears to back their claim.

I would be interested in seeing more data to support your claim that the odds of tx impacting a person negatively is greater than the odds of living with the disease doing so.  One also needs to view these claims somewhat objectively, to say the 20 people did not see an increase in mortality when hundreds of others do does not sound like sound facts to conclude that living with the disease does not increase one's risk of developing complications.  Also, if a handfull of people develop long term complications after trying treatment when thousands complete and have no real long term adverse effects would not appear to be a sound reason to conclude that treatment is worse then not.

If one's mind is clearly set upon reaching a particular conclusion, then they most likely will be able to find some claim somewhere which assists them in confirm it, but is that wise if there is a mountain of evidence speaking to the contrary?

I guess that too is a decision each person must make for themself.  But if one is going to go around promoting such claims, then they should be prepared to support it and not feel that they can run around saying whatever they want, with or without supportive evidence, and that no one should be allowed to dispute them.

[swahnzong]

Thanks for the link, and your effort in trying to encourage others who are not treating to "talk about it."

I would like to respectfully ask, and only if you feel comfortable in answering, how you presently handle any symptoms from HCV, if any. When were you diagnosed, and have you remained stable in grade/stage since knowing? Also, does your ALT/AST remain within normal range?

I understand if you don't want to answer. Thanks for opening this thread. All the best.

[SnoWav]

When I went thru 48 wks of TX I could only focus on and drive myself hard to finish TX coulden't think that TX was anything but the only right coarse of action.Now that I have been away from the TX drugs and mindset for awhile I see many other roads to go down that could be right. The doc told me I had a 30% chance of SVR if I did a stronger 72 week TX ,that is just not good odds for the damage I would do to myself with the current posions.Going to wait for the new drugs or may not TX and just live with it.later

[Moniker]

I can't find the studies you cite. Could you give a link. I Googled "1999 report to Congress, hepatitis c" and got this:

JOURNAL ARTICLE
Estimating future hepatitis C morbidity, mortality, and costs in the United States

JB Wong, GM McQuillan, JG McHutchison and T Poynard
Department of Medicine, New England Medical Center, Tupper Research Institute, Tufts University School of Medicine, Boston, Mass., USA. ***@****

OBJECTIVES: This study estimated future morbidity, mortality, and costs resulting from hepatitis C virus (HCV). METHODS: We used a computer cohort simulation of the natural history of HCV in the US population. RESULTS: From the year 2010 through 2019, our model projected 165,900 deaths from chronic liver disease, 27,200 deaths from hepatocellular carcinoma, and $10.7 billion in direct medical expenditures for HCV. During this period, HCV may lead to 720,700 years of decompensated cirrhosis and hepatocellular carcinoma and to the loss of 1.83 million years of life in those younger than 65 at a societal cost of $21.3 and $54.2 billion, respectively. In sensitivity analysis, these estimates depended on (1) whether patients with HCV and normal transaminase levels develop progressive liver disease, (2) the extent of alcohol ingestion, and (3) the likelihood of dying from other causes related to the route of HCV acquisition. CONCLUSIONS: Our results confirm prior Centers for Disease Control and Prevention projections and suggest that HCV may lead to a substantial health and economic burden over the next 10 to 20 years.

[Moniker]

I'm usually pretty good at finding things with Google. I can't find the Dutch nurse study you cite. Will you post a link? Thanks!

[can-do-man]

Not sure i buy into the fact that the less damage the easier it is to clear. Seen to many here with very little damage relapse. If your at a late stage then we don't have much choice but to tx. Something i don't see talked about here is if you have little damage you need to think about your job, saving, marriage and other things. Could lose it all and still relapse. I'm not anti treatment but people sometimes jump before they really take time to consider everything. When i started it was 48 weeks now its up to at least 72.

For those with little damage but can't stand the thought of having this in them then i say tx. Or the stress might be worse.

Just my thoughts which i don't have many of. Whatever people decide to do i'll back them on their decison.

[Penelope1911]

UPBEAT (c5): No I am not promoting fake cures. That stuff is garbage and only works on peoples fears...

I guess I am just curious as to what you would like to promote or argue against??? Thanks, Mkeela.

[mari74]

Just recently seen Dr Jensen at University of Chicago. I will do the biopsy next week, this will give me where I stand on the Hep scale...expecting the worse?

I was also scheduled to do a "LIVER SCAN" by the doctor, too.  This is the first I have heard about this..liver scan.

He also told me to check out these medicines on various wed sites:

Vertex Vx950...he will give to me too along with reg trmt
Wyeth 796   ...is also avaliable
Roche 1626  ... """
Albuferon   ...(Human Genone Sci)"""

Dr.Jensen is also familiar with this web site. He brought it up in our conversation/office visit.    

[settecasi1]

WoW! This prompts a opinion question on my situation. (Last paragraph)

I just don't know if I am pro TX or not. I will have to admit, I am Pro- "Myself". "Pro- Me" if you know what I mean. I wish all others the best of luck. The only thing I would shoot anyone down about is not taking precautions to not spread the desease.

I am a relapsed Geno-2 after 24 Wks of TX ending Feb 28 2006. My doc says I am a fatty 2-3. 8 months after TX I still am only at half strength. No power in my hands from CPPD joint disease.
The Doc says take 6 mos off and TX again for 48 weeks. He believes the 48 weeks on my Geno-type 2 will do the trick.
If I cannot trust Dr. Gitlin...........?

I have untill April 30, 2007 to mull it over. Like all of us I have much to consider.
I now Live alone.
I did manage to stay employed for the 24 weeks of TX.

THE QUESTION:

At 48 weeks will the SX get progressivly worse or stay as they were when I ended my 24 weeks? I had seemed to have leveled out when week 24 came around. My nupregen was low and would have been addressed if I have had to go longer?

Your opinins please?

Great board - great thread.

[Penelope1911]

ok, so you are just saying that the mortality rate is ok if we don't treat then? And that the sx are nasty right?

[Upbeat]

Go Here.

          http://www.bloodbook.com/hep-vet.html

                                                    Ron

[Upbeat]

I am not trying to promote anything. I only wanted to post my feeling on the odds of damage with Tx compared to the odds of what hep-c damage can cause. I didn't want to cause any waves all I wanted to do was talk to others that have taken my approach.

                                                           Ron

[sailinlady]

My personal experience on tx was not good.  I stopped at 47 wks because I was so violently ill.  My family was not sure I would make it.  There were times I actually prayed not to and more than not times I prayed I would.  I'm not getting Godly here, just my beliefs.  I had no liver damage. I believe I had Hep C for at least 25 years.  So why did I treat?  My husband had severe fibrous and Hep C.  Never got a stage on that but we were told he was borderline cirrhosis.  He HAD to treat.  Bottom-line I was still SVR as of last week (4 mos post tx) and he relapsed after 4 wks.

We have a GI who I now have extreme respect for.  He advised we both treat.  My primary care doctor told me if I was a member of his family he would strongly urge me to treat.  I did a lot of research on the internet and I made the decision to go ahead with it.  Would I do it again??  It's taken awhile to honestly answer that question, but YES, I believe I would.  That is not to say anyone else in my situation should.  It is a personal choice.  Everyone should weigh their own options and consider their lifestyle and family, along with bx results and physicians recommendations.  It takes a toll on everyone.  Expect a year of h*ll.  The only thing I will say is if you are not comfortable in your life, DON'T do it.  You need to be committed in your decision and have the support of those who love you.  

As for herbal cures, I do not believe there is one.  That is not to say there are not herbs out there that may help you and keep HCV at bay if you take care of yourself.  I have not exploded herbal medicine to any great length.  However I do have my husband taking LIV 52 and milk thistle right now.  He has also taken up drinking again which is another road we need to go down. I have an extremely positive attitude and believe we will concur this.

This forum gave me strength when I needed it and more education than any doctor I have ever consulted with.  Is it PRO tx?  I don't know.  There have been several people on here since I started lurking around, close to 2 yrs ago, that were trying herbal remedies while waiting for more friendly tx.

Again, it is a personal decision, one only you can make.  Just don't slam the forum.  These people are here for all of us and I for one know I would not have made it without all of you.