10 years Cirrhotic...Worth Treating??

[doncheery]

It has been a while since I posted. Have been waiting for tests and results. In Canada things move somewhat slower. To make a 6 month long story short....April diagnosis..Hep C . specialist.....change specialist...tests...appointment Fibroscan...results..( all in French..my aching freaking head ) ..apparently 10 years cirrhotic...( has to be plus thirty years since exposure )  ..they want to treat ASAP....Victrellis....full 48 week as I have been cirrhotic for so long. My understanding is that the longer or more severe your Cirrhosis the less efficacious the treatment. Dr will not give me odds...just says treat. Question...As I am compensated at this point ...working hard..training hard...etc etc..is it worth it to treat..or am  going to go through 48 weeks of misery that is doomed to fail. Any input will be greatly appreciated. Thanks in advance.      

[doncheery]

I just got home from work and read the previous posts. A little ambiguous, what is it you are really trying to say?
OK just goofing. I get it. Always did actually.I hope I did not seem thoughtless.  Frankly the odds seem much better than I had anticipated  Certainly at 50-50 or even 40-60, 30-70 etc I would not hesitate to treat. Get it down to 1. 2 or 3 in a hundred and it would give me pause for thought. I had no idea what the odds were , hence the post. Great responses with marvelous info. . I was in shock that Dr told me I had cirrhosis for ten years. Did not even know you could last that long with it. Totally pissed at my family MD who knew my history and missed all the small warning signs on blood work in 2002, 2004, 2006, 07. Not testing for Hep C with minor elevations to ALT AST,  border line diabetes, high cholesterol etc.  Here take a pill.


I am grateful for the frank and informed opinions expressed here. and for the supportive informed messages I have received. I also have no illusions regarding the manifestations of ESLD and HCC. Hector asked "How much do you value your life" ?  I am in the best place I have ever been, physically, spiritually and physically. Suffice it to say I value my life quite a bit. Yet not at any cost. Not to the point where I am no longer myself.  

Every day is great. Meditation has been is a boon. Sleep well. No stress.
I will be even more proactive regarding treatment in large part due to your responses as they have provided some clarity and imparted some urgency. ( more than dr)

Speaking of boons, Hector's posts. Outstanding. Inspirational that you reach out and support others with your information and passion  when you have so much on your plate. I believe you are touching many lives in a positive way. Special.  
Thank you to all. For what it is worth I will post when I start treatment. Good Luck.

[eureka254]

My very biased viewpoint is: Yes.  Unquestionably and undoubtedly "worth" treating.  Life is worth living, with all its ups and downs... treatment is worth trying for all the same reasons.  No one can say whether your treatment will have any ill effects, nor can anyone say it won't, and while it certainly has the potential for failure, any chance at success is worth grabbing with both hands -- while you are still able.  

There's no question that being cirrhotic raises the odds, but plenty of cirrhotics have been successful, and being compensated is very much in your favor... no better time than NOW to treat.  The progression of cirrhosis is unpredictable, and what is true today may not hold out for tomorrow or the day after. I'm not trying to fear-monger, but my husband was diagnosed with hep c, cirrhosis, and liver cancer simultaneously, so my singular perspective is treat as aggressively as you can while you have no complications.  

My husband went through liver cancer surgery and had his left lobe removed, and it was enough the first time around to convince him any treatment was worth doing to not have liver cancer again, and he completed 137 weeks of hcv treatment to get rid of the virus.  However, his cancer has returned; liver cancer is exceedingly aggressive and very difficult to cure once it starts.

My advice? Get rid of that hcv as soon as you can, before you become the 1/20 cirrhotics every year that get diagnosed with liver cancer -- because once you cross that bridge, there's no turning back. ~eureka

[frijole]

I cannot say anything more than what has been said by the honorable forum members.  Having just recently been diagnosed with compensated cirrhosis, I can say that the term is frightening.  However, decompensated cirrhosis is so much more frightening that now compensaged cirrhosis sounds like something that you can reverse or at least stop from progressing.  

Is it worth it?  Of course.  It is only 48 weeks.  I have 6 down and 42 to go.  I am on Victrelis.  I would encourage you to join us.  So far it is not that bad for me.  I treated before for 56 weeks and relapsed.  I am encouraged by my chances now and hope to put all of this behind me by July, 2012.

frijole

[orphanedhawk]

My original diagnosis was decompensated cirrhosis.
Since I stubbornly went into denial, I didn't begin treatment for a full year.
I actually cleared the virus at 12-13 weeks, then relapsed and did have a transplant 2 years later.
Now, I'm beginning treatment again.
I truly think if I'd done the treatment sooner, before becoming decompensated, it would have worked.
If I were in your shoes, I'd do the treatment.
Even if it doesn't work, it can help your liver.

Only you can decided.
Good luck.
OH

[Aquisi]

Thanks Hector, Powerful stuff, makes me want to get going with my tx. I appreciate your comments.

[HectorSF]

As Will said, To be blunt...to do nothing is almost assuredly a very good chance you will progress to "decompensatedcirrhosis" and ESLD.

Is it worth it? It depends on how much you value your life. I don't mean this in a joking way. Only you can answer the question. Is it worth going through 48 weeks of temporary discomfort vs. having a fatal illness that will probably go on for years as your body breaks down and you lose normal body functions and experience life threatening medical emergencies until you are unable to even care for yourself. If you are one of the lucky ones after going through that "trial by fire" you will get a donor liver to save your life. It can then take up to a year of your life to recover from the transplant and you will need to take medicine every day for the rest of your life to remain healthy. You will be monitored for the rest of your life by the transplant center to make sure you don't reject your new liver. As you will have a weakened immune system, you will be prone to bacterial, viral or fungal infections that can be be fatal to you. Also you will be prone to various cancers, again because of your weakened immune system.
Oh, did I mention that you will still need to treat your hepatitis C after transplant, as it will infect your new liver and that 30% of post-transplant patients with previous hepatitis C will decompensate and have their new liver fail within 5 years? Then you would be in the position of getting another donor liver or dying.

As far as how much you will suffer both physically and mentally there are no words to even begin to describe that.

Why do I tell you this? I don't say this to over dramatize a worse case scenario. This is not something I am imagining or read in some article. This is the life me an my friends at the transplant center are living since failing treatment and having decompensated (me) and been diagnosed with liver cancer in June.

In my biased opinion, any chance of stopping advancing cirrhosis and either eventual liver failure or liver cancer (HCC) is worth trying as the alternative is something anybody who values their life and who understand the true risk vs. benefit is really a no brainer. To have the chance to stop having my fate vs. doing nothing and pretty much guaranteeing years of future debilitating illness is an easy one from where I am standing.

In fact I still planned on trying treatment this fall in hopes of avoiding a transplant and all that goes with it. As I was planning on starting treatment I had an MRI scan of my liver in May. I was then diagnosed with a 1.4 cm tumor in my liver. I am currently letting my tumor grow so that I can get exception points toward moving up the transplant list. My hepatologist and the tumor board recommended I do this otherwise I have pretty much no chance of getting a transplant before my liver cancer kills me in the next few years. How many people have you ever heard of that don't treat their cancer as soon as it is found? Welcome to the world of liver transplants! Since I have liver cancer my only hope of surviving is to get a new liver. It is the only chance of cure.

I am 59. At our age liver disease progresses more quickly than in the previous decades. Waiting can have irreversible consequences. All I am try to say is if you have a chance, whatever the odds of success are, of avoiding the fate of myself and many of my good friends I would advise you to do it. I don't really know what more to say.

I wish you good luck and a long and healthy life.
Hector

[doncheery]

Very encouraging . Thank you

[can-do-man]

Also dx over 6 years ago with cirrhosis, treated the 48 weeks with Victrelis and now SVR, so yes it is worth it. There have been others here with cirrhosis that also treated with VIC and are SVR.

willb, not sure how much you can compare the 2 drugs being cirrhotic, from what i remember Incivek didn't treat near as many people with cirrhosis as Vic did.

[willbb]

Good luck Don...wishing you the best..
Will

[doncheery]

Thank you again. Great info

[willbb]

:http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvocates/ucm256328.htm

This is the results for chirrotics in the" advance" trial:

Twenty-one subjects had cirrhosis at baseline and the overall SVR in these subjects was 62% (13/21). Among subjects with cirrhosis, 43% (9/21) achieved an eRVR and of those 78% (7/9) achieved SVR.

This is the" illuminate "trial:


ThisSixty-one (11%) of subjects had cirrhosis at baseline. Among subjects with cirrhosis, 30 (49%) achieved an eRVR: 18 were randomized to T12/PR24 and 12 to T12/PR48. The SVR rates were 67% (12/18) for the T12/PR24 group and 92% (11/12) for the T12/PR48 group.

[doncheery]

Although Incivek has been cleared for use in Canada it seems Victrellis is drug of choice here. My Dr is at the top unit in Quebec and if I treat ASAP I will be only her second patient on triple therapy. One of the first in Quebec.

[doncheery]

Thanks willbb. A factual logical response. I guess I have seen so many people with cancer go through chemo and radiation only to diminish their remaining time that I am wary. Actually as Elmer Fudd would say.."vewy wawry"
Very much appreciated. Thank you

[willbb]

Also ..Altho your doctor has recommended VIc..it seems  INCI.( in trials) had slighly better results for tx. naives with chirrosis..aprrox. 62 -67%  

I will look at the data and post for you
Will

[doncheery]

Thank you both for responding. As to the "apparently" 10 years cirrhotic I asked how she could tell and received a Gallic shrug and a somewhat ambiguous reply as to results of Fibroscam. Assuming she meant the extent of fibrosis etc.  
That all said. Does the cirrhosis reduce the odds of a positive result?

[willbb]

Sorry to hear of the cirrhosis diagnosis,however a couple of things come to mind. Altho,FS is fairly accurate in diagnosing   cirrhosis ,it is still prone to error ....about 15% of the time,so you may think about having another one  or a biopsy to confirm such.
If you did not have a previous diagnostic test,how did they ascertain that you have been cirrhotic for ten years?
Having said that, If in fact you have compensated cirrhosis ,with the new P.I there is still  a chance to clear the virus.I believe in trials with VIC the results were approx. 45% success for tx. naives(that were cirrhotic).

You  ask ..should I go thru 48 weeks of misery  that is doomed to fail?
Two things .1) not every body treating goes thru  all the misery you sometimes read about..actually the fact is that many get thru it with fairly mild side effects. (not everyone ,but many) and 2) by the looks of the odds of success above  almost the same amount of chirrotics that treat with this drug are deemed successful as are "doomed to fail" as you say.
To be blunt...to do nothing is almost assuredly a very good chance you will progress to "decompensatedcirrhosis" and ESLD.
Again ..with almost a 50/50 chance of stopping that happening ...it would  seem to treat is an excellent option.
Personally I would follow your doctors advice and treat ASAP before the damage gets worse...however always apersonal desocion .

Good luck with whatever you decide...
Will

[somuchmore2]

I am cirrhotic (grade 4), date infected ' 73, found out in ' 97, treated ' 98 & ' 02 but non-responder, nearly left here in ' 07 during major bleed. TODAY undetected.

So I treat. The new treatment is difficult, but doable.

[paen53]

Hi Don,

I can appreciate your quandary as I was once in your shoes and wrestled with the same thoughts. Not sure how they determined that you have been cirrhotic for "apparently 10 years"; but what matters is that you are NOW and you know you are compensated at this point.

Treating HCV with cirrhosis is do-able but needs a well-experienced Dr. to see you thru it. I heard the odds before I began treatment almost three years ago now - anywhere from 10-30 percent, depending on who you talked to. But in my mind, I started viewing it as 10-30 percent more chance to clear the virus as opposed to doing nothing. With the new meds, your chances are better than ever.

I did the old SOC - an enhanced version because of my cirrhosis and for 72 weeks and got my SVR. It was hard, grueling even at times, but still able to work throughout (office job) with minimal days off for appointments and sx. Working at healing my liver now and feel better now 1 1/2 years post than I have felt in a very long time. IMHO, it's well worth it!!!

Best of luck to you, Pam