Stage 2, Grade 2, 2 tx or not 2 tx?

[eureka254]

Hello, to all you brave Dragonslayers,
What other data besides Stage/Grade should be considered in the decision-making process? Does/should the VL count be an indication of waiting or not waiting?  My husband has already had a large hepatoma removed (docs removed his left lobe and warned that with his mild cirrhosis not to expect much, if any, regeneration) -- does the fact that he only has his right lobe remaining make the need to treat more urgent?  We've met one hepatologist who's anxious to treat, but really hasn't explained why besides the fact that my husband has HCV.  We are seeking a second opinion in the coming weeks, but what's especially concerning now is that his blood AFP is starting to rise.  Does anyone know how the standard tx relates to someone who's already had an HCC/liver resection?

[Mikkimoe]

Good theory on the VL - I tend to agree with you - I am proof of it. My viral load seems to be directly correlated to my Enbrel shots that I take weekly for my RA. When I had just got a shot which bombards my immune system and took the VL test the reading was high like 3 mil - when I was due a shot and took it was as low as 41,000. These tests were just 2 to 3 weeks apart from each other. (41,000 - 3,730,000 - 680,000).

The bad news is that the tx may cause a very bad autoimmune syndrome that I may not be able to pull out of (5% chance) And I would live the rest of my life in severe pain (like when I have a flare now - but continuous!) This was the first I had heard of this today at the apt at Cedars. Have you heard this before? He said tx is risky with us but that I could take my meds I'm currently on. He said to use the weight based Pegintron and rib and to get PCR at 2 weeks if UND then only tx for 2-3 months.

.....One more opinion next week and then it's my turn to make the tough decisions.

[jmjm530]

Forgot to mention that there is some sort of device -- screen I think -- that recirculates blood and removes some of the virus. I believe this, and similar devices, were discussed in a thread that HepatitisResearcher (HR) participated in. Maybe you can find it in the archives but if memory serves me, the device is not being used here in the States. One point I brought up in that thread was would artificially lowering viral load (with a device like this) have the same benefit as a naturally low viral load. In the latter, one might theorize that the reason the viral load is low is because the immune system is strong at that particular point, i.e. it's not really the low viral load associated with SVR but a strong immune system at a given point in time. But again, just theorizing.

[jmjm530]

Viral load can jump around a lot, but wish I knew a way to either predict or control it. You will hear claims from some quarters, but not sure how reliable. Dr. Zhang, an MD (I think) and herbologist in NYC has treated some here and I believe they associated a drop in viral load with his herbs. You can find mention of him on Dr. Weil's web site and I believe he has been invited present his views to hepatoloigsts at several hospitals. Other than that, if you had the luxury of time, you could get your meds in advance -- or set up a system where you could get them right away -- and then test viral load monthly and jump into treatment as soon as you reached some pre-designated number. You might be lucky and hit it the first or second month, or you might never hit it. Just a thought.

-- Jim

[eureka254]

"Lucky..."
-----------
Yeah, it's crazy to think that nearly having a heart attack actually saved my husband's life... and as for feeling "UGH" about your husband refusing testing... a case of opposites attract? ;)  I know that it was one of the first things I did when I found out my husband was positive for HCV, but if the shoe was on the other foot? I dunno...
(And, if any consolation, yes, odds are low... we've been together almost 22 years -- and I tested no HCV).  

Maybe your husband will be more agreeable to getting tested after you finish treatment? Such an undertaking... hats off to you... and may God be with you.  I would imagine that, though the risk is low that he'd be HCV, maybe he's just trying to protect you and prevent any possible additional stresses before you enter the cave to slay the dragon...

[Mikkimoe]

Lucky they found it! Yea, guess I know about baby steps...I can't even get my husband to take a blood test to see if he has it. - UGH. We've been together for 9 years...the odds seem to really vary but remain low.

[Mr.Bill]

Hello, Is there any info about viral load and how we can reduce it  naturally before treatment ?   . I am geno 2 . VL Jan '07-- 97,400  /  Jun'07--25,500 /  Dec '07--- 6,900,000. I am thinking of beginning treatment . I have read that those with lower VL count do better with treatment . Bill

[eureka254]

Nice to hear from the costume designer! :)

"where does the time go..."  
---------------------------
It sometimes seems as if all I've been doing is reading and researching this last year!...and I still feel like it's not enough.  I've always been an information/data junkie, so you can imagine...

I guess somehow, too, it's a good way to feed and sate my anxiety and concern a little, anyway.  My research started out with HCC, then to HCV, and it's led me to this forum... which I'm so glad I found.  You folks have so much info (not to mention have so much fun)...

My husband is the asymptomatic type (if you don't count the cancer :P... which, incidentally, was found as a result of a cardio workup for angina, go figure), so he hasn't felt the need to pursue treatment aggressively for the Hep, but he's starting to realize the risks... I'm just glad he's willing to consider all the options. I told him about this forum, and we talk about what I read/learn, but sometimes I can see it really scares and depresses him too... so we take slow, small steps.  I can only say thank you for helping us in our journey.
~eureka

[Mikkimoe]

although I wish "Mikki" wouldn't keep dressing me up in those outfits for her photo shoots. ...
__________________________________________________________________
Jim - As I recall you were quite fond of those feathers........they really suit you.lol

Eureka....all I can say is where does the time go when you are researching? I have miles of articles and studies and after 3 months it is finally starting to sink in...just in time to start tx. Just got my last OK from my cardio so should be soon.
To me there was no other decision then to treat - I'm geno 2b, better odds. I am early stage but symptomatic and want no part of this thing in my body - it has taken to much of my life away already. I have been sick for years.
Like Jim says study up and ask alot of questions...is your husband on the site as well? Good idea to get him involved.

[jmjm530]

We all start out "dumb" about Hep C. It's not like they teach it to you in school or something. Just take your time, learn at your own speed, and ask the doc whatever questions are on your mind. Above all, never feel pressured into making a decision if you're not ready yet. Getting a second (or even third) opinion is also not a bad idea, esp if your doc isn't one of the overly communicative ones. And keep asking questions here, even "dumb" ones. All of us have done that when we arrived.

[eureka254]

" The fact that your husband was diagosed with Hep C means he has a viral load. "
--------
Duh, me.  Feeling dumb right now :P.  Hepatologist didn't really explain the "data" stuff... he just kept talking about treatment (he was certainly not a doc of the "wait and see" persuasion)... I guess it'll be up to us to figure the right questions to ask -- and you've been a great help with my now growing list of questions.  Thanks, angel ;).
~eur

[jmjm530]

eureka: so I'm presuming that if a doctor is strongly recommending treatment it's because there is a viral load?
----------------------------------
If you don't have a viral load then you don't have Hepatitis C. So, of course, there's nothing to treat. The fact that your husband was diagosed with Hep C means he has a viral load.

As to treatment criteria, it's more complicated than that, as many factors can enter into the decision with the amount of viral load not being the major factor. Two major factors that can influence the decision whether or not to treat are "genotype" and the amount of liver damage, as I mentioned in more detail previously in this thread.  I do not know how your husband's prior hepatoma fits into the equation.

Hopefully, you're seeing a liver specialist (hepatologist) who can explain all this to you with benefit of your husband's medical history at hand,

-- Jim

[eureka254]

Thanks for the clarification.  The suggestion that it might reverse damage is something I hadn't considered or known was part of the equation... so I'm presuming that if a doctor is strongly recommending treatment it's because there is a viral load?  And there might be an argument not to tx if there is none?  If, by chance, you might be able to point me to the studies/journals that (1) discuss SVR and and reversal of fibrosis and (2) lessening of HCC incidence?  (Recurrence of HCC is something I don't see much discussion about here... have read some posts from ppl who had transplants, but they seemed to not have had HCC...)

[jmjm530]

While the quantification of VL (high, low, medium) may not correlate with liver damage -- ANY viral load means you have an active Hep C infection. And an active infection means progressive liver damage in most over the years. So one primary reason why we treat is to get to an undetectible viral load, i.e.SVR. As SVR, studies suggest that the progression of fibrosis in many cases will stop and even reverse. Some also suggest less incidence of HCC (liver cancer) if you are SVR. So, while SVR doesn't equate to "non-damage' as you say, it does equate to much better prospects for your liver over time.

Others may point out that SVR confers other benefits such as a lesseining of what are termed "extra-hepatatic" symptons, although I personally wonder about this since many report more issues post treatment than pre-treatment -- but that's really another subject.

-- Jim

[eureka254]

A little confused, and probably a dumb question, but if VL is not directly correlated to liver damage, why is SVR so important?  (In my mind, the question being, if VL does not equate to measurement of liver damage, why would one assume SVR would equate to non-damage?)

[jmjm530]

Biopsy is still considered the "gold standard" in terms of assessing liver damage. A non-invasive device called "Fibroscan" is now in trial seeking FDA approval. A good liver specialist will also further evaluate liver damage on a clinical basis using blood work, imaging studies, physical exam, etc.

Geno 1 is the most difficult to treat and also the most common in this country. So statistically that's probably the genotype your husband has, but of course you should confirm. It is fortunate you live near a big University Hospital, but keep in mind that sometimes it's difficult to get truly objective second opinions from collegues who practice in the same medical center. All too often, the first or primary doctor's initial diagnosis will not be overly questioned. The specifics and seemingly conflicting info you mention re his biopsy stage should be addressed by a liver specialist who has access to both to your husband's history, his reports, and probably the actual biopsy slides. And yes, I am that "guardian angel" in the picture although I wish "Mikki" wouldn't keep dressing me up in those outfits for her photo shoots.

-- Jim

[eureka254]

ty ( ...I'm beginning to think you might really be that Guardian angel in the pic lol)

So, is there a  reliable 'measurement' or a 'predictor' of the progress of liver damage, or is biopsy the only way to tell?  The pathologists assessed the G2S2 status, but it was the oncological surgeon who did the liver resection who stated after the surgery that he saw 'MILD cirrhosis'.  It must have been very mild as they had said originally resection was not an option in the presence of cirrhosis (if detected by biopsy prior to the surgery, which it was not.)  I find it hard to understand how one doc would assess it macroscopically, while pathologists doing it microscopically don't address it.

The hepatologist did say the genotype in question was considered less responsive to tx, so I'm presuming it to be Geno 1 from what I've learned here, but I will be sure to ask at our next visit for specifics. (Doc quoted 20-40% response rate in relation to genotype.)

I both live near and work for a big University Hospital, so I'm fortunate enough to have many specialist of all fields closeby.  Despite all the expertise, though, the decision is still excruciatingly confusing and difficult.  Thanks for helping to shed light and your feedback.~eur

[jmjm530]

Should have mentioned that in addition to consulting with the doctors, don't be afraid to roll up your sleeves and do a little research on your own. Spending a day or two (not an hour or two) back reading posts here will give you another perspective on treatment.

There are also more professionally-oriented sites you can seek out if you want to read study data by itself. Just remember, none of us are doctors here, so you will get a lot of opinions and often these opinions will conflict with one another. And frankly there's a lot of misinformation mixed up in the good information that is difficult to sort out when you're new to the subject -- so don't take anything as gospel -- just sort of surf through things in the beginning and when a wave looks interesting, ride it a bit outside the forum either by discussing with your doctor and/or doing independent research.

Never base an important tx decision on something you read here, but certainly use the information as a starting point for your own educational journey.

-- Jim

[jmjm530]

Welcome to the forum. You're asking all the right questions.

First to what doesn't matter. Viral load really doesn't matter in the sense that at any point in time it's unrelated to liver damage.

As to the right lobe missing and his "rising AFP", these are both questions for a liver specialist (hepatologist) -- both for your current and for your upcoming consult. Neither appeared to be pointed out regarding the treatment decision by your current doctor -- so maybe they weren't considerations, or maybe he just didn't communicate well. Also, I would further question both doctors regarding the whole "regeneration" issue. You state your husband is stage 2. That's fibrosis, not "cirhossis" as you state.

But leaving those two issues out -- and speaking very generally because of the limited information about your husband available, not to mention that we're not doctors -- there are a number of considerations in the decision-making process. Some objective. Some subjective.

Stage and genotype are two of the most important facts to know, and I didn't see you mention "genotype" which is the type of Hepaptis C your husband has. Genotype 1 is the most common in this country and is the hardest to treat. In general, tx takes 48 weeks with a success rate of around 50%. Genotypes 2 and 3, however, generally on treat for 24 weeks with a success rate of around 80%.

So, considering that treatment has certain hardships and risks, you can see that the risk/reward ration for treatment favors geno 2's and 3's over geno 1's.

Then there's stage. Stage 2 is considered moderate liver damage -- not as good as stage 0 or 1, but not stage 3 or 4 either. Stage is important because one of the reasons many of us treat is to ward off stage 4, cirrhosis. So on one hand you husband has more time than a stage 3, but less time than a stage 1. How much more or less time is very hard to predict. His age is not in his favor, as I assume by his Vietnam history that's he's around 60. Some studies show that cirrhosis tends to occur with many of us by our mid-60's, but I'm working from memory here.

You should also know that there are some very promising drugs in trial. Right now one drug -- Telaprevir -- is showing better than 50-50 success in half the time of current treatments. That means half the exposure to the treatment drugs.

Your husband's decision is not an easy one. On one hand, his liver damage is only moderate, but on the other hand his age statistically may suggest that his liver damage could -- but not necessarily -- will accelerate within the next five years or so.

It's good that you're getting a second opinion. Hopefully, your questions will get answered, both re the specfics of his prior lobe removal and AFP changes, the latter of which may or may not be meaningful. If still not clarified, do not be afraid to go back to the doctors for more clarification, or for that matter to seek out even another consult.

I spoke to liver specialists before I treated and several more during tx. This helped me better formulate a plan and treatment approach. Opinions were often not the same I would sometimes play one as devil's advocate against the other, until I reached some clarity in my own mind.

All the best moving forward,

-- Jim