I've posted a few times asking a lot of questions...so here I go again.
Husband just finished shot 5. (hepa c, 1a, cirrhosis, stage---next to
last one) can't remember the number. He is feeling pretty tuff...hurting
at joints. Hasn't worked 2 of the last 5 weeks. He just had the monthly
blood work to see the viral load...he has weekly blood work also.
I do understand that his chances of clearing this really is a long shot.
Nurse has said that if nothing else that while on tx the liver is
resting. Just what does this mean? I assume that his liver isn't getting
any worse...as in limbo. Nurse also stated that if nothing else tx
"should" give him a longer life. Doc keeps saying never miss a dose of
tx. Those are the people that clear the virus. Now honestly does he
really have a chance to clear this? From what I have read...I don't
think so. I feel so sorry for him. Before he was so week & tired, and
now feeling worse. To think he has 43 more weeks to go (unless he has to
do the 72 week tx) I wonder if it is worth it. If I were in his shoes,
don't know if I would even try. Does he even have a chance to feel
better after all of this?
Sorry for the long post. I just feel so helpless in all of this. Just
wish I could make all of "this" go away. After all he is my husband & I
love the old fart. Thanks for listening....Deb
Debo,
Unfortunately your husband must work while taking the tx. That is not an
ideal situation. His liver will have a rest and should start regenerating
healthy cells while his immune system is boosted by the Interferon and the
virons are chased about by the gunk poisons in the pills. That is factual.
The nurse was correct in this respect, as I am sure many of us in this group
can testify. In my case, I flunked the six month post-tx qualitative check,
so I am a relapser, and have chosen to live with my unhealthy liver as best
I can until something a little less daunting than extended combo therapy,
comes along. If he can manage to find a way to relax and concentrate on
killing the dragon while removing unimportant and confounding things like a
job (yes, a job is not important when you have cirrohsis and are trying your
best to keep on living), then perhaps the stress leverage that needing a job
while being severly sick, will fade from his demanding mind. He needs
peace.
Your are a wonderful caregiver to be so relentless in your approach, peace
to you too.
cactus jammies ======== (Bob) ========
> I've posted a few times asking a lot of questions...so here I go again.
>
[quoted text clipped - 19 lines]
> wish I could make all of "this" go away. After all he is my husband & I
> love the old fart. Thanks for listening....Deb
>I've posted a few times asking a lot of questions...so here I go again.
>
[quoted text clipped - 19 lines]
>wish I could make all of "this" go away. After all he is my husband & I
>love the old fart. Thanks for listening....Deb
And I'm sure your husband appreciates your concern and caring - and your love,
of course.
I'm not certain how to interpret the staging - you say "next to last" but you
also say "cirrhosis". Normally, "cirrhosis" is Stage 4 - the last Stage -
using the METAVIR scoring system, which I'm certain is the most commonly used
scale.
So, he's either Stage 3: bridging fibrosis - or he's Stage 4: cirrhosis.
Possibly you lumped the "Activity" index with the "Staging" index? While the
METAVIR scale estimates the level of accumulated damage, there is another
commonly used scale that grades the level of inflammation in the liver tissue.
This is called the "Knodell" score, which also ranges from Grade 0 (no
inflammation) through Grade 4 (marked inflammation).
In any case, it's mostly academic at this point, as your husband is on
treatment, which will work or won't work. At the end of therapy, the next
liver assessment will be the significant one.
Meanwhile....Yes, the success rate isn't great - or even good - with genotype
one and frank liver damage, at least according to studies where they sort out
the cohort to where you can make out the differences per groups.
But the success rate is surely high enough to be worth a good try, especially
under such motivating conditions.
By most accounts, your nurses comments are true, with the assumption that your
husband's liver function tests are showing a solid reduction in inflammation
(these would be indicated by the "ALT" and "AST" enzyme measurements).
Reduction in inflammation translates to "rest", which at the least means
slower accumulation of scar tissue, but even better, may also allow the liver
to regenerate some useful tissue.
Your doctor's admonition - while proper - is a bit less accurate. Missing an
*occasional* dose would not mean the whole treatment deal goes in the toilet.
At the other end of the "conventional wisdom" spectrum, lies the "80% Rule",
which states "80% of dose taken at least 80% of the time in the first 80% of
treatment duration" will result in very nearly the same rate of success as
being 100% compliant across the board.
Now, I don't like to even think about being *ONLY* 80% compliant when it comes
to treatment compliance for a potentially life-affecting disease. And "brain
fog" is a very real side-effect of treatment - which can lead to all kinds of
bad decisions.
So to make it simple, here's the rule I followed from Day 1 through Day 336 :
TAKE EVERY DAMNED DOSE ON TIME, ALL THE TIME, ALWAYS!
So simple even a Riba-addled hepper can get it ;-)
Cheers
/greyhackles
greyhackles - 18 Aug 2007 15:46 GMT
ps: fwiw, I was genotype 1b, infected for over three decades, Metavir score
was 2-3 (two going on three), Knodell score was a solid 3, LFTs were roughly
three times higher than the upper normal limit. I did a ton of research and
figured I had roughly a 35% chance of success, but I had no real other
options, either.
48 weeks on weight-based Peg-Intron/Ribavirin ended with SVR, now almost two
years later.
Hang in there and hope for good luck.
/greyhackles
anonymousone - 19 Aug 2007 06:35 GMT
> ps: fwiw, I was genotype 1b, infected for over three decades, Metavir score
> was 2-3 (two going on three), Knodell score was a solid 3, LFTs were roughly
[quoted text clipped - 8 lines]
>
> /greyhackles
I was stage 3 grade 3 and had it for at least 30 years.
Been off treatment for nearly 6 months. Alt levels have been normal
for the last 4 tests.Was virus free at the
end of treatment with the most sensitive test available. .