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Avatar universal

JmJm530 -- From Stage 3-4 to Normal -- Six Years Post TX

Just got my six year post tx, and it was 4.5kPa. Apparently, that’s pretty good and normal (stage 0-1) as the tech said it was lower than his scan--  and he’s never had any sort of liver disease!

My previous scans were in 2005, mid treatment (9.5 kPa) and in 2006, six months post tx (8 kPa). These correspond with stages (2-3), and early stage 2, respectively -- at least according to the correlations at the time of the initial Fibroscan trials.

Pre-Treatment I was staged at either 3-4 or 2-3 (depending on who read the slides) via liver biopsy.

It’s funny, because I almost passed on the Fibroscan, as it’s been so many years since SVR, and regardless of results, there wasn’t really anything I could (or would want to) do. Thankfully, the results were good. Just wish the rest of me was that normal. LOL.

A little hazy background, as it’s been awhile, and I couldn’t locate my exact notes:

Stated tx in early 2005. Double Dosed Peg for ther first 4? or so weeks, on high dose Ribavirin strategy that ended me in the ER within a few weeks of starting tx. After a few days off ribavirin, I then again continued on high dose ribavirin (with Procrit) for the duration of my 60 week treatment. Tons of sfx. It was not a pleasant experience.

I had a two log drop within a week or two (viral load was tested weekly) and UND within 4-6 week, can’t remember. In any event, it was considered an RVR. I was still told to tx for 60 weeks, based on both age – over 50 – and advanced fibrosis, as my only biopsy reading at that time was stage 3-4.

As those who have read some of my posts, I had very mixed feelings about tx for those with little or no liver damage – but that said, it certainly appears that tx can reverse fibrosis/cirrhosis, not only based on what I’ve read, but also on my own scan results.

To any of my old friends still here, you’re always in my heart, and I hope the very best for each and every one of you.

-- Jim
53 Responses
163305 tn?1333672171
How very nice to see you posting, and with good news as well!

Briefly, tonight is my last shot, doing SOC post tp and und since week 4.
Hope to be posting about SVR before the year is out.

Wishing you only the best~
Avatar universal
Couldn't find an "edit" function (I thought there used to be one?) but in any event, in case it wasn't clear, the "scan" I was referring to is the Fibroscan. Also, my tx back then was Pegasys (Peg Interferon) and Ribavirin. None of the new drugs.
Avatar universal
jm,
this is very encouraging news, I had asked about this before here, but the people who answered had not retested their liver since SVR, so couldn't really say from their personal experience.  Thanks for sharing!

OH, Congrats on your last shot!  I have a good feeling about seeing that SVR post in 6 months from you!
Avatar universal
It is good to hear good news.
Avatar universal
OH.....    congrats on your last shot!
Avatar universal
It's so nice to see you here and especially with such great news!
I recently disagreed with a doctor here who stated that fibrosis/cirrhosis could not reverse. I cited a few examples from the HCV world and my own experience. Now I have yours if I need it.

Your news is fantastic.

Good luck,
Mike
Avatar universal
1offtheclub22: OH, Congrats on your last shot!  I have a good feeling about seeing that SVR post in 6 months from you!
----------
My last shot was six years ago :) SVR for five and a half years, or as my doc says "cured".

-- Jim
Avatar universal
Great News, Jim, and Thanks for posting.
Thanks for still thinking of us heppers. I really appreciate all the great info you put up on this forum over the years.
1425387 tn?1332557862
Congrats-excellent news!!! I remember reading your very useful posts when I was just diagnosed almost 2 years ago. It is great to see your liver recover like that---we only with the rest of the body would be able to do the same. Once again, congrats and good luck
Avatar universal
Oh my its Jim... Glad to hear all is well
1815939 tn?1377995399
Congratulations!  Not only on your 5.5 years of SVR but also on the reversal of liver damage. That is really wonderful news. It is encouraging to hear of success stories.
Avatar universal
Jm,
that part of my post  about the last shot was commenting on Orphanedhawks statement actually, sorry i jacked your thread a little, ha....but congrats on the 6 yrs of being HCV free as well as the reversal of liver damage!
Avatar universal
How wonderful for you!!!

Thanks for coming back to give us hope!
190885 tn?1333029491
really great news jim! ...i was afraid to ask what happened to you...you were so much help here years ago...thanks for the post....billy
683664 tn?1330969924
Awesome news!  It is good to know that the liver really does regenerate and heal itself over time, and a nice thing to look forward to.  Thanks for sharing this.

I'm curious about what state you're in, where fibroscan is available.  Whereas I would not want to have another (4th!) biopsy, the fibroscan sounds like a great way to get that kind of positive feedback.

Good to see you back here!
Avatar universal
You never call, you never write.....
I've often wondered what happened to you.  : )
Your many threads bounce to the top of the forum from time to time and it always causes me to think back on older times.  Many people probably wonder what you've been up to and how you have been faring.

I still have still not treated but I'm about to have my medical records sent to a closer facility and take a swing at a no-interferon treatment, there are several in the works and it appears they may be approved in about 3 years;call it 2015.

I'm very glad to hear about your improved staging.  6 Years, eh?  Oh my gawd, time flies, even when you aren't having fun.

Thanks for checking in; always a pleasure.

willy
1130586 tn?1316269892
Thanks for posting your encouraging post Tx success ! That you were able to have regression of fibroses post tx , is fantastic and what we all hope to experience : )

Cheers, Aaron
238010 tn?1420409872
Fabulous news! I don't get on here myself as much as I'd like now (I've decided to wait for a non-interferon tx) so I lucked out in seeing a post from an old timer I respect and appreciate.

Great to hear about the fibrosis reduction, gives us all something to look forward to.

Be well Jim!

smaug

Avatar universal
Hey Jim, great to hear from you...a member of the 'old club'...and with great news!!!   My FibroSure tests went from a low Stage 3 after TX ended, to a high Stage 1 about a year ago on testing.  I am very encouraged on that front!

How have the rosacea, psoriasis, and neuropathy type sx been doing in the past few years.  I hope things are clearing up.  I still have about the same degree of Rosacea as when I finished tx.  Also, now exploring Low Testosterone as a potential cause of some of my sx.  I am right at 300, and was 450 just two years ago.  Looks like its plummeting, and all of my sx match up to the poster boy for Low T, on the websites.  

Didn't you have some tests and discussions about Testosterone as well, a few years ago?  Any follow up or answers on that front.

I wish you the best of luck Jim.  It really is good to hear from you and to hear a very encouraging story.  You did save your liver, and that's what all the pain and suffering was all about!  I do try to keep that in context!!

Enjoy life, and visit once and awhile!

DoubleDose
Avatar universal
Congrats to you! It is so wonderful to see good news posted!
I'm wondering, in hindsight, do you actually feel better w/o the virus than you did with it? Pre tx, not while in tx.
So many sources say there are basically no symptoms with HCV, but people claim to be fatigued/weak/achy PRIOR to tx. As one who has been there and back, do you think you had pre tx symptoms, or do you feel just the same being without HCV?
Just curious....starting tx on Tuesday.
Again, so happy for your fortunate outcome, it gives others a lot of hope to forge ahead!
Avatar universal
Good to hear from so many old friend here! Plan to get back to all of you either here or in private.

FaithForHealing -- I also often felt fatigued and weak prior to treating, and I can't say treatment changed that. If anything, it brought a whole host of new health issues to deal with both during and after treatment.

That said, it may have saved my life -- or at least spared me the complications of cirrhosis -- as I was no doubt heading in that direction,  being staged between 3 and 4 two years prior to treating.

The fact that I am now stage 0-1 is really unbelievable, just wish that translated into other areas :)

But you know, there are others that have different stories. Some say they felt remarkably better after tx, although that was not the majority as I remember it here -- but who knows if a MH discussion group is an accurate sampling, as some argue. And so much depends on your age, length of treatment, and individual constitution.

All the best luck with your upcoming treatment.

-- Jim
223152 tn?1346981971
How great to hear from you. Many of us have wondered how you were, post tx.  How amazing for your liver to have gone from a possible 3-4 to normal in these years.  There is hope for all of us.   I am back on treatment with a few old friends including OH and many, many new ones.  My liver went from a stage 1-2 after my 2005/6 relapse to a stage 3&4 this summer so it was time to treat again, with the new PIs.  My last treatment was a cakewalk compared to this one – uncontrolled anemia being the issue, and it is rampant with the new triple therapy.

If you are interested, I keep spreadsheets in my pictures following our progress. So far no one has been on triple (which was just approved in May) long enough to be SVR (except for trial participants) but this treatment has definitely improved outcome.

Be well
Frijole (friole back then)
1477908 tn?1349571310
Great news, Jim and appreciate you popping back in for an update. That gives us a lot of hope for the reversal process to happen in many of us - and IMHO, with an SVR and continued healthy lifestyle, things surely lean in that direction.

I was like you, old SOC with enhanced doses and 72 weeks in my case. Compensated cirrhosis complicated my situation, but now almost two years post, I'm feeling better than ever. I still get imaging and labs every 6 months with the advanced liver disease, but things are looking good. Now with the new meds, there's more hope than ever for a new lease on life. Gosh, how far we've come........

Continued health and happiness, Jim........Pam
179856 tn?1333550962
Hey Jim how's Jenna and the scooter?  :)

What great news, absolutely totally stellar - not that any of us that know you would expect any less!  It's great to see you post, many of us wonder what is going on with our old friends from time to time.

Still into Idol?   ;)

Deb
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