Re-Biopsy after SVR

[newleaf09]

I just got the results of my post-TX biopsy.  Re-biopsy is not typically recommended but I have plans to move away from good health care and needed verification that I will be safe.  I was biopsied and started TX as a genotype 1 in November 2008.  The '08 biopsy was very bad; grade 3 inflammation, stage 4 fibrosis.  The pathologist called it 'probable or incipient cirrhosis'.  Scared me to death!  I went through a very rough 28 week TX and am still not recovered from it.  My doctor recommended that I wait one full year after the end of TX (June 1).  Here are the new results: Grade 1, Stage 2-3.

I had hoped for 2 stages of regression and then got scared of being overly optimistic and jinxing myself.  The doctor was astounded, I am astounded.  I asked if, since the biopsy was done so soon after TX, he thought I would continue to heal and he did not have an answer because it's so rare for SVR patients to re-biopsy and there's just nothing to compare to.  He thinks more regression is likely.  I also asked him if I could stop worrying about liver cancer and he cautiously said that he thought so, that he thought HCC, the type of liver cancer we HCV patients worry about, was highly associated with both cirrhosis and HCV together and since I had lost both I was probably safe now.  Not for sure, but 'probably' is good enough for me.  

This may be my last post on the forum.  When I get the hard copy of the biopsy report, I'm thinking of adding it to my inch-thick file and burning the whole thing.  It's over.  Happy, happy, happy.

[can-do-man]

My dad was on chemo before he passed away from bladder cancer, trust me diane that does not even compare to what we go thru....... This is like a walk in the park to cancer patients.

[Trinity4]

Cancer Therapy
Biweekly infusions of Oxiliplatin -   That drug makes your hands, feet and throat so sensitive to cold that the pain of handling cold objects is so instantaneous and so severe that you will drop anything you touch.  Then try to drink a glass of cold water and enjoy the sensation of the throat muscles going into very painful spasms.  And between infusions there is the Xeloda to be sure you puke all day every day.

There is the nauseous ALL THE TIME.  Oh yeah, and your hair falls out in big clumps.  I'm not talking thinning hair, I'm talking huge clumps that fall out and leave big bald spots til finally you just shave it all off and get some bandannas or wigs or bad hats or whatever.  Also, the eyebrows and lashes and pubic hair usually go too.
Then there's the diarrhea.  And on top of that add some radiation for a real party.

Those who have done both can assure you that HCV treatment is not in the same universe as chemotherapy would consider themselves lucky if their therapy was only inf and riba.  HCV treatment would be viewed in a whole new light if you ever were in a position to compare it with real chemo.

Trinity

[GSDgirl]

Congrats on your biopsy results

[Trish77]

I would imagine they both have their betters and worses.  I also know someone who died from the complications from her chemo and I think there is always a better or worse story.  Neither are desirable and I wish nobody had to go through either.  And we do what we can with what we have to work with.

[Diane12855]

I don't know. I have read about people being hospitalized and even dying from tx. I would say that sounds pretty bad.

[nygirl7]

Yes from what I've seen and heard from real type chemo patients - man we have it pretty damn easy.  It doesn't seem so bad when it's put into perspective does it?  No walk in the park but - not like having real chemo done either.  Yet we all whine and whine about how ill we were........man we are LUCKY - and in most of our cases its not as if the hcv would have killed us right away.  We would have had a better choice than say a cancer patient.  I will never complain about what I had to go through - there are options that are much much worse and we should be grateful.

[Trinity4]

Correction: Technically IFN is Immunotherapy. Riba is antiviral therapy.

[Trinity4]

Immunosuppressive therapy/antiviral therapy is the proper name but a lot of people like to call it chemo.  Been through both, there's a huge difference.

Trinity

[Diane12855]

Heck! I'd frame the second biopsy report to remind that part of your brain that likes to worry so you can say..."See there?... nothing to worry about any more."

[newleaf09]

Alright already.  I had an ultrasound of abdomen on Friday, including liver.  Will include AFP in with some other bloodwork this fall.  Was only up to 17.5 at highest pre-TX level but it will not kill me to look at it a few more times.

I AM going to burn all of the lab reports, though.  File's an inch thick and weighs a few pounds.  I cannot imagine why I would ever want to look back at it and see how desperately ill I was on chemo.  I did graph it all on a single sheet and probably won't delete the graph for a while, but looking at the file can only make me feel bad. I don't want any of that information.   Maybe I'll keep the 2 biopsy reports.  

[Diane12855]

That didn't apply to me... the liver enzymes indicating inflammation that is. Because of another liver issue, I had to have regular liver panels done since 2002 and they have always been normal until this past January and then they were just a little above normal. Just enough to cause my doctor to have me checked for hepatitis. Two months later the biopsy showed stage 2 grade 2 so unless it could progress that much in 2 months, the inflammation had to be going on while my enzymes were normal.

This is probably why so many people go undiagnosed. Just like in sx, everybody is so different, they can't say any one certain thing points to inflammation or infection for that matter.

[frijole]

new leaf (and bill)
My liver enzymes have always been low -- in the 20s.  It was only after treatment and relapse that they spiked - in the 50s and then as high as the 80s.  That is how I knew that I had relapsed before I had the VL test.  Now they are back in the 20s.  haven't had a viral load test done in a couple of years but I imagine it is about where I was before treating.  I too believe that we can use the liver enzymes as indicators.In me they indicate a low inflammation level.

frijole

[IAmTheWalrus]

Great  news! I am happy for you. Best wishes your way always!

Brent

[Bill1954]

Really cool stuff, Newleaf. I agree with Willing; keep up the watch for any development of HCC. I’m a couple of years out now, and continue to go in for U/S scans and AFP every six months; in fact, I have a follow up mid-week with my hepatologist. I don’t see them backing away from this either; they feel strongly it’s so much better in terms of care and management to spot it early were it to develop.

Other than that, who-effin-ray!

Can you burn those labs in effigy? Maybe touch off some IRS bullsh!t  in it’s honor :o)?

Oh, and I'm glad to hear your doctor values low enzymes. I just had labs done, and my ALT/AST were 18/22 respectfully. Good news, indeed :)

All the best, and thanks for sharing the news,

--Bill

[newleaf09]

nygirl - new biopsy was not 2/3, it's 1/2 with a few features of stage 3.  You've been off TX for years and your liver may be that good or better after more time to heal than me.

frijole - my doctor made a big fuss about low enzymes at end of TX.  When he explained the biopsy he noted that it's all about inflammation.  Inflammation causes the scarring in the first place.  Reduce inflammation (by stopping the assault) and no new scarring will occur; just a matter of breaking down the old collagen scarring after that.  

Portann, I'll fix that.  Royal Star is a good magnolia!

[portann]

In answer to your question, Royal Star!

Congrats, again.

Susan

P.S. Your note and PM functions are disabled.

[frijole]

Stunning news.  I am so glad you posted it.  It furthers all the reports that when you achieve SVR, you can improve your liver.  This is encouragement for all.  So, happy new life.


I had a post treatment (relapse) biopsy and saw no improvement.  Stage 1, Grade 1-2 pre treatment and the same after.  I believe it is only if you are able to stop the inflamation caused by the virus that your liver can improve.

Good luck in your future
frijole

[annieCinMD]

I am sooo glad to hear this! Best to you in whatever you do.
Anne

[Isobella]

Great news!!  I'm so happy for you!!!

I say copy the file and then burn =)

All the best,

Isobella

[willing]

very, very, good news - being able to put all this into past tense really is the goal here isn't it? Thanks for posting the bx update , a  rare data point as you point out, and for everything you've contributed here. You'll be missed!.

There's something to be said for the health benefits of a worry-free life, but I'd recommend continuing the occasional US scans. Occurrence of hcc, with hcv as the primary risk factor but without cirrhosis, is rarer but not nonexistent:

"The average annual risk of HCC in patients with cirrhosis from HCV is 3.2% (13). The annual risk in Japan is approximately 6% to 7% (14). Among patients without cirrhosis, the annual risk increases as the stage of fibrosis increases (F0 or F1 [none or minimal portal fibrosis] = 0; F2 [periportal fibrosis] = 1.5%; F3 [bridging fibrosis] = 5.1%) (15)"

from (free access)
"Hepatocellular carcinoma: management of an increasingly common problem."
http://www.ncbi.nlm.nih.gov/pubmed/18628926

[newleaf09]

Thanks to all for well wishes.  I really posted to let others know that the information floating around about regression of fibrosis is true & I, for one, can verify it.  I'll be carrying the re-biopsy report to all my non-GI doctors who still believe that cirrhosis is irreversible and a death sentence.  I took a lot of encouragement from Dr. Shiffman's HALT-C presentation this year, which said that 10% of cirrhotics can go all the way back to zero damage in 4-5 years after SVR.  Hope I make it.  It's quite an emotional recharge to go from fearing doom to knowing that an essential internal organ is remaking itself all shiney new.  I'm liking it.

[JennyPenny2009]

Hi there. Congrats on the great news. I had a talk with Dr Shiffman about improvement in histology scores when he biopsied my friend who was in the HALT C trials. She was Stage 4, cleared, and had her biopsy 7 years post treatment. She went from a Stage 4 to a Stage 0-1. He told us that the liver continues to improve for quite a number of years. I am very happy for you.

[nygirl7]

That is absolutely fantastic news newleaf I am very happy for you - stage 2/3 means you did great.

I wish you the best of luck in where ever you and go and whatever you do. You've been a tremendous asset on the forum and I am sure everyone wishes you well in life.

[ArthursMom]

Great News!!!  Thanks for sharing it. This is one crazy disease that we (some of us) have! The best to you in the future!