HCV Tx success with 1b and cirrohsis???

[MichL58]

Hi All,
   My first time here and I was just wondering if anyone has had successful TX with Genotype 1b, and biopsy results of stage 4, with extensive fatty liver? I'm now 16 weeks into treatment and am feeling pretty down about what I've been hearing about success rate for my situation. My GU said I have a 35-40% chance of clearing. Not very good odds. I'm just so scared and depressed. Have tried an Antidepressant but had a bad reaction and now I'm afraid to try another. Any words of encouragement would be helpful!!

[streamline569]

I found this thread and am happy to hear you cleared in 26 weeks. I was wondering what drug you were on. congratulation on you success. I know this is an old thread and was wondering how you are doing today. Are you still clear of the virus.

[MichL58]

Hi All
  Thanks for all the information. My viral load was 534,000 3 weeks into TX. At 12 weeks I was 31.000. I don't have a pre treatment VL, too many DR's with their hands in the pot. My primary said she had ordered it. They even gave me a result of 5.000.000, but then we find out it was never done. Don't ask me where the number came from. We are going to do another one as soon as my COBRA kicks in. I had to change jobs when my last place found out I was sick and started giving me a real hard time. I have had alot of stressful things happening since I've started TX and I am trying to handle them best way I can. One day at a time. I have Xanax for anxiety, but I don't like to use too much of it. The brain fog is bad enough without adding that. I'm a nurse and that also scares the hell out me. I'm so afraid I will forget to do something at work. I did read some encouraging things posted here so I do feel better about the outcome of treatment. Thanks again everyone.










  

[Kalio1]

Welcome to the forum. Hope your treatment is going well.
I too have cirrhosis. I don't look at treatment from the view that the ONLY success to be had is if I can clear the virus. Of course that is the ideal goal, but the treatment itself can improve and even reverse liver damage, even at our stage, even with cirrhosis. The treatment can suppress the virus, therefore it is not damaging your liver during treatment which is giving your liver a break from the viral asaault. To me it isn't black and white, black being I don't clear the virus and white of course meaning I achieve SVR.
It certainly helps me to know that the tretment itself IS the only way to improve my liver condition at this time. Faty liver can be vastly improved by an excellent nutritional regimen and regular exercise so those are things you can do that also heal your liver. Fatty liver is a reversible condition.

There are treatments and drugs in trials right now that can REVERSE liver scarring,even at te cirrhotic level, so try to focus on solutions. I know the cirrhosis diagnosis is very scary, the day I found out I don't think I took a breath for an hour I was so afraid. I can only deal with fear by gathering information and making a plan otherwise I become paralyzed by my fear so that is what I did and continue to do. I now know I can fight this, I can improve it and it isn't necesarily what I will die from at all.
It is empowering to know that cirrhosis CAN be reversed in the early stages and they even have seen improvement in patients in later stages so please do not despair, and please try to see that the treatment offers you benefit beyond just clearing the virus.
Take care, Mitch, stay positive.

Here's a link on Interferon and reducing fibrosis
http://www.medscape.com/viewarticle/407951_7

here's a few on reversing liver fibrosis treatment options that are being developed
http://www.sciencemag.org/cgi/content/abstract/313/5793/1628
http://www.wellcome.ac.uk/doc_WTX033662.html
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=15633128&dopt=Abstract

[GoofyDad]

I have cirrhosis, and (was) genotype 3a. I was initially given 60% odds, compared to more like 75% for a non-cirrhotic 3a. The dissadvantages we cirrhotics have is a compromised immune system and more difficulty remaining on the drugs at full dose. I cleared early (4 weeks, which is normal for the majority of 3a's). That upgraded my odds, and I was also able to stay on full-dose (with plenty of support drugs). That improved my odds enough that I stopped at 26 weeks, rather than 48 as originally planned. As of 6 mos post, I appear to be SVR.

The meaning behind all this jabber is that I think you do have a great chance, and your early responses to the meds are your best indicator. Did you get 4 and 12 week viral loads?

[Kalio1]

Hope post tx is going well.
Have you considered continued ifn. therapy to reverse liver damage? From what I have read, it is long term use that shows the most improvement.

[tulsatime]

Hi and welcome. I have cirrhosis geno 2 treated for 24 weeks relapsed and now I am on treatment for 54 weeks. Here are some things I found out.
1. You can repair some damage while on treatment.
2. you can decrease the odds of getting liver cancer.
3. some can achieve SVR.
So go for it and don't look back. We have to keep fighting!!
Here is some stuff I saved from studys I have found on cirrhosis.

some evidence suggests that interferon can decrease scarring
and inflammation and improve the health of your liver even if
it does not clear the virus.

Several studies have shown that individuals who achieve a sustained virologic response after treatment with peginterferon and ribavirin will have improved survival and reduced risk of liver cancer. Individuals who were treated with interferon had approximately half the risk of dying or requiring liver transplantation compared with individuals who received no treatment. Likewise, the risk of developing complications from cirrhosis is approximately halved for individuals who receive treatment.  

If you examine patients with cirrhosis who achieve a sustained virologic response after interferon therapy, the risk of developing liver cancer is significantly reduced. Compared with untreated controls where the risk of developing cancer was 38% over long-term follow-up, the risk was reduced to 4% in patients treated with interferon, a highly significant risk reduction.
    

Our results indicate that one or more courses of IFN therapy may delay HCC development and improve survival in patients with compensated HCV-cirrhosis, while seem to have a trivial effect on portal hypertension-related complications.

Hope this helps Keep fighting... Debi

[Kalio1]

Hey how's it going girl? hope treatment is being kind to you. Did you have a 4 week PCR?
Are you still with the doctor ( I remember him as Dr. You're too Pretty to Have Cirrhosis lol) and is he being helpful with your tx? Hope he is learning and listening to you.

[GoofyDad]

We are on the relative forefront of a leading edge medical treatment. Having computer models and 'odds' to guide them is what enables today's researchers to offer the treatments we currently have available, and to develop new. I will take an informed calculation of probability over a 'might work, might not', any day of the week. Being given tangiable odds was what empowered me to lob 26 weeks off my prescribed treatment, against the advice of many here who don't like thinking in calculated probabilities. When it comes to choosing a calculated, methodical, and logical approach over an emotional and uninformed one, I'm going to take the former every time.

But that's just me. Others will handle it in whatever way works best for them. Be well.

[GoofyDad]

I'm gonna watch what's happening to my liver, and the development of new antifibrotic therapies. I don't want anymore INF without a compelling reason. My doc expects improvement to take a long while, but as long as I ain't getting worse, I'm probably getting better. I know they don't mean a whole lot, but I had a seemingly improved U/S last month, which read in part 'no evidence of nodularity' and some other mumbo jumbo about non-remarkable echogenics or something. Same radiologist read my last several, so she was comparing, I think.

Anyway, from where I sit, I don't see a compelling reason to start up inf at this point. Have you seen studies comparing SVR and additional INF against SVR and no INF?

BTW, I'm still struggling to find all my mental faculties and I'd be loathe to beat on this poor half-broke thinker any more if I don't need to.

Take care.

[GoofyDad]

FYI, this is what the liverhead has to say about last U/S (he doesn't buy the assessment of 'normal' liver size):

As for the US, it is notorious for under or overstating size of the liver, but the fact they did not see nodularity or "increased
echogenicity" would be very reassuring for ongoing improvement of the histology.

[GoofyDad]

the odds are often beaten aren't they...

Not to be glib, but of course they are. That's the point. To mathematically express the chance they will be beaten. So the second number (the denominator) says, on average, defines the proportionate number of times the alternate outcome will be realized. So, 4:1 odds are going to be wrong 1 out of 4 times.

Take care.... I'm off for Halloween shopping.....

[tulsatime]

Hey Kalio how are you doing? Yes I am with the same Dr. He has been out of town for the last 3 weeks.So I have only seen 2 times. But both times he was so busy looking at labs he never even ask me how I was doing. He will not do a 4 week PCR. Have to wait for 12 wk. darn it! I see him on monday. I did shot 9 last night. Its has been OK. No too many sides, just mainly fitique. Hope you are doing good. Take care, Debi

[CrazyTrain]

I survived a bout with colon cancer (resection surg) and 27 wks follow-up chemotherapy in 2002.
On 4-16-06 I suffered a variceal bleed episode which was banded and  later determined to be a consequence of liver damage from Hep C Geno 1a. (I'm sure the chemo didnt help liver any either)

Anyhow, I started PegIntron/Reb Tx on 8-4 (even though a contraindication-decompensation), figuring potential benefits outweighed risk. Side effects were horrible (especially the depression). Had to discontinue 7 wks later due to low platelet count.
I've never been a big proponent of alternate treatment meds nor have I been against. But I did start taking the Milk Thistle, Dandelion root, Selenium, Lipoic Acid and some espensive stuff NatCell TLM and I'm still in disbelief of turnaround, LFT's and CBC now back to "normal" and HCV-RNA is Neg (<50).
Dont get me wrong I have no doubt Peg/Reb played a big role in ridding the virus but I cant help but feel the other stuff has helped with LF recovery.

[Mister beagle bailey]

First, I would like to welcome you to the forum.  Like all of us, you will find much support here.
I'm a 2B with no damage so I can't answer your question but there are many here that can answer.

Beagle

[GoofyDad]

Digging out the old el machino that hasn't seen light for 10 years. Never used it myself. We'll see what happens.

[Kalio1]

I hear you. The brain fog problem gets in my way big time. I'm a designer and the totality of what it does to me is a bit depressing.

I wish it was that easy and there was a specific study(ies) I could give you but mostly what I find is that those studies are widely encouraged but to date unrealized. Most of my information has been culled from many various studies on maint. interferon in a variety of cirrhotic patients with different causes of their cirrhosis. My goal is to bring  my liver back to a much more managable stage so even if I SVR I will continue to focus on reversing damage. My doctor strongly encourages maint. due to his clinical experience of seeing severly scarred and even cirrotic patients move back to much less critical stages so that and a lot of reading I have done makes me interested. I can well understand making the decision to say away from drug therapies too. I should be more organized and keep all the info. in one place but Im quite a scatterbrain. In a perfect world I would have all the various articles I have goten info from in one place and pass them on to you. Over and over I read that they see substantial improvement histologically in a substantial number of patients. Nonresponder studies and studies on patients who had heemochromatosis if memory serves were good areas where I found info.about it. I promise to keep better track of the info.
The quote below comes from this article:
http://janis7hepc.com/cirrhosis16.htm#Start
If you read towards the bottom there is some discussion regarding benefits of maint. interferon and fibrotic reversal. SVR alone does greatly benefit us, but it appears so does maint. ifn. MKAndrew is a great example of the kind of improvement that can occur even if you can not achieve SVR. With SVR, it seems to me there are additional histological benefits that can be realized from maint. therapy.

here's the quote: notice they again suggest additional studies are warranted. I guess I am not willing to wait them out and put off my decision until studies are completed because I can use that time to improve my liver based on what current evidence indicates rather than waiting for definitive proof from studies yet to be initiated.

"In their discussion, the authors again suggest that other considerations besides biochemical and virologic normalization should be considered, especially in patients with advanced fibrosis on initial biopsy. Maintenance therapy was suggested as an option to be validated in prospective trials."

[jmjm530]

Mainteance therapy is still in the "controversial" catergory according to a couple of liverheads I consulted as recent as six months ago. One of which is involved with the Halt-C trials, which among other things is trying to determine how useful maintance is.
While indeed it appears mainteance can halt or possibly regress Fibrosis in some cases, the durability of the stoppage or reversal is questionable.

SVR on the other hand suggests a more reliable and durable path toward fibrosis regression in many but not all patients. I've never heard of mainteance being used immediately after SVR, or after SVR for that matter. On a hypothetical basis I suppose it might be tried for someone with fibrosis that for some reason continued to progress after SVR. In most cases mainteance is used for those with advanced fibrosis who do not respond to combo treatment, i.e. do not make SVR.

That said, one of our members, Mike Simon, was put on a mainteance dose after SVR, but his is a more complex case and the call was by a transplant specialist who suspected what I believe was hidden viremia in liver tissue, but not to regress fibrosis per say. I'm sure Mike will correct me on this, but again, his appears to be a special case.

-- Jim

[jmjm530]

Forgot to flag Mike in above post, so thought I'd give him the courtesy here since I referred to his treatment above. So if you're reading today, Mike, hope things are progressing smoothly.

-- Jim

[jmjm530]

Sorry guy, realized I completely ignored your question :)

I was a 1b and treated for 54 weeks. Reached SVR around 7 months ago. My biopsy stage was probably somewhere between 2 and 3 -- hard to tell because acutally biopsy was taken 3 years prior to treatment and got three different readings -- by three different pathologists -- on those slides. This does not appear to be uncommon.

Both stage 4 and fatty liver are negative pre-treatment predictive factors of SVR. But that said, once you actually start treatment, to a certain extent how fast your viral load drops trumps the pre-tx indicators. In my case, my age (59) and my stage (let's call it stage 3) were considered negative pre-tx indicators at least by my treating doctor (some doctors only consider stage 4 a negative). However, I had an RVR at week 4 and was non-detectivle via sensitive TMA at week 6. This data convinced three of the doctors I consulted that I would have an excellent (maybe 80%) chance of SVR. Two suggested I treat for 48 weeks, one suggested 54.

In your case the question is when did you have viral load tests and what were the results. Based on this information, plus your pre-treament factors a good liver specialist (hepatologist) should be able to give you odds on SVR but equally important he or she will be able to tailor a treatment strategy that will maximize your odds. It might be extended treatment, it might not. Again, all depends on your viral response to treatment, how compliant you've been with the treatment drugs and other factors they will look at.

Some of us are comfortable with only one opinion -- our tretment doctor -- and some of us (usually the harder to treat cases) often seek out one or two alternate opinions.

All the best however you proceed, just try not to be depressed. Because while I agree with Goofy that the statistical models are useful, Rev also has a point that on an indivdual basis things often turn out different. Plus, again, a good liver specialist can "play" with those odds by tweaking your treatment.

Be well.

-- Jim

[jmjm530]

Hey Scott,

As always you make good points. Durability of SVR has been demonstrated, but as you suggest the studies are only 10 years out at this point. Same I suppose with fibrosis regression and SVR. So, yes, "durability" is finite, not infinite, although my hunch is that ten years is enough data to suggest durability of SVR will continue, but just my hunch.

I was just trying to point out that mainteance is even a much newer and less studied concept, with data still being churned in the Halt C trials.

So I guess we're comparing what you might call non-conclusive data with what I might call very non-conclusive data :)

It is great that both you and Miles had Fibrosis regression to this point, and hopefully this whole discussion of durability (both with mainteance and SVR) will become academic if and when the new drugs come out of trial and whack the virus for good.

Be well.

-- Jim

[jmjm530]

Since you were virus positive at week 12, you might discuss with your doctor extending treatment beyond the normal 48 weeks for better treatment outcome. The Berg study shows better results with 72-weeks in the sub-group of patients were were virus positive at week 12 and virus negative at week 24. Of course, you should have a week 24 viral load test as well. If you're not negative by week 24, the treatment approach should be re-evaluated.
Berg study here: http://tinyurl.com/vyqjj


Be well,

-- Jim

[Mimi4141]

My husband is HEP C 1B and stage 4 cirrhosis.  Please keep positive!!!! Some advice I can offer is as followed:


1.  Keep a positive attitude
2.  IF you are not on treatment discuss your treatment option with your doctor.
3.  If you smoke and drink STOP NOW
4.  Eat a well balanced diet and cut down on your protein
5.  Come to this web site often and ask questions and seek support
6.  Never give up hope, there are always new treatment options coming up every few years

I wish you luck!

Airborne's wife

[Kalio1]

Hi Mimi, hope you and Airborne are doing well.
Regarding protein, it is important what kind of protein you eat.
Each person should check with their doctor regarding this issue because your condition is important in determining what your protein intake should be. Some people need to increase "good" proteins, others might need to decrease overall protein intake depending. Reduction of red meat is a good idea for any cirrhotic. In my case, I had to increase protein. Others might need to reduce. You might be able to get your doctor to give you a figure in grams that you can go by. Mine did and it helps me make sure I am getting enough daily. Some, it might help to limit their daily intake to know the amount in grams.

Here is an excerpt from protein intake info. I was given from my doctor for cirrhotic patients.

"You will continue to need adequate, but not excessive protein in your diet. Protein is needed for repair and maintenance of blood and body tissues, including liver tissue. Persons with cirrhosis tend to better tolerate the protein from dairy and plant sources than from meat sources, and therefore may benefit from a more vegetarian type diet. Daily protein needs in grams will vary according to your nutritional state. Your doctor can give you more specific guidelines on this according to your body weight and the status of your disease."

[MichL58]

Does anyone know of any herbal antidepressants available that are liver safe? I would like to try something.