stopping treatment

[ferntang]

I have "early cirrhosis" after my liver biopsy, my alt and ast are really high I forget which is which but they are 140 and 70. My platelets are at 72 have been so for over a year. I ask in my 5th week of treatment with Pegasys and ribavirin, been feeling terrible and have not been working for 2 months. Tired of fighting for disability, need to go back to work ate there any complications if I just went my treatment cold turkey?

[ceanothus]

My thoughts exactly, Idyllic. Ferntang, please unload some of your suffering here, you might find something that will help, and at the least you will get the relief that comes from sharing your difficulties with supportive people who really understand what you are dealing with.

[Idyllic]

Oy ~ I agree: there is no real certainty when the new meds might be available. I was reading old posts on here the other day and there are years worth of posts asking about the Protease Inhibitors. There was so much hope and misinformation and they were barely approved by the FDA in May of 2011.

Anyway, I am not entirely certain I follow how far along you are in treatment. You indicate you are in week 5, state you have 4 week PCR coming up yet you have been trying to get disability for two months (??)

It sounds like the side effects might be a bit much. I get how frustrating it can be when you feel so bad and question whether you should even bother to proceed with treatment. I would give it some time. I hope your 4-week labs are encouraging. Maybe that will help motivate you to want to continue.

I am sorry this is happening, As you see from the above posts so many of us know just how you feel. It is more than possible to make it through treatment. You are not struggling alone. I hope you post more often. It is a real strain going through treatment alone. Let us support you and see if that eases up some of the frustration.

Hang in there♫

[Dee1956]

Hi I wanted to come back and check in with you
I hope you will decide to stick it out.  We have all been where you are at some point or another.
While some people are able to work through tx, it is not possible for everyone as everyone reacts to treatment differently

While I worked the first time in 2008 I do not think I could have done it this last time.  The tx was a lot harder this second time around.
There is so much good support here.  If you have any questions, concerns, just need a shoulder there will always be someone around to help you out.  The weekends are a little sparse here as most do their shots on the weekends so they can work during the week however there is normally someone up and on line 24/7
I wish you the very best.  Please let us know how you are doing
Is your doctor helping you with the side effects?  I hope so, help from the doctor can help immensely
Dee

[stormy456]

I have not visited the forum as much as I used to during my husband's treatment, but I wanted to chime in and say that this is such in incredibly supportive community.  Such heartfelt, knowledgeable, and clear advice.  You are all such incredible people!

Ferntang - please listen to all of this amazing advice and encouragement.  You have been given an unimaginable gift.  I know it's challenging, but please find a way to stick this out.  I agree with many of the posters that this is probably the worst period of time, and you will potentially begin to feel better quite soon.  Please hang in there.

[pooh55811]

Treatment is really grueling and long. When I was really sick and got discouraged and thought it would never end, I remembered this little quote:

"When you come to the end of your rope, tie a knot and hang on." ... Franklin D. Roosevelt

It sounds flip, but it kept me going.

It helped me to set and reach little milestones along the way. When I got to 4 weeks I knew I was stuck with 48 weeks of Tx, but every 4 weeks thereafter, I reached and passed a little milestone. Pretty soon I was a quarter finished and then a third finished and then half finished and then I was on the home stretch. Before I knew it, I had only 4 weeks left and 4 weeks after that I was finished.

Come to the forum for support. We do understand.

[FlGuy]

" I have just been so frustrated lately and I know I shouldn't stop treatment because of the long term consequences".  You should repeat that phrase to yourself as you continue to work through treatment when the going gets tough.

[rivll]

Thank you for your post Kristina. It was beautifully expressed and while all these posts were excellent I think yours is most relevant to ferntang's struggle.

[desrt]

The test is aprox. $300+ if your insurance won't cover it.

[desrt]

If you are not undetectable at 4 weeks, I would get the test described in this article:

http://www.gastrojournal.org/article/S0016-5085(10)00841-3/abstract

If I was having diffuculty with tx it would make a huge difference to me if my chances were 87% or 29% when deciding whether to continue with the tx currently available.
Good luck.

[frijole]

There is some excellent advice here and I cannot add much to it.  I can chime in as another early cirrhotic, and agree with ceanothus that this treatment was harder than my first.  In fact, I consider treatment to be a withdrawal from the rest of the world for a year.  However, the withdrawal for one year (perhaps half a year for you) is worth it for the chance to be free of the disease.  I hope you choose to continue.  If you are done with 5, only 19 to go.

If you cannot afford to be off work for any longer that may be an issue.  What is the reason you cannot work?  I could not have worked if I had a physical job, but I ride a desk and made it through 48 weeks with only a couple of sick days.  There is something contradictory about trying to get disability yet wanting to quit a treatment that might help you from being disabled.

[Kristina538]

I was G3A with early cirrhosis - my platelets were a little higher, but starting to plummet and I had Splenomegaly and an enlarged portal vein.    I did tx twice, once way back in 1992 (unsuccessful), and then again in 2008 (successful!).   I had a  biopsy done in the normal fashion, but it was extremely traumatic (unlike the first I'd had done years earlier) and I was kept in hospital for most of the  day; it wasn't until the results came through that my Dr realised I'd advanced further than he expected, and hurried me into treatment.    My choice for doing tx was not hard, as I was find it difficult to keep up with my busy job because of my fluctuating symptoms from the HCV.  Like you, my biopsy was small, but because of the bridging fibrosis seen in it I was told early cirrhosis.

The tx is harder, without a doubt, with more advanced liver disease and I didn't work for 7 months - I felt sick enough prior, and knew I wouldn't be able to work despite the nurse telling me I could work 'part-time'.  I took Vit B6 tablets which may have helped with the riba effects, but it was an exhausting an debilitating process during which time, I couldn't socialise (for longer than 5-10 minutes) and spend a good deal of time bird watching on the deck and counting how many moons to go.   I made myself go to the library once a fortnight for books I found hard to read - and would read the same page 3 times before getting into it.   At my worst, I lit a candle and put it next to photos of people I love or have loved, and tried hard to concentrate on that love and hope that miracles would get me through.

I hobbled from the bedroom to the kitchen to make myself have 3 small meals a day and concentrated on things like sardines/tomatoes/capsicum, or tinned salmon sandwiches, banana smoothies, - I tried making meals with beans instead of harsher meat protein - at the same time trying not to be too fanatical.   I managed to get an overdraft at the bank which helped me get through.    I needed cortisone creams for my bum, olive leaf lip balm for my dry lips, biotene non-alcoholic mouthwash to keep the mouth ulcers at bay, saline drops for dry eyes, sleeping pills to sleep and paracetemol (tylenol?) was my saving grace - even if I couldn't face eating, if I had one 15 minutes prior I could manage to eat.   My hubby would take me for walks.  

It wasn't all bad and had some hysterically memorable moments where I cried laughing at the ridiculous of some of the situations, but most of the time, it was step by precious step, minute by minute.

I was terrified of treating, and told myself at the beginning that I could 'stop anytime I wanted to', which strangely kept me going.   I did know it was my last chance of stopping myself heading towards a transplant (if I was lucky).    I know exactly where you are.  The good news is that if the tx is so bad, then it will be working on you and I'm really hopeful that the 4 week PCR gives you good reason to attempt to carry on a little longer....because you can stop at any stage.  

And, I can say it on here - one of my most celebratory things at the end of obtaining SVR was the day I had my first 'normal' bowl motion.

If you're having trouble 'fighting' for disability, try to take out the fight and the frustration - you need all your energy and focus on yourself right now.  I remember ringing for the overdraft - if they'd said 'no' I thought I'd have to stop tx and go back to work - but I probably would have begged family and friends first - it was all very difficult which trying to concentrate on staying on top of the endless symptoms.

I wish you the very very best, and look forward to your PCR.  When mine arrived my doctor was ecstatic and said I'd put my chance of success up from 50/50 to 80/20.   Here's hoping for you too.   You're not alone, but I remember feeling the same, and, this site was my Godsend and got me through where nothing else could have.   Will be thinking of you and sending warm fuzzies and prayers for your decisions along the way and for some good outcomes to give you strength.

[ferntang]

Thank all of you for the concern and the info. The biopsy they did went through my neck because of my platelets being so low and the risk of bleeding, I had also been diagnosed with Splenomegaly and Thrombocytopenia the official results were stage 3 fibrosis vs stage 4, my Dr said based on the findings and taking in to account my other ailments he told me that the samples weren't of the whole liver but it looks like I have early cirrhosis. I am actually doing my 4 week pcr this week and I see my Dr next week.  I have just been so frustrated lately and I know I shouldn't stop treatment because of the long term consequences, I didn't know who else to ask, just felt alone in this situation.thank you all again.

[Dee1956]

Hello, so far all I have read is your post.  I know how hard it is to treat.  I did the same with early cirrhosis diagnosis in 2008.
I finished tx with Incivek, Peg, Riba 6 months ago.  While it was no fun while I was going through it I am thrilled to have been able to finish and am now SVR
Is there anything you can do to hold off on stopping?
5 weeks is about the time that the Riba builds up. This is probably one of the worst time periods as it hits you all at once.   After this period of time, hopefully things should get better.  Is there any short term disability you could take?  Any sick leave, annual leave?  What about FMLA?
I know how hard it is to work and be on treatment.
I also know from another member on here that end stage liver disease is horrible.  Right now, you can treat, get rid of the HCV and go on as your cirrhosis is compensated, at some point it will become de-compensated and you will not be able to treat.  
Is there any way you could try to hold on a little bit longer?

My best to you
D

[ceanothus]

I keep coming back to see if you've posted any replies to our entreaties. Please let us know how you are doing – how you are feeling, and what you've decided to do. I think all of us are genuinely concerned for you. Best wishes!

[rivll]

D7-Resistance issues do not hold true for the class of drugs she wants to hold out for, the 7797 and other oral they use, probably ribavirin..
Ferntag-I think everyone has made an excellent case for you to stick it out. It is hell, but it will get better and you will have the gift of life. There is no turning back once you hit end stage liver disease. It is a real gamble to wait, you are so young and it seems to me your virus is incredibly aggressive.
Having said that, if quitting is a done deal, I appeal to you to push hard to get in on a trial with 7797 and ribavirin or that you will make sure your Dr. will have that option to you when it comes up.

[8nickers8]

One more thing to be said and that is the rebound effect.  When treatment is stopped before completion, the virus often regroups and strengthens so it is harder to treat the next time.  That alone is a very good reason to finish your treatment,

[jules2551]

Just bumping up this thread.  I think we all have commented more than enough on the "snakeoil man"  :)

[coeric]

if i were in your shoes i would try to continue.  i was first diagnosed with cirrhosis 5 years ago.  at the time the president of Vertex said incevik would be on the market by 2009. i thought i would wait for the FDA to approved incevik, but the FDA did not approve incevik until last year. i probably should have at least tried to treat when i was diagnosed with cirrhosis. i just finished treatment with pegasys, ribavirin and incevik. it was hard, but i would not hesitate to do it again.

i know a woman who also has genotype 3a and is 41 years old.  she has end stage cirrhosis.  Because of the cirrhosis she is also experiencing congestive heart failure and kidney failure.  she is not eligible for a liver transplant because she has no health insurance.  she was recently discharged from the hospital and has been sent home to die.
coeric.

[jules2551]

I totally agree with the others in that you really need to weigh your options here.  And you have early "cirrhosis" in which your options become fewer and far in between.  What exactly did your biopsy say?  And also as Cando asked....what was your 4 week PCR? Was it UND or DET?  

I am G2/S3 dx a year ago and my Hepa Dr. said "you better treat sooner than later".  He told me "you don't want to deal with cirrhosis...believe me".  So now I am on Wk 9 with triple therapy.

You are young and have so much to look forward to in life.  This is just a bump in the road of life in which you have to take care of.  Please reconsider before stopping tx.  This is doable, yes we all have our ups and downs, but with the support of every one on this forum we all manage in our own little way.  You can do this and please don't give up!!!!!!!!!!!

Todays a better day

Jules

[Advocate1955]

Hi ferntang,
Please do not stop treatment.  You have already made it this far, and I think things will begin to improve soon.  You are young, but your liver damage is very advanced.  For the most part, Cirrhosis is irreversible damage to your liver, so it is critical that you do everything in your power to prevent further damage to your liver.  As you already know, Cirrhosis is a very serious illness.  If the scarring continues, your liver will begin to lose some of its ability to work correctly, which will lead to complications such as ascites, varices, and hepatic encephalopathy.  If this happens, it is possible that 1) Hep C treatment will be too risky for you and will make you sicker, or 2) Hep C treatment is less likely to work.  It is much more difficult to treat Hep C the more Cirrhosis is present.  If your Cirrhosis progresses to an extent that there is more scar tissue than healthy liver tissue, your liver may begin to fail.  If that happens, you may spend a lot of time in and out of the hospital, very ill, with life threatening complications.  You would very likely either die from liver failure, develop liver cancer, or require a liver transplant to save your life.  At that point, it would very likely be too late to try to treat your Hep C, although many people must treat their Hep C after a liver transplant (to protect the new liver).
As others have said, the progression of liver damage (fibrosis) is not linear.  In general, the progression is slow and over decades.  However, this is not always the case.  I don't know how long you've had Hep C, but you are young, yet you have extensive liver damage.  My husband, who is 59, has had Hep C for 30+ years.  He was diagnosed in 2007 with mild liver damage (f1-f2).  He treated with Interferon and Ribavirin, but it didn't work.  His then gastroenterologist advised him to take a wait and see approach.  There were no other FDA approved treatments at that time.  His Gastro did labs every 6 months, and saw him back in 2010.  Did another liver biopsy and found out that by that time he had progressed to f4-Cirrhosis!  We were shocked to find that he had progressed from f1-f2 to f4 in 3 short years.  It took 27 years to progress to f1-f2, but it only took 3 years to progress to f-4.  Since that time, he has treated two more times, both of which failed.  There are currently no other treatments available for him, and there are currently no trials that he qualifies for, although we are hopeful one will become available soon.
The main point that I want to make is that the progression of liver damage is not linear.  There is no way to predict how quickly or slowly your liver damage will progress from early Cirrhosis to decompensated Cirrhosis or to ESLD (End Stage Liver Disease) or to HCC (liver cancer).    It is in your best interest to continue your treatment now and hope that it works and rids your body of the Hep C virus now while your liver is still compensated.  If you wait until you have more liver damage or your liver becomes decompensated, it is possible that it will be too late to treat your Hep C or harder to treat your Hep C (harder physically on your body as well as less likely to be successful).
You can't afford to wait to treat.  
There are a lot of new all oral medications in trials, but many of them are being tested for Genotype 1s.  You would need to research what new treatment options are coming out for Genotype 3s, as I believe that it will be fewer.  Also, the earliest that I have heard for new medications to become available is 2014, and that is just everyone's best guess.  It could be closer to 2015.  It is too risky for you to wait 2-3 years+ for new medications that may or may not be approved for Genotype 3s.  If you go to the www.clinicaltrials.gov website and google your area Hep C and Genotype 3, it may give you an idea as to what drugs are being studied for Genotype 3.  Again, I don't think there is much there.
We live in Seattle, Washington, near a large university based transplant medical center (the University of Washington) and my husband is Genotype 1a, one of the most common genotypes in the US, and he has not been eligible for any trials in our area since his diagnosis in 2007.
Don't stop your treatment.  Do your research first.  It is a huge risk for you to stop now, one which may affect your life forever.
Advocate1955

[pooh55811]

Here is the link to one of Hector's posts (his response to a 40 year old man with compensated cirrhosis). Hector is extremely knowledgeable about cirrhosis (both compensated and decompensated), liver cancer, liver transplants and many other aspects of Hepatitis C and liver disease. It may be very educational to read his post (keeping in mind some of it is specific to the 40 year old man he is responding to):

http://www.medhelp.org/posts/Hepatitis-C/Cirrhosis-options-for-triple-treatment/show/1796443#post_8272128

[ceanothus]

I would like to try to persuade you to keep hanging in there with treatment. I know the side effects can be awful - I'm also cirrhotic and am nearing the end of my treatment (I've finished 45 weeks and have 3 weeks left). Part of the reason you are feeling awful is because your liver is already pretty damaged. Most of us with cirrhosis are having a harder time with the side effects. I've treated unsuccessfully in the past (I have genotype 1a, which is one of the more difficult ones), and I can unequivocally say the each treatment has been significantly harder, and made me sicker, than the one before, because each time my liver has been more damaged at the outset of treatment. I keep coming back for more because without successful treatment I'm almost certain to face stuff that is much worse than these side effects. Once you have cirrhosis there is no way to predict just how much longer your liver will continue to function. When it no longer can perform all of its essential tasks it is called decompensated and it starts to fail, and then you get diagnosed with ESLD. At that point people can be very sick and many are in and out of hospitals with problems like varices, ascites and hepatic encephalopathy. Many drugs have to be taken to control those problems, and most of them have unpleasant side effects too. As a general rule it is then too late to treat the virus without the meds themselves killing you, so the only cure then is to wait until you are even sicker and then get a liver transplant, which is a huge and life-changing surgery, and there's no guarantee that one will be available to you when you need it. It's just so much better to do everything you can to avoid all of that stuff by getting rid of the virus while there is still time. It's true that new drugs are in the pipeline, but no one can ever predict with certainty when they will be available. Delays happen regularly. Also no one can predict with certainty if you will still be healthy enough to treat when those drugs are available. I've been encouraging people who have stage 0, 1 or 2 fibrosis to consider waiting, but it seems a little risky for people with stage 3 to wait, and stage 4 seems too risky to me for sure.

I'm sorry to paint such a dramatic picture, and it IS true that you might do just fine with waiting for the next generation of drugs, but oh, what a risk. If you haven't yet been exposed to any of the awful pictures I just painted, do a little more research. There is a lot of information both here and at http://hcvadvocate.org/. You might also want to read some of the posts by our forum members who have gone into that territory. HectorSF is the member I always think of first. You can search on his name to find some of his posts.

There are a lot of us here who have had a rough time with side effects, and in some cases we've figured out things that help, so please consider asking for help with the specific problems you are experiencing – we might be able to help, but at the least we are always supportive and will make sure you don't feel alone. Take care of yourself!
 

[can-do-man]

Did your doctor run a 4 week PCR which is standard, if so were you Und? If so that would be a good sign as to how you are responding. Either way your looking at 48 weeks being your cirrhotic. If and when these new meds make it to market just how well people with cirrhosis will respond is anybodys guess. At your young age hep c seems to be attacking your liver faster then what is normal......... Wishing you the best.

[rivll]

Thanks Pooh :)