week 52 and ready to throw in the towel

[m1956]

nov 2005 - jan 2007 4 times my veins burst in my esophogus. the pressure was at 25 at my liver vein with 10 being what is the highest it should be. went on inderol, more inderol, ismn and it was lowered enough to start tx. with pegasus. my virus count was 187,000 to start. it slowly lowered and at week 36 was 43,000 and week 48  47,000. all the side effects were there. not so bad but hell the same. months 4-6 were the worst with mental sides and then slowly cooled out. am also taking L-ornithin-L-aspertat for higher than normal ammonia.  (much nicer than lactalose)  week 48 changed to pegintron.  got quite sick and with quite heavy depression like never before.  seems like the stuff isnt working because of the fibrosis (most likely cirrhosis at this point).  so they want to put me on the list for a transplant,  which i am not going to do. have not yet had a biopsy.  all liver functions are good, which i dont understand why  when indications are of too much damage already done.  any way i cant deal with this tx any more and am about to make the decision to go off.  i have too much work to do and cant afford to not be having a full income which is only around 12,000 a year as is.  the only good thing is that i have been living in vienna, austria for the past 3 1/2 years and have 100% full med coverage and a pension for 60 a month as an artist/musician.. so i feels as i am wasting time continueing the poisen chemo if it's not going to work in the end anyhow,  but i feel like stopping means i am giving up and signing a sooner death warrant, which comes just the same...  any one else out there do longer term treatment and have results? other than mental psychosis, hair loos, tooth loss, weight loss, sick, tired, sick  and want to scream.   laughing is the best thearpy i have found
best

[Marcia2202]

I'm really sorry to hear that you are having such a bad time. I am not on tx, yet, so I cannot possibly know what you are going through. I myself would try everything in my capacity to go through with treatment. Why don't you give it a couple of more weeks, maybe the sides will get better. Are you on any kind of AD's? Maybe that would help with the depression. My thoughts are with you. Marcia

[john1951]

Hi my name is John.
Please don't give up. I have Hepatitis C and Chrriosis of the liver with alot of it's complications (ie) extreme fatigue, weight loss, muscle wasting, weakness, tiredness, sleeplessnis, exhaustion, encephalogaphy, no appitite, skin scaling on my face, no energy, just to name a few. I need a liver transplant. I had to come off of my anti-depressants, anxiety medications and sleeping pills, now I can't sleep, only about 10 hours in 9 days. I take lactulose, it isn't bad, it has a sweet taste. I also take omerprazole for my stomach. I have had 12 varicies banded so far in my esphagous and will have more banded next month. I am now experiencing chest/heart pains and am seeing a cardiologist to have tests done on my heart. So see things aren't so bad yet :) I also have hair loss and everything on my body is shinking :) So far I have lost one tooth, it fell out :) Don't give up Marcia, life is too short, find yourself a good gastroenteroligst and hang in there. I wish you the best. Take Care.
John

[marsfreek]

ah at long last someone that has sides as bad as i did!! man i know right where you are
but as long as the tx is knocking the virus down any it has to be helping not hurting your liver damage.
  On top of that you are in austria ya das ist guden, (my german and spelling are lame even though i am swiss and german) I mean you could be like in milwaukee.
hang in there.                  
                        sam

[Jan12242]

Don't quit!!!!!  It really sucks, but everyone wants to quit.  I surely did!  If I had, I would be in an altogether worse situation!!! Hang in there.  Contact your friends here anytime to help you get through this.  The docs will give you the option to quit with each new side-effect.  I say LIVE!!!!!!  I'm a whiney chic and I did it!!!!!!  You are not alone.

[HectorSF]

Thanks for writing. Hang on there a little longer with treatment so we can figure out what is going on with you and maybe we can be of some help. I think we can.

[Please check out what I am about to say with others on this site and your own doctors. Because what I am saying is at odds with your current treatment and I am no doctor just an educated patient with HCV and cirrhosis. So I don't want you to risk your health without you getting 2 and 3 opinions at least.] Hector

Maybe I should mention this first... I have compensated cirrhosis. So I am speaking from my own personal experience with PEG and Ribavirin, cirrhosis, and my own preparation for the possibility of a liver transplant.

There are a couple of things I don't understand. I hope you will be able to clarify them for me. You say..."my virus count was 187,000 to start. it slowly lowered and at
week 36 was 43,000
week 48  47,000".
Now you are on week 52.

My first and maybe most important question is...
Why did they continue to keep you on treatment after week 12 when your viral load did not drop by 2 logs to 1,870? If your viral load does not drop by at least 2 logs by week 12 you have NO chance of clearing the virus (SVR)!!! Which means no chance of stopping the progression of your liver disease!
Plus you have never become undetectable. So how could you ever achieve SRV???
Do you understand what I am saying? What do you doctors say about this?

"But I feel like stopping means I am giving up and signing a sooner death warrant"
You treatment is not working and will not work I am sorry to say. Treatment did not work for me also. I was a "null responder" like you. The interferon never lowered my viral load by 2 log by week 12. So I had no chance of clearing the virus. I stopped treatment 2 weeks ago in agreement with my doctors after suffering through treatment like you. Your viral load would have to have dropped to 1,870 by week 12 and you would have had to have your viral load become undetectable by week 24 at the latest in order for you to have any chance of clearing the virus!!!
You are suffering these side effects of tx for no benefit! Why are they still treating you?
(Am I repeating myself here?)

For Genotype 1's there are 20% of us do not respond to interferon based therapy. So we are not alone in this. Although sometimes it feels very lonely. And unfortunately there is no alternate treatment/retreatment that has been shown to work for us. I'm sorry to give you this bad news but I also don't want to see you continue to suffer from the side effects of tx with NO chance of stopping the progression of your liver disease.
What does your doctor have to say about this?

You say you have not had a biopsy, but everything indicates you have Stage 4, cirrhosis. Varices, high ammonia, portal hypertension are all signs of cirrhosis. (I have varices, portal hypertension and an enlarged spleen, low platelets, myself). All are signs of cirrhosis and it appears your cirrhosis is decompensating. You have had 4 bleeding episodes of esophageal varices. Bleeding varices can be a life threatening symptom of cirrhosis. This is very serious. Have your doctors told you this? Do you agree?
Are you aware that patients with decompensated cirrhosis are poor candidates to EG/Riba treatment? Even myself with compensated cirrhosis had a small chance of tx working. Cirrhosis itself reduces the changes of SVR by a lot and in some patients treatment can lead to rapid liver failure. Haven't your doctors told you this?
When you say, "all liver functions are good" do you mean ALT, AST? I don't understand. All the symptoms above indicate that your liver is starting to not be able to perform its normal functions.

What can you and I do?
We can hope to hold on until there is new treatment(s) that don't need interferon to kill the virus or we can start to think about a liver transplant. Believe me I could not even read about a transplant before I started treatment. It scared me. Seeing a video of a transplant made me feel sick the first time I saw it.
What happened to me was...as i started treatment it appeared that my liver was starting to fail due to the PEG/Riba treatment. So one of my doctors said to start to read and think about a transplant. I did. A little bit at a time. I didn't want to get overwhelmed. Now I believe if everything else fails I will somehow make it through a transplant if I have to to live. If that is what I have to do to stay alive, even for 5-10 years I will do it somehow.

"so they want to put me on the list for a transplant, which i am not going to do"
Can I ask, why do you seem to be so against about a liver transplant? Even if it is your only chance to live, you don't want to at least think about it some more?

Please let me know if this makes any sense to you.
If you would like more information about anything I have said here I will be happy to send you links to clinical studies and doctors papers that show the latest studies on these issues.

Thank good care and let me know how you are doing.
Hector

[IAmTheWalrus]

Thanks for writing. Your situation sounds very difficult and I am sorry to hear it. I too went to stage 4 cirhossis before my liver functions became abnormal, so I know it can happen. I think you should get the biopsy done.

A liver transplant is certainly not anything like the end of the world. If anything, it is more like the beginning. I am not sure why you are set against that. If you are in end stage liver disease, it could be your only viable option.  There are plenty of people posting here that have had one. I am one of them.

A liver transplant can buy you needed time and a new lease on health before you need to go on TX.

My best wishes and thoughts go out to you. I hope everything works out for the best.

Brent

P.S. I wouldn't have made it past 12 weeks on TX without ADs. Depression is a common serious side effect of TX.

[derbykid]

I hate to be the bad apple in this bunch, but i would NOT give it a couple more weeks. You could be doing yourself a lot of harm. I would have stopped several months ago. Your at one year of tx. and never even went und.

Hector is correct on the two log drop at 12 weeks, and even with that you should be und. at week 24 to go on. I'm sure no doctor this is just what i have read and what my own doctors have told me. Wishing you the best going forward.

[m1956]

yes i am in agreement with hector on this. i am type 3a. my hemoglobin has been consistantly just under 10 for over a year which is not so much fun when one is a saxophone player. my alt, ast have been normal so maybe i'm not yet at stage 4. the ammonia level is not so high, around 160 or so.. dont know why they kept up treatment other to satisfy they're protocal for trying/success. maybe since the load was lowering they felt that the chemicals would somehow force ther'e way through the scarring.  haha. it's hard to think clearly with the treatment and make a rational decision without questioning one's own thoughts.  the physical sides one can deal with but the mental are really another monster that is lurking quite sublty under and can come on and sneak in and take one by suprise if you are not always on your toes

[dranurag]

I feel hector is right. You are a non responder. You should not have continued this tx. Wait for better drugs. Get a biopsy for sure. They say if your cirrhosis is real bad your enzymes come back to normal as there is hardly any normal liver tissue left to produce ALT. Also before this stage there is a reversal of ALT/AST ratio and AST becomes greater than ALT. Also get your serum albumin and prothrombin time because these two if bad show that the sythetic function of liver is failing

[HectorSF]

Hi my friend it is Hector again.

I realize I may miss you today, as I will be at work when it is daytime where you are in Europe. So I've been thinking about what is that best info/studies/summary stating the latest know treatments  and the chances for success for someone in your/my position with cirrhosis and HCV.

I am sending you a link to a video of a lecture given by my doctor to other doctors 2 months ago at the University of California here in San Francisco. Dr. Terrault is one of the leading doctors in the U.S. in the study of hepatitis and liver disease. You can Google her if you want to find out more about her credentials. This lecture contains that latest information on the current treatments for patients with cirrhosis.

http://www.uctv.tv/search-details.asp?showID=14086
"Management of Hepatitis C in the Pre-Transplant Patient with cirrhosis (compensated and decompensated)" (UCTV #14086; 39 minutes; March/6/2008)
Dr. Norah Terrault (Director of HCV at UCSF)
This video program from UCSF is part of an annual update for physicians who care for liver failure/transplant patients. UCSF is a national leader among abdominal organ transplant programs. This video segment covers antiviral therapies for management of Hepatitis C in patients with both compensated cirrhosis and decompensated cirrhosis in the pre-transplant patient. And the chance for reaching SVR.

While some of this information say be quite sobering I believe it is best to know where we truly stand (even through it may be "no bed of roses") so we can make the best choices of the options available to us.

I hope you find this information at least gets you thinking about what options you may want to look at in the future.

Have a good day.
Be well!!!
Hector

[HectorSF]

Just a fast note before I go to work...

Genotype 3a. Thanks.
Great to hear you are a fellow musician. I played for many years myself. I was a bassist.

A few coments if I may...
"dont know why they kept up treatment other to satisfy they're protocal for trying/success."
There is no protocol for treatment beyond week 12 if your VL haven't dropped at least 2 logs. Also your viral load did not become undetectable by week 24. Standard protocol is to stop treatment at these points. (I did). Why because you have NO chance of successful treatment after week 24 if your VL is not undetectable. This is common knowledge as well as the standard medical protocol world-wide for HCV treatment.

"maybe since the load was lowering they felt that the chemicals would somehow force ther'e way through the scarring."
1. There is NO colleration between viral load and liver disease. NONE.
2. The results of the many year HALT-C study which is mentioned in the video I sent you came out this year. It shows that "maintenance therapy" in order to reduce fibrosis DOES NOT WORK. If it did work I would be on the treatment myself right now. If your doctors are not aware of these protocols and studies (which they seem not to be) I would seriously think about looking at other possibilities for health care. I am a layman as are the other people on this forum, but we know about these studies (There are all available online) so I wonder why the people treating you don't? Don't mean to get negative here. I guess it angers me to see that you are not getting treatment based on the most recent data.

ALT and AST levels I don't know off the top of my head but I believe it is not uncommon to have normal values and cirrhosis. I did. A better indicator of cirrhosis is platelet count. How are your platelets? Mine are around 70k when not on treatment. Went down to 26 at week 12 of treatment.

Anyway just wanted to reply to your latest posting.
Play on my friend!!! What type of music do you play?
Take care for now!
Hector

[m1956]

what about the claim that 10-20 % of non-responders to pegasys might respond to the peginteron? also i believe my doctor may have kept me on the treatment for so long as she said it was the only chance to try and rid it from me, and maybe she held out a slim hope that a "miracle" might happen, though she wasn't very hopefull. but thought if there was just a slight chance then to try and go for it. my austrian-german after 3 plus years is not good enough to  deal with non-conversation talk in a short 15 min. meeting once per month and i didn't always concentrate so well as to .....