What did your Doctor recommend? Is he a hep doctor? Did he suggest treating? I think these are the questions most people will ask. What is your genotype?
If you are not already consulting with a hepatologist (or a gastroenterologist knowledgeable about HCV), that would certainly be the first step. Stage 4 liver disease means that your liver has sustained significant damage -- scarring known as cirrhosis.
Very important in your current condition that you abstain from all alcohol completely.
What is "available" as opposed to what "works" are, unfortunately, not synonymous. Depending on the strain of your hep C (also referred to as genotype), current treatments vary in "cure rates" (some as low as 40%, some as high as 80%). The SOC (standard-of-care) treatment is a combination of Interferon (usually a once-a-week injection) and oral ribavirin (usually twice a day) -- often referred to as similar to 'chemotherapy' by those undergoing treatment. There are also many clinical trials currently under way (of which some members here are participants).
Keep in mind that because you've been diagnosed as stage 4, you should be followed regularly by a specialist familiar with liver disease and Hep C. I do not know if your liver disease is well-compensated (without other symptoms), but regular surveillance in either case is a good rule of thumb.
There is a member of this forum with an abundance of knowledge and if facing the same situation as you. His name is HectorSF and I'm sure he will respond. I don't have the knowledge to share with you but eureka gave you very good information as well.
Wish you the best
Do NOT consume any alcohol (period.)
Do not use any other non-prescribed drugs (including POT).
Do not take aspirin.
Acetaminophen better for pain/fever because aspirin runs increased bleed risk,
You should get check out by hepatologist and get treatment plan set up.
I am 53 and stage 4 too. Have known about the HepC for 11 years. Likely have had it for 36+ years. Working every day and the HepC stuff is a roller coaster but you can be treated and do OK for many years....
If you have not been welcomed here, let me do so.
Amen to the above cautions about alcohol and drugs. Aspirin and the NSAIDS (ibuprophen, naproxen, etc.) are also not good.
If you are in Stage 4, treatment with SOC (Pegasys and Ribavirin) is very dicey. I don't want to alarm you, but I understood that the next step for Stage 4 patients is the transplant list. There have been some studies on the advisability of treating Stage 4 patients while awaiting transplant. The results seem to be that it requires continual monitoring, is of questionable benefit from a SVR standpoint, and is dangerous. The study was stopped before completion because of some deaths.
Transplant may be your best option at some point (near of farther). If nothing else, it buys you time. Prior to transplant, I was at Stage 4. I was also diagnosed with HCC, so treatment was never considered at that point (not sure if it would have been anyway). I am doing fine 1.5 yrs. post transplant and am now treating for the Hep C virus. I think my chances of SVR are good.
HectorSF will be able to give you more detailed information. There may be better options that I am aware.
Best of luck,
Here is an article that I had read concerning this. There may be more recent information that I am not aware of. Good Luck!
Results of Combination Treatment With Pegylated Interferon and Ribavirin in Cirrhotic Patients With Hepatitis C Infection
Barbara Höroldt; Geoffrey Haydon; Katrina O'Donnell; Tracey Dudley; Peter Nightingale; David Mutimer
Abstract and Introduction
Background: The treatment of hepatitis C patients with advanced cirrhotic liver disease remains challenging and data on the outcome of treatment for this patient group is limited.
Results: Between September 2000 and August 2004, 61 cirrhotic patients started treatment with pegylated interferon and ribavirin (42 male, age range 29–69 years, 26 Asian). Forty-three (70%) patients were serum hepatitis C virus (HCV) RNA negative at the end of treatment and 24 (39%) achieved a sustained virological response (SVR). SVR was achieved for 35% (6/17) of patients with genotype 1, and for 39% (16/41) with genotype 3. Caucasians with genotype 3 demonstrated a higher cure rate (SVR 10/18=56%) than Asians (SVR 6/24=25%). Failure to achieve SVR was associated with lower platelet count, neutrophil count and albumin at baseline. Twenty patients suffered clinical or laboratory decompensation, five patients required hospitalization, and two patients died. Patients who experienced hepatic decompensation were older and had baseline characteristics associated with more advanced liver disease.
Conclusion: The treatment of patients with advanced HCV is challenging, although many treated patients achieve SVR. Significant toxicity is experienced and there is treatment-related mortality. This balance of efficacy and toxicity needs to be considered before commencing treatment.
You can get the rest of this article here: http://www.medscape.com/viewarticle/537740
Hi. Welcome. You are at the right place!
I had a long day at work and hope this is coherent....
What genotype are you?
If you have cirrhosis AND portal hypertension the chance of achieving SVR is about 10% vs the 42% - 47% for genotype 1s without cirrhosis and portal hypertension. (I will check if 10% figure is for genotype 1s only, or for all genotypes if you should be a different genotype).
The good news is the less ill you are, the better chance you have of clearing the virus!!! Stage 4 has a number of different degrees so I am hoping you are still compensated and don't have many symptoms of cirrhosis.
Do you have portal hypertension? Varices? Enlarged spleen? Low platelets?
Treatment for persons with cirrhosis is more difficult than person with less liver fibrosis (Stages 1-3). Treatment itself can cause your cirrhosis to decompensate! There are no hard figures on this. Maybe 1-10% of patients with compensated cirrhosis, depending on the study you read. (For patient with decompensated cirrhosis, treatment is not advised normally as it is too much for the liver to handle). Blood tests for ALT, AST, platelets, bilirubin, creatine, etc. should be taken weekly to monitor status of your liver especially when you first start treatment. Therefore you should be in contact with a liver transplant program before being treatment should you need the backup just in case. Also your doctor may want to be put on antibiotics as you will be more open to infection. Infection and cirrhosis don't mix! Also you should have a scan every 6 months for HCC (liver cancer). We cirrhotics have an increased chance of liver cancer as time goes on. Also your doctor will test your blood for AFP levels, which can sometimes be an indicator of HCC.
These protocols are for cirrhotic patients undergoing PEG/Riba tx at U.C.S.F. One of the leading transplant/liver centers in the country. This is where I have gone for treatment. My doctor is used to working with people like us with stage 4. Many other doctors are not used to working with patients with cirrhosis and are not knowledgeable about our special needs. I hope you have a Hepatologist who normally treats patients with cirrhosis.
Have you had your Hep A and B shots? Pneumonia shot? All of these are important because if you were to get infected with these while having cirrhosis your liver can be overwhelmed.
...Needless to say I have cirrhosis with portal hypertension, enlarged spleen, and varices. So I am speaking from my own experience with treatment and cirrhosis.
All the best to you!!!
If you have any questions about what I have said please feel free to ask myself or others here. We are here to help you in anyway we can.
More details about the information I posted.
Some good news:
* The early you treat the Hep virus the better. (The same with people not having cirrhosis).
* The quicker you lose virus during treatment the better chance you have of clearing the virus. (The same with people not having cirrhosis).
Not all cirrhotics are the same.
The 10% chance clearing the virus data is from the HALT-C study 2006. This study contained patients who were being retreated since they were first treated with the older therapy, standard interferon and ribaviron. Not the current Peginterferon. So these patients probably have a lower chance of clearing the virus than the general population of patients with HCV and for you who hasn't been treated before.
These people all had portal hypertension and platelets below 125k also which has a big impact on their chance of clearing the virus as I mentioned in my 1st post.
I hope that clarifies things a little.
Here is a link to a presentation about treating patients with cirrhosis that my doctor who directs the treatment of HCV at the University of California Liver treatment and transplant center.
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 clearing the virus.
Hello out there! Thanks so much for all you help, replies, questions and well wishes!
To: Debbie 223 ; I have no idea what my genotype is! Dr. wants me to lose weight and will put me on a university study with the new drugs in the fall if I wish. Still I need to be informed about my option. Thank you for your reply!
To: eureka254 ; My gastroenterologist was highly recommended by a local university. He recommended the biopsy that showed I was in stage 4. He is going to monitor me regularly and has told me there are new options in the works.
To: Trinity4 ; THANK YOU! Hector has responded. I’m still trying to take this all it! The options, medical studies, medications and treatment options, not to mention all the medical jargon just is too much to take in all at one time. THANKS FOR YOUR REPLY AND CONCERN!
To: somuchmore2 ; I stopped the drinking and pot long ago. I was warned about TYLENOL but need to get a game plan in. I now will review all medications with my doctors and if they cause damage and I can go without them so be it. Hope you are feeling well! Thanks for the response!
To: IAmTheWalrus ; I was told Hep C was one issue but being at stage 4 puts me in another different situation. I’m still trying to understand my options. I was told the treatment takes one year but new meds are coming out that will add extra chances of curing the Hrp C without it coming back. I was also informed that I am a prime candidate for free studies because I have never been treated before. THANKS FOR YOUR REPLIES!
To; HectorSF ; Thank you! Very informative. No, I have Hep C only. Biopsy showed no cancer but I am Stage 4. I HAVE NEVER BEEN TREATED FOR HEPATITIS!
Please KEEP IN TOUCH! I will reply with more on Friday! Thanks you my man!
A BIG THANK YOU TO ONE AND ALL!
Thanks for the info Brent.
It looks like the study you posted shows some similar results and includes data for all genotypes. The HALT-C study, which was released this year, focused on non-naive genotype 1s non-responders with portal hypertension. All of those factors which lower the odds of obtaining SVR.
I think that mains points for treatment HCV in patients with compensated cirrhosis are:
* Find a good Hepatologist who works with patients with cirrhosis.
* Have the doctor plan on managing cytopenia during therapy with growth factors, etc. (epo, GCSF-antobiotics).
* Monitor VL response to treatment over 12 weeks while monitoring of liver function.
The response to treatment over the irst 12 weeks will be the best indicator of the possibility of clearing the virus (SVR).
Only by doing treatment will Willy or cirrhotic know if tx will work for him.
That is what I did. And although tx didn't work for me at least I tried and know what my options are.
Sorry we threw so much info at you at one time. But it seems you are smart and interested in learning all you can to help you overcoming both the HCV virus and cirrhosis.
First Steps for the newly diagnosed HCV patients
Here is a link to tons of info on cirrhosis and Hep C.
No problem Hector. I like it straight and to the point. I’m not on the floor bawling my brains out feeling sorry for myself. I’ve only told my girlfriend the whole truth. My kids and my mom think things are better than they really are. I don’t think I could handle everyone falling to pieces around me. I don't want my family or friends to feel sorry for me. I have hope and I’m always the lucky one. I’m just fortunate to live in this country at a time when information is nearly instant and so many options are available to me.
We made an appointment for June 3rd with my doctor to go over questions and seek answers and options for my treatment. I’m going to make a list of questions to ask him. As for now I’m going to lose some weight and get fit for the regiment ahead of me.
Again thank you!
Hi Willy, Welcome to the forums. There is a lot that is going to happen in your future and i would like to stress that you should tell everyone in the family. They need to know and trying to keep it a secret will only add to the stress. The shock telling will only be one time but to hold it inside will be a daily burden on you. Please just go ahead and tell them they will want to help you.. I went through 2 treatments and i am a non-respoder you will do much better with them on your side. And it is only stage 4 so you have ssome options yet.... Take Care Kirk
That answers the biopsy question I was going to ask. I wanted to find out how
soon a newbie should get that after the news...I also didn't realize that one could
be stage 4 and not ever have shown symptoms or otherwise before it got that far.
THAT is big news as well. If you don't mind my asking, did you find out by
accident, or did you have symptoms? I still drink (did) not as much as the 70's
and 80's, but mainly stopped because I take rx pain meds with codeine/tylenol
mostly on for past 6 years extreme back pain. A symptom my mother had when
her enzymes went up and she had pancreas cancer. Thank God the hospital where
they ordered the liver ultrasound also did pancreas, but that's not back yet.
Thanks ALL WHO POSTED for Will because it put so much information in one place
for a new message boarder with a slooow computer.
If you all don't mind me asking this, are the treatment drugs expensive?? I don't have
pharmacy plan, just docs. This is a concern of mine when and if it comes to treatment.
Too early, but don't want to faint when I go to buy something!! And might be some
good info for you wilko....good luck, I'll be pulling for you. Also, my boyfriend passed
away recently, but we dosed him with a special pen-type instrument that just dialed
to the dose... Never seen anything like it, but damn handy if you have to dose yourself
Best to all.
Forgot to say friend had kidney cancer, with no HCV.
And to say, is that how you guys dose yourselves??
My meds (Roche Pegasys and Copegus) were about $4,000 per month from Walgreens here in SF.
You might want to try to get your meds for free from Roche.
The Partnership for Prescription Assistance was formed
because many Americans do not know that they may qualify
for free or low-cost medication. A centralized location makes
it easier for patients to locate assistance programs. The goal
or mission of the Partnership for Prescription Assistance is to
bring about more awareness of the patient assistance programs
and to help put people in touch with these programs.
To find out if you qualify for an assistance program go to the
Partnership for Prescription Assistance Web Site https://www.pparx.org or call 1-***-***-****(toll free) for more information
Oh, yeah, I forgot all about them. The number got doinked I guess, but it's
easy to find. I would qualify for at least a discount I think. That's a lot of
money. One mess of a health crisis in this country with HCV only going up,
going to cost a pretty penny. Gotta invest in medicine companies or something,
make money, then give it back to them.
Cheers back at ya' buddy.
All the best. Accidentally posted one up above to will, meant it to you...about
the pen shot things. How do you dose?
There is currently another thread floating around here about treatment costs:
Thanks, I'm starting to see more and more after I already ask a question!
Getting the hang of it little by little. This place is better than my old set of
Encyclopedia Britannica....they're good for door stops right along with Law Books!
To: meNtoby ; Yes, I found out kind of by accident. I was tested for levels of a depression drug I once took called Lithium. The results showed ELEVATED LIVER ENZINES and this also kept me from being allowed to donate blood. The doctors said it was most likely elevated from taking the medication, others asked me if I ever had Hepatitis. I told them not to my knowledge. They asked if I had Yellowing of the skin and all the typical HEPATITIS syndromes. My response was NO, No, No. So this has been with me 25, 30 years.
Just recently my girlfriend started working at a satellite of a medical university in Miami. I can fall out of bed and walk to the facility. There I get 80 percent off medical. So I decided to start going instead of driving and hour here or there and waiting and then going to labs, etc. This place had it all in house. They from day one started taking blood, asking question. Eventually the ELEVATED LIVER ENZIMES showed up and the same routine of questions were asked…once again, except this time the when further and further until they said I had HEPATITIS and it was HEPATITIS C.
I was recommended a doctor that works with team of doctors at a gastrointestinal digestive disease facility next to a hospital north of me.
I am 298 lbs at 5’8’. I just recently gained about 30 lbs. The doctor couldn’t believe I was that heavy because he said I don’t look that big. Until recently in the last four months I’ve become sluggish and tiered after returning from an annual convention in California. I always get sick after visiting Southern California. I get a bad cold, etc. I think it is the hectic convention, along with pre planning and of course the dirty old jets! I was always the most energetic person going from town to town, place to place until just recently. But getting back to the gastrointestinal doctor, he told me many people can go through life with HEP C and die of something else. OKAY THIS IS HIS PROFESSIONAL OPINION. I’m not a doctor. I had him set up a COLONOSCOPY and a BIOPSY. I had the colonoscopy at his office and a week later I had at the hospital behind his office the BIOPSY OF THE LIVER. The other day I went in for the result and it was STAGE FOUR CIRROSIS with no cancer. He told me because I never have been treated that I would be a prime candidate for an upcoming study at the UNIVERSITY OF MIAMI. He was also going the same night I got the news to a huge meeting with a drug company that is producing the new drug for Hep C. I am going to see him in ten days with questions about my treatment options.
SO IF ANY OF YOU CAN HELP ME OUT WITH QUESTION, PLEASE DO SO!
This is where I’m at
1) What Genome am I and how does this relate to my treatment options?
2) How much weight should I lose before I begin treatment?
3) Okay, I have HEP C and Stage 4 non cancerous liver disease.
a. Will or can I get cancer easier because of this?
b. If I do the new meds along with the current treatment what are my chances to get rid of the HEP C?
4) Say I get rid of Hep C with treatment.
5) A) Will my liver function better and could I live a somewhat regular life?
6) B) If I have to someday get a transplant, will my transplanted liver get HEP C?
OKAY, THESE ARE JUST WHAT I HAVE BEEN ABLE TO COME UP WITH WITH THE ADDED KNOWLEDGE I GOT FROM READING ON THIS SITE FOR THE LAST TWO DAYS.
WHAT AM I MISSING?
Again Thank you to MeNtoby and all that have responded!
Hello! Well my mom is going to be 88 soon. She gets up every morning and goes shopping with a maid that drives here. She has macular degeneration and can't see well. Still she has more energy than most teenagers.
I just can't burden her with this news. I want her to enjoy the last few minutes and seconds she has on this planet. As for my kids I will eventually tell them but I don't want to burden them. Yes, I as a son and father would want to know if my mom or sons had an issue but that's me. Again thank you-Willy
1) The HCV genotype will be determined by blood test; if you’ve already had a biopsy, the doctor most likely has already ordered a genotype test. Ask him for the results, and consider starting a file to keep all your records in.
2) Optimally, you should achieve and maintain a healthy body weight consistent with guidelines provided by the American Heart Association or the American Diabetes Association (BMI <25). There is a growing body of evidence that obesity, as well as insulin resistance reduce HCV treatment response.
a) Yes, a diagnosis of cirrhosis does put you at in increased risk for HCC (Hepatocellular Carcinoma), or primary liver cancer. The rate of increase is about 5%, however.
b) Treatment response is dependent on many factors, the primary one is Genotype. Statistically, Genotype 1 patients are successful about 45% of the time, genotype 2 approx. 80%, and genotype 3 70%.
4) If you “get rid” of the virus with treatment, you will likely halt any further damage to your liver, assuming that your cirrhosis is currently compensated. Also, assuming that you have no other co-morbidities such as fatty liver, etc. Getting rid of the virus is termed SVR (Sustained Viral Response).
5) The best thing you can do for your health right now is to achieve SVR. Again, depending on the stage of your cirrhosis; you might be able to halt further damage, and in some cases, a modest reversal of damage isn’t unheard of.
6) Unless you achieve SVR prior to transplant, the virus will universally return to the new liver. However, some patients are able to achieve SVR post transplant. We have a member here that has one that, along with others.
“What am I missing”? If you haven’t already, take a look at the following site:
Excellent site to begin your education; just click on any item of interest in the blue box. This will answer most of your immediate questions.
Best of luck to you going forward, and let us know how things proceed—
Pardon me; the incidence of primary liver cancer seems to be about 5% in cirrhotic patients.