My husband is 66. Took Hep C treatment for only 5 weeks with Stage 4 ESLD.
Very hard on him but for him so worth it (though we didn't think so at the time). Even if the virus comes back at least it wasn't causing liver cancer during the last 8 months and he now has a new liver.
My husband's doctor put him on the triple treatment with Incivek incase he wasn't able to complete treatment. It was a smart move because Incivek is started from Day 1. By fourth week he was <43. (Started out with 2,450,000 VL).
We wish you the best in making your decision.
The doctor that recommends doing HCV therapy for someone who has cirrhosis is to be commended IMO. Many people(some here) have eradicated the virus with the new medication now available even with severe liver damage.
To try to halt serious liver injury to stave off ESLD or poosibly HCC is always prudent..
Yes, it is definitely worth it to treat whenever there are treatment options. If you do nothing, your Cirrhosis will continue to progress as long as you have Hep C. There is no clear cut idea of how slowly or rapidly it will progress, but there is a very strong likelihood that over the next 6-10 years it will progress. If you don't treat, it's possible that you might go on another 10 years with no symptoms, but your liver will be progressing in damage. If you don't treat, it is also possible that your liver damage could progress more quickly as you get older, even to the point that you might become very ill and/or have too much damage to be able to treat. It is a gamble to wait, and for anyone with Cirrhosis, I strongly recommend do not wait. Treat now if you have a treatment option, and it sounds like you do. I am sure that your 7 year old would like for you to be Hep C free and have a functioning liver when he/she graduates from high school in 10-11 years!
Hopefully there is another parent to help you care for your child.
As someone who almost died from hep C caused cirrhosis, I'll tell you what my grown daughter told me about being my living donor for my transplant~" I'd rather go through this surgery and take my chances, than be attending your funeral."
And without a transplant, I wouldn't be here tryping.
You say that you have "cirrhosis stage 3". Actually cirrhosis is stage 4 so there is some type of misunderstanding in your statement. Perhaps you can post the exact words in your biopsy report or ask your doctor whether you are stage 3 or stage 4? Only stage 4 is cirrhosis. Stage 3 is called "bridging fibrosis".
The fibrosis score is also assigned a number from 0-4:
0 = no scarring
1 = minimal scarring
2 = scarring has occurred and is inside the areas of
the liver including blood vessels
3 = bridging fibrosis (the fibrosis is spreading and
connecting to other areas that contain fibrosis)
4 = cirrhosis or advanced scarring of the liver
Either way, you should seriously think about treatment your hepatitis C now. If you let your liver disease progress further without treating it, the chances of successful treatment get less as your liver becomes more damaged.
When should a person treat their hepatitis C?
Figuring out if you should begin treatment for hepatitis C and determining when you should start it are complicated issues. Because HCV treatment can cause side effects and there is no 100% gaurtentee the treatment will work. But luckily treatment has improve to the point way the odds are the that treatment will work.
As a rule of thumb, the American Academy for the Study of Liver Diseases (AASLD) recommends that treatment be started before cirrhosis occurs.
If these criteria are met, a patient should be offered treatment, regardless of the presence or absence of symptoms, the route of HCV infection, the genotype of HCV, or the HCV viral load.
Please get a referral to see a gastroenterologist if you are not seeing one and discuss the advantages and risk of treating or not treating. Your liver disease is advanced. While you may feel fine, feeling fine is no indication of how damaged your liver really is. The liver will compensate for the damage it has sustained until the liver can no longer maintain itself. You do not want to let your liver disease progress to the point when you are ill as your options for survival at the point will be very limited.
Hector ,would you please.recall what is approx.SVR for us who were detectable at week 4 but undetectable at week 12.I know I go for 48 wksTx.My last doctor was giving me approx 51% chance of SVR but I thought it was higher than that per research. I am 1b relapser Tx #3 Wishing you the best! Naya
i have been dignosed with hepC in 2003 now days my liver deseas has developed into cirrosis. i resently went int surgery to remove my gall blader, it was difucult times for me but forutnally i feel a lot better. so my question is as follow. do i have the option to seek for hepC treatment? eventough my descompesated cirrosis. i think am an avid expert in the subject, however i there is a lot to learn sitill that is why joinig this forum. in my journey with cirrosis assitis, fluid in lungs and abdomen and leges has developed. nevertheless there is timimes i still concern about if ever going to gaing back at least some of the life and health i had en the past.
“Is biopsy the only way to determine if you have a healthy liver?”
In the US liver biopsy is still “the gold standard for assessing the stage of liver disease.
“Is it dangerous?”
All procedures have some risk but the risk of any complications is low.
“Can't the doctors tell from your blood test?”
Can a doctor tell the stage of a person’s liver disease from a blood test? No.
The liver biopsy is thought to be the best way to find out how damaged the liver has become from diseases such as hepatitis C (HCV).
Liver biopsies are important for many reasons:
• To rule out any other liver diseases that a patient may have
• To stage and grade – find out how much the disease has damaged the liver
• To help make decisions about the best treatment
• To reassure both the patient and the doctor
• To provide a starting point to compare with future biopsies
This allows the doctor to see if the hepatitis C virus is doing more damage or if treatment is needed.
The most common side effectof the biopsy is pain – only about one out of five people who have a biopsy have mild to moderate pain during and after the procedure. Few people have severe pain. There is also a small risk of bleeding. Problems after the biopsy has been performed are another area of concern. These are not usually common.Only about 1% (1 out of 100
people) have problems after the biopsy is done.
A liver biopsy is usually done in a hospital as an out-patient procedure – it does not usually require a hospital stay. The most common type of biopsy is done through the skin (percutaneous). Ultrasounds (using sound waves to make an image of the liver) are sometimes performed before or during the biopsy to figure out where the biopsy needle should be placed. Some people want to have a medication to calm them before the procedure to make the procedure more comfortable. Keep in mind that the patient must be awake during the procedure. This is done to avoid possible problems. There are three different types of needles used in a biopsy (suction needle, cutting needle and spring-loaded). The patient is given a shot to numb the area (similar to novacaine from the dentist) where the needle will be inserted. The biopsy itself takes very little time to do – usually only a couple of seconds. The size of the sample of liver removed is a very, very tiny piece of the liver about one to one-and-a-half inches long.
I am sorry to hear you have decompensated cirrhosis. Commonly known as End-Stage Liver Disease.
Hepatitis C treatment is not advised for persons with decompensated cirrhosis. Your liver is starting to fail and hepatitis C treatment can cause further liver injury or complete failure in which case you would need a transplant very quickly in order to survive. The risk of further liver damage by the treatment outweighs the benefit at this point.
As I assume you have been told by your hepatologist, your focus should be on managing the life-threatening complications of cirrhosis with drugs, diet and lifestyle for as long as possible until you are able to get a life-saving transplant. Only a transplant will save your life and bring back the quality of life that you once had. Unfortunately for patients with End-Stage Liver Disease this is the only option in order to continue living. I am suffering with liver failure myself as well as liver cancer. I plan on having a transplant in the near future as all other options are gone at this point of my illness.
Of course you should talk with your hepatologist about hepatitis C treatment as we are all different and there are exceptions to every rule. I am only going by the data you have provided. Your hepatologist knows that complete status of your health and liver disease so they are always the best source of information.
Are you list for a transplant?
What is your MELD score?
Have you every had bleeding varies or encephalopathy (mental changes caused by your liver disease?
Hank in there. It takes a lot of persistence and inner will power to go through the ups and downs of this disease but it is doable.
I am genotype 1b taking now triple tx with Incivek ,Pegasys,Ribavarin. Week 4 VL detected <25,week 12VL undetected.Last time I had my biopsy was 7 years ago s2/f1-2,now before this tx my doctor said no biopsy and did MRCP and I had US every 6 months.MRCPand US says Liver grossly un.remarcableNow I went to new doctor he also said they do not recommend biopsy here in Florida which I will find out why. I give this new MD some time and see maybe I need to drive to north to Jacksonville or SHANDs where they know how to do this whole thing correctly.I did treated before with pegintron and ribavirin responded fast and stayed UNDfor 3 months post tx but at 6 months I relapsed that was 7 years ago .Gosh Hector I hope you getting some sleep ,stay well pls we need you.!Thanks
I can so relate to your personal situation. My husband had a hell of a time for the 18 months following his diagnosis of Stage 4 Cirrhosis (ESLD). He almost died twice - once from kidney failure as a result of an antibiotic (neomycin) given to him to control his hepatic encephalopathy and then again just this past March from a viral infection followed by a mrsa infection he got while in the hospital. But the man has unbelievable strength and a desire to live and he beat death both times.
His hepatologist decided to take a chance last fall despite his advanced liver disease to start him on the triple treatment for Hep C.
My husband was made aware of the risks and his response was "let's do it". It was very difficult for him and he wanted to quit after the first week. But when the doctor told him if he quits there is no restarting, somehow he found the strength to keep on going. He lasted 5 weeks and then only quit because he was hospitalized with severe anemia.
His liver disease definitely worsened after the treatment and that's when the worst happened but somehow he made it through (I l believe it was with God's help). He was blessed with a liver transplant a month ago and he is doing absolutely great.
Hector gave you very sound advice. This is something you need to discuss with your hepatologist. Only he/she knows the status of your liver
and whether or not you will be able to survive such a difficult treatment.
I think what it comes down to is what you are willing to risk in order to possibly get to a better outcome. It's definitely not a easy decision.
I will keep positive thoughts for you and wish you the best.
My husband's doctors didn't recommend biopsy either due to risk of bleeding. Besides the ultrasounds and cat scans they did, It was obvious what the state of his liver was because of his other symptoms - esophageal varices which were banded, and the awful hepatic encephalopathy. Absent these other symptoms, I don't see how they can tell how severely damaged the liver is without a biopsy.
I want to add that I think the decision to go forward with treatment despite his ESLD diagnosis was because otherwise he was in good health - no heart disease, no diabetes, never smoked... I really believe that helped him greatly to make it through. After almost going into kidney failure, his kidneys rebounded to normal range. I am sure that had to be because of his good health otherwise.
It is my sincere hope that his story will help some of you struggling with this terrible virus.
I have read different percentage rates for those of who did not attain Undetectable status at 4 weeks (eRVR) but obtained Undetectable status by week 12. These stats are for treatment naive and previous Relapsers, not previous partial or null responders.
Here is the SVR percentage rate I usually go by (even though I have read in some places the SVR is slightly lower for those of us without eRVR). (Note the last sentence.)
From Clinical Care Options:
"Among patients who achieved an eRVR and received 24 total weeks of therapy, the SVR rate was 89%, confirming that this strategy results in a very high SVR rate (Figure 11). The robustness of response-guided therapy was confirmed by the ILLUMINATE trial, in which treatment-naive patients with genotype 1 HCV who achieved eRVR after 12 weeks of telaprevir were randomized to receive either 12 weeks or 36 weeks of pegIFN/RBV, for a total therapy duration of 24 or 48 weeks, respectively (Capsule Summary). Among patients with eRVR, 92% achieved SVR with 24 total weeks of therapy vs 88% with 48 total weeks of therapy. Patients who did not achieve eRVR all continued pegIFN/RBV through Week 48, and 64% attained SVR (Figure 12). "
This article has several pages to it. It is very informative and well worth reading the entire article.
While I have read some other stats that are slightly lower, I still generally go with the 64% (knowing that it could be 62% or even slightly lower). If they had 64% in the trial, then I figure my chance has to be that good too.
Your VL was very low, 25 at week 4. That is promising. And you were UND at week 12. Just hang in there, don't stress too much on the numbers (it makes a person fret, LOL), and soon you will be finished with treatment. Keep in mind that 64% of those who did not have an eRVR (us) still attained SVR. Statistically there is a better chance of being among that 64%who attained SVR than of being among the 36% who did not attain SVR.
That is true pooh I will stay optimistic.I just wish I had more helpfull doctor at that difficult time/no help with nasea and vomiting ,no help with anemia and I blame myself that I was not enough informed about this tx.Pooh did you also have HCV RNA done at 8 weeks and how often after 12 weeks youwill have it checked again.?Stay well !Thank you!
If a trasplant is possible for me what is the life span after the transplant? iam strong belever that at one point in time god is going to recall what is his to his kindom. i see this illnes with just the way it is, somthing that i did not asked for it but it is my now days. i love life, helathy life style, however is god have another way for me i will deal with it full of dignity. i not afraid to take my last breath, i am just not ready to suffer and wait for it. my wife is a great support and with out her help probbly i will be with god by now. however she is againt of my seeing the rality of my illness, she wants a miracle for me where the latter are extremly rare. i have a mixed thoughts on liver transplant because maybe a transplnat will be of more opportunity to a person with age and willing to make the difference in the world, just like i did. however be what god wants it to be and end up where he feel it should end. finally i have been seeing doctors in MEXICO through a fundation. i began seeing doctore in the USA last week. i feel there is not much a hepatologist can lecture about my situation since i am the one with helath issue. one thing is for sure i want to live a decent live style and my goal is to stay alive with a having a great nutrition progam. before my gall blader proccedure i was feeling fearly well. i was about 98% vegetarian. hoever it is kind of dificult for me to re take my nutrition program after the proccedurew, you know because low blood cout, anemia and all the good sttuff part of this curel liver illness.
Miracles happen every day. My husband is alive today and healthy once again because of a miracle. His sister had a form of leukemia and because of a miracle she too is alive and in remission. Modern medicine provides the means for these miracles. The key is to be informed and overcome your fears of the unknown. Fight for your life. If its meant to be, it will be.
You need to speak to a hepatologist. He/She is the only person who can advise you of your options and if you are a candidate for the new treatments or not.
As I said my husband had Stage 4 Cirrhosis and was able to complete 5 weeks of the triple treatment with Incivek.
His Hep C VL has been <43 ever since (eight months). Doctors have told him that's considered UNDetectable. The reports say "unquantifiable". Who cares what you call it, as long as it doesn't come back.
I'm 3 years post transplant, mikesimon is 12 and I think the longest I've heard of was close to 40 years.
I did tx with ESLD and relapsed, had a tp and did tx again which worked, will see for sure in the Fall.
As Nan points out, some people can indeed beat hep C prior to getting a transplant. In fact this is the modus operandus at some transplant centers these days.
If you need an experienced hepatologist with both hep C and ESLD to help guide you.
Thanks, OH. Just preparing myself in case my husband's virus returns.
Glad to know it was easier with the new liver doing its job. I would think that would be the case. I just t won't be necessary to find out.
Since hcv lives in the blood, the fact that he had his liver transplanted while undetected would make me guess it isn't going to show up.
Und is about und in the blood. It doesn't mean it isn't still in the liver. Since he's got a new liver, he should be in the clear.
Though his test reports have all come back <43, none say "undectable". What they do say is "not quantifiable" meaning that the VL so low they can't quantify the amount of virus in his blood. So I think only time tell what will happen with this virus. The doctor have said (in the past) that he has a greater than 70% chance of it not returning after transplant.
They did a new HCV test last Thursday and we will get the results next week.
Thank you so much for sharing what happened with your second attempt at tx. It has helped me to prepare for that possibility.
A DR can do a ultrasound of your liver to determine if the liver is ok but if there is some indication that their could be something else wrong this might be why he wants to do a biopsy. Do not quote me tho because i am not a dr and i am not sure but my DR did and ultrasound on my liver.Hope this helps in some way.You still need to talk to your dr about your options.
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