stage 3 with hep c

[sbsbsb]

54 and I have 7 year old,doc just took biopsy have cirrouis stage 3 and wants to treat hep c I don't know if worth it

[sherrisummers607]

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 Do not quote me tho because i am not a dr and i am not sure but my DR did and ultrasound on my liver.Hope this helps in some way.You still need to talk to your dr about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.

[nan535]

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.
Nan

[orphanedhawk]

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.

[nan535]

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.

Nan

[orphanedhawk]

Yes, treatment was easier post tp than before. When I did tx the first time, I already had decompensated cirrhosis, which is why I think it was so much harder.

[nan535]

Hi OH
Can you tell me if treatment was any easier after tp than before?

Nan

[orphanedhawk]

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.
Good luck~

[nan535]

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.
https://www.incivek.com/?cid=20175&gclid=CLjVioC2g7ECFQeznQodgTkw8A
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.

[VinceG]

what treatment are you reffefirm about. i have a bad case of cirrosis

[nan535]

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.

God bless...
Nan

[VinceG]

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.



with a genuine respect

Vg

[Naya888]

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!

[pooh55811]

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).[30] 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.

http://www.clinicaloptions.com/Hepatitis/Treatment%20Updates/HCV%20New%20Agents/Module/Practical_Guide/Pages/Page%204.aspx

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.

[nan535]

Thanks for the info, Hector.   Will do...

[HectorSF]

To further discuss issues of cirrhosis it is best to post in the new "Cirrhosis of the Liver Community".

http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390?controller=forums&action=show&id=1390&camp=msc

Thanks!


Cheers!
Hector

[nan535]

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.

Nan

[nan535]

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.
Nan

[Naya888]

I appreciate you answer Thanks that sounds better than I was told by my MD

[can-do-man]

Naya.... Both hrsepwrguy and Pooh are treating with Incivek and in your current situation... They can provide you with the links, from what they have said it shows SVR rates around 62%.

Sbsbsb, yes its very much worth treating, sorry your thread has been hi-jacked..:)...Best to you

[nan535]

Hello Vince
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.

Nan
    

[Naya888]

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

[HectorSF]

Oops! Lets try this again.....at 3:20 am ugh...

You are genotype 1b.

Your are a previous relapser? You completed treatment previously with peg-interferon and ribavirin but the virus came back after you stopped treatment. Correct?

What stage of liver disease do you have 0-4.

What type of treatment are you taking? 2 or 3 drug treatment? What drugs?

Thanks!

Hector

[HectorSF]

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.


Cheers!

Hector

[HectorSF]

What genotype are you?
What is the treatment you are taking?

Thanks.

Hector