Concerns about continuing treatment with advanced cirrhosis

[Suzo53]

Hi All,

I am new to the forum, and looking to connect with others who have experience undergoing Hep C treatment with advanced cirrhosis.

Our mother has Hep C Genotype 2B with Stage 4 cirrhosis (age 60). She is in her 4th week of Sovaldi (400mg/ morning), Ribovarin (600/morning), and Ribovarin 400 mg at night. She has had all the severe side effects, including stomach burning, "feels like she a been hit with a base ball bat", extreme fatigue and depression, skin burning from "the inside out".

Her doctor has reduced the Ribovarin 600 mg/morning to 400mg. Her viral stats are way down.


Our main concern is her Stage 4 cirrhosis and taking this medication. We want to encourage her to continue, but she fears that it is literally "killing her", and further damaging her liver. She believes a newly onset thyroid condition is caused by the medication, and is extremely fearful that this regiment could cause liver cancer.

With her liver condition, she is facing a liver transplant in the near future. She has a meld score of 11-12 before beginning Hep C treatment, and now has a score of 10.

She questions whether it is worth it to continue with this treatment now if she is facing liver transplantation anyway, and fears being further weakened.

Your insight would be appreciated! We'd like to tease out fear vs. risk at her stage.

Best,

[Tpropane]

I have cirrhosis. My doc says there is a real chance of my liver status improving if I achieve SVR (sustained virology response or in short a cure). The ribaviron is tough. It can add to the fatigue. Her doctor seems on it by reducing her riba. What is the length of treatment recommended? Has she ever been treated before? Does she still drink alcohol or take any other meds? All passes through the liver.
All I can say is I know that a liver transplant may have far more of a chance of success if she beats the hep c first. Major surgery is a hell of a lot more to go through than Solvadi+riba. Call Gilead helpline with questions. Call her doctor. Hang in there. But she needs to be the proactive one, responsible for her own understanding and above all be her own advocate.

 I'm on 24 weeks Harvoni. Exhausted and headache. But not as bad as the treatment with interferon I did in 2011.
Water, water, water. She needs to stay hydrated and try to eat a liver healthy diet.
Ridding herself of the HCV is the best chance her liver has of continuing to get better.
Wishing her the best.
TPropane

[Suzo53]

Thanks Tpropane,


Your reply was very thoughtful and helpful. The length of treatment is 12 weeks. She is a 3rd of the way through! Never been treated before, and she is obstaining from alcohol. She has been prescribed low dosage of Percoset (not sure why she was prescribed this one). We know this is not good for her liver, but she can't function/get up otherwise, as she has severe stomach pain. If you know of a better alternative, we would love to hear so...
She's eating a very healthy diet--fish and veggies, lots of water...

We agree that major surgery is not an easy "alternative" to Sovaldi/Riba.

We're having her call Gilead, and trying to help her empower herself.

What stage cirrhosis are you? I'm not familiar with some of the terminology, re: F4 Cirrhosis.

[Suzo53]

Also, So glad to read that it looks like you have responded well to treatment so far!
We're wishing the best for you as well!

[Lynn K]

Hi Suzo

F4 means fibrosis level 4 which by definition is cirrhosis when you say stage 4 you really mean F4. Cirrhosis is further broken down be compensated or decompensated as well as Child Pugh scores A, B or C and also by MELD.

I was diagnosed with cirrhosis in Jan 2008 but I am considered compensated at MELD 8 Child "A"

I have a small amount of ascities and edema in my lower legs so I take a diuretic Spironolactone for that. I also developed esophageal varicies which I had to have banded both of these symptoms are complications of cirrhosis and portal hypertension.

I am genotype !a so I am treating with Harvoni for 24 weeks plus Ribavirin which is most likely causing most of your mom's side effects.

Curing her hep c now opens the possibility her liver may begin to heal and avoid needing a liver transplant. Also even if she still does need a transplant she will at least not infect the new liver.

As she have advanced liver disease with MELD currently at 10 I hope she is under the care of a hepatologist associated with a liver transplant center they are best equipped to monitor a patient with advanced cirrhosis while treating.

Good luck to you and you mom keep careful watch and stay in close contact with her doctor for and side effects

[Suzo53]

Hi Lynn,

Thank you for the clarification..wasn't sure if there were 4 stages of fibrosis, then 4 stages of cirrhosis or if they were on and the same.

Her virus type is 2B, Meld Score 10, decompensated (not good).

Yes, we know about ascites and edema. The swelling in her ankles went down after beginning treatment. No varicies yet, but that happened with our father.

Yes, the Riba is whats hard.

She is working with the head of transplant at Cleveland Clinic. Our father passed away from Hep C related liver Cancer in 2008 (different stain), so were are trying to be very aggressive about our options and a successful outcome!

Thank you for your insight and best to you for successful treatment!!!

[Lynn K]

Well it sounds like she is getting good care. I guess you may know that to even be eligible for the transplant list she would need to have a MELD 13 to 15 depending on which transplant center and most people are around MELD 30 or extremely ill before they receive a transplant. We also have a greater risk of (HCC) heptocellular carcinoma  due to cirrhosis so I am sure she is monitored for that as well with AFP blood testing and abdominal ultrasound or possibly CAT scan.

here is some info about staging

What are liver fibrosis and steatosis?

Chronic liver diseases affect the liver tissue in various ways: fibrosis and steatosis.



Fibrosis 

Any chronic attack on the liver will cause inflammation, which then leads to the formation of fibrous scar tissue in the liver, creating hepatic fibrosis. This fibrosis is therefore a scarring process that will replace damaged liver cells. The extent of this fibrosis can vary, and it is described in several stages. A normal liver is at a stage between F0 and F1. Stage F2 denotes light fibrosis, and F3 is severe fibrosis. 'Cirrhosis' is defined from stage F4, when scar tissue exists throughout the liver.

Fibrosis therefore disorganises the architecture of the liver both anatomically and functionally. When fibrosis reaches the cirrhosis stage, it is initially completely asymptomatic; this is the compensated cirrhosis stage, i.e. not complicated. It can be discovered fortuitously during scheduled examinations. The cirrhosis then decompensates, and liver complications appear.

-Portal hypertension which is secondary to liver fibrosis; this impedes venous circulation and causes the pressure in the portal vein to rise. It can promote haemorrhaging by bursting oesophageal varicose veins.
-Ascites which is the formation of a liquid effusion in the abdominal cavity, which can become infected.
-Icterus (jaundice).
-Hepatic encephalopathye which corresponds to neurological disorders by the accumulation of toxins that are not broken down by the liver.
-Primitive cancer of the liver, which is a final complication, and can also be called hepatocellular carcinoma.

Fibrosis is reversible if the cause of the disease is treated and if the lesions are not too severe. The liver can then resume a normal structure. The degree of fibrosis therefore constitutes an important prognostic parameter. The extent of the fibrosis is one factor affecting the diagnosis and decisions concerning therapy, and a criterion for tracking the progress of the illness and the effectiveness of therapy..

http://www.myliverexam.com/en/liver-fibrosis-and-steatosis.html

[BubbaT]

@Lynn, thanks for the links and clarification on the staging..

Some things you wish you didn't have to learn!  Lol

But out of necessity we must eh?  Who said ? God is not a genius?

Anyone who can make a liver is alright in my book! 

[sjrene]

Hi Suzo35,
I think that the fatigue is not hurting the liver.  It is your body saying, rest, let the liver do it's job.  The liver does so much and dealing with the Hep C is a big job.  The medications are removing the Hep C and thus, allowing the liver to do some of the 'ordinary' jobs it does, which are still vast and hard.  So long as you are resting, you are giving the liver the energy to do what it needs to do.  Once it takes care of your body, then it will have some extra energy to take care of itself.  It may do that, it may not, but it will be in better shape than it was before and the fatigue will disappear.
Rene

[Debula]

Lynn thanks for the stages
I am still confused about compensated and decompensated.

When fibrosis reaches the cirrhosis stage, it is initially completely asymptomatic;this is the compensated cirrhosis stage, i.e. not complicated

Not sure what asymptomatic means exactly in this case as I am now finding out that I did have many symptoms that were cirrhosis related but I just didn't know it.

The cirrhosis then decompensates, and liver complications appear.

Based on my F4-with some necrosis does this mean I am decompensated? 

Best wishes for your mother Suzo53


Deb

[Lynn K]

Compensated means your liver is still able to compensate for the damage it has received in other words although damaged to the point on being F4 fibrosis cirrhosis the liver is still able to perform its critical functions and essentially the patient will be asymptomatic which means without symptoms.

Asymptomatic = adjective 1. Showing no evidence of disease.

Being F4 means necrosis or tissue death. Our livers are very slowly dying but still able perform their normal functions.

http://www.hepatitis.va.gov/patient/complications/cirrhosis/decompensated.asp

What is decompensated cirrhosis?

Cirrhosis

If you experience any of the serious problems described below, your disease has progressed from compensated cirrhosis to decompensated cirrhosis. You are then at risk of dying from life-threatening complications of liver disease, unless your sick liver can be replaced with a healthy liver (liver transplant).

    Bleeding varices (internal bleeding)
    Ascites (fluid in the belly)
    Encephalopathy (confusion)
    Jaundice (yellowing of eyes and skin)


Another way to judge if you are beginning to become decompensated is by taking your lab results and determining your MELD Score (Model For End-Stage Liver Disease) or your Child Pugh Score. Here is a calculator for both and then definitions. For reference I am Child "A" and Meld 8 and so considered to be compensated. The MELD score is used for liver transplant list ranking most transplant centers do no list patients with lower than 12 or 15 MELD scores

http://www.hepatitisc.uw.edu/go/management-cirrhosis-related-complications/liver-transplantation-referral/calculate-meld-score

Child Pugh formally was used for transplant list placement but has been replaced by the MELD Child "B" and "C" are considered to be decompensated.

http://www.hepatitisc.uw.edu/page/clinical-calculators/ctp

So as far as symptoms of decompensating cirrhosis

The first thing I noticed was pitting edema that is lower leg swelling that if you press with a finger it stays indented for a period of time.

Also I have a small amount of ascities that is fluid in the stomach caused by cirrhosis and portal hypertension. Ascities can get to the point the patient looks pregnant, has difficulty breathing because of the swelling, loss of appetite due to feeling full from the swelling. The fluid can also become infected called Spontaneous bacterial peritonitis (SBP) which can be life threatening.

Mild ascities this is treated with diuretics and salt restriction sever ascities can be drained periodically or a shunt placed surgically bypassing the livers portal vein to reduce portal pressure to reduce the ascities. However a portal shunt can increase the possibility of development or increase severity of Hepatic Encephalopathy (HE).

Another symptom of decompensated cirrhosis is Hepatic Encephalopathy (HE) which I don't have.

http://he123.liverfoundation.org/diagnosis/what-are-the-stages-of-he/



The severity of HE is judged according to your symptoms. The most commonly used staging scale of Hepatic Encephalopathy is called the West Haven Grading System:

    Grade 0: Minimal HE
    This stage is very hard to detect as changes in your memory, concentration and intellectual functioning are so minimal that they may not be outwardly noticeable, even to you. Coordination can be affected and although subtle, may impact your ability to drive a car.If you recently had poorer performance at work or have committed a number of traffic violations while driving, it would be worth bringing this to the attention of your healthcare provider. You may be referred for special testing, called neuropsychiatric testing, to evaluate your thinking abilities by doing a number of specifically designed tasks with a trained examiner. If your test reveals some deficits, your healthcare provider will likely schedule frequent follow-up visits to closely follow your condition. There are currently no medications approved by the FDA to treat minimal HE.

    Grade 1: Mild HE
    You may have a short attention span, notice mood changes like depression or irritability, and have sleep problems.

    Grade 2: Moderate HE
    You may keep forgetting things, have no energy and exhibit inappropriate behavior. Your speech may be slurred and you can have trouble doing mental tasks such as basic math. Your hands might shake and you can have difficulty writing.

    Grade 3: Severe HE
    You may be confused as to where you are or what day it is and be extremely sleepy, but can still be woken up. You may be unable to do basic mental tasks, feel extremely anxious and act strangely.

    Grade 4: Coma
    The last stage of HE is when the person becomes unconscious and slips into a coma.

Another symptom or Advancing cirrhosis is Esophageal varicies or as my doctor told me looks like varicose veins in the esophagus. They can enlarge to the point they are in danger of rupture and a bleed happening with possible throwing up blood or what looks like coffee grounds which is blood from the stomach.

I had grade 3 varicies found on my 3rd upper endoscopy 3 years after I was diagnosed with cirrhosis so I had to undergo 4 upper endoscopies in 4 months time to band the enlarged blood vessels to prevent a possible bleed from occurring.


That is what decompensated cirrhosis looks like and means as a patient which is why cirrhosis is called also End Stage Liver Disease ESLD

I hope this explains compensated cirrhosis vs decompensated cirrhosis and the symptoms of decompensated cirrhosis well enough.

Have you had an upperdoscopy? That was the first thing my doctor had me set up after I was diagnosed with cirrhosis by liver biopsy in Jan 2008

Good luck

[Debula]

Hi Lynn
Thank you so much for your explanation of everything!
We sound like we are in about the same boat
The Dr. wanted me to have a upperdoscopy but I told him I want to wait until we do the Harvoni treatment first.  (I am chicken)  But he made me promise that I will do it for sure!  He wants to do both ends at the same time since I have not had that one either and he said it was the same cleanse for both. (kill 2 birds with one stone)

I do have a bit of edema in my ankles and some swelling in the belly area too

Will our livers get any better if Harvoni treatment is successful?  My dr. said not but  I have read some things on here that make me hopeful.
He said we will monitor for tumors every 6 months afterwards.

So are we ESLD? sounds so ominous and scary

Thanks again for all the great info
-Deb

[Lynn K]

Agreed, end stage liver disease doe indeed sound ominous. And yes cirrhosis is ESLD

Basically it means that there is no further lever of progression as far as the liver is concerned so cirrhosis is the end stage OF liver disease. I found a little info here:

http://www.liverfoundation.org/chapters/ctalf/news/544/


A Patients Guide to End Stage Liver Disease (ESLD)

By Debi Palmeri, RN , Liver Transplant Coordinator, Hartford Hospital

Patients are said to have end-stage liver disease when they develop scarring (cirrhosis) in the liver. This means that healthy liver tissue has begun to be replaced by fibrous bands of scar tissue that run throughout the entire liver. As this process continues to progress, there are fewer healthy, working liver cells and more and more scar tissue. Unfortunately, it can be difficult to determine just how much reserve the liver has at any given time, as the liver can lose more than half of its normal ability without any physical symptoms or change in blood work. It is not uncommon to have a patient come into the emergency room with a major complication of ESLD, such as vomiting blood (upper GI bleeding), who had no idea they had anything wrong with their liver.

Many patients become understandably frightened when they are told they have any end stage organ disease and fear that this means they are nearing the end of their life. However, this is not always the case. In the case of liver disease, one of the important factors is whether or not the cirrhosis is compensated or decompensated and what can be done to prevent additional liver damage. What does this mean? It means that you can have one individual with well compensated cirrhosis that can lead a fairly normal life and another person with decompensated cirrhosis that is quite ill. In some cases, a patient can go back and forth between these two stages. They can develop a complication that is treated and stabilized and then return to their baseline. A good example of this is an episode of vomiting blood cause by varicose veins (varices) that rupture in the esophagus. This is treated by medication and localized, direct treatment of the varicose veins. If a period of time passes and the treatment is successful with no additional bleeding or other problems related to the ESLD, the patient is considered to have recompensated.

So we aren't done yet not by a long shot I do not hear the lady warming up off stage so she is not ready to sing.

There is no cleanse for the upper endoscopy just for the colonoscopy to clear the bowels but might as well get it all done at one time.

Just in case it crosses your mind the do the upper first

Will our livers get better only time will tell bet at least they won't get any worse and bay improve some over time. From what I have seen it is 50/50 but better than worse and worse.

If we should develop HCC and need a transplant at least we won't have hep c around to damage the new liver.

I will also be checked I am sure every 6 months at least with abdominal ultrasound and AFP blood test. Probably all the other blood tests as well Liver function, CBC, etc.
I also expect they will continue the annual upper endos for at least the foreseeable future since I had varicies.

But anyway if we beat hep c our liver disease will stop progressing and our risk of HCC will be less. We will still be at risk but less at risk that had we not treated and were cured.

Good Luck!

[Debula]

Thank you again Lynn.  You have been so helpful
I will be following your progress closely.  You are so close to EOT that I am getting excited for you.  I know you have had such a long journey and you soooo deserve to be cured for HepC finally
I am going to stay positive and hope for the very best possible outcome for both of our livers. (I have to admit I am kinda scared) Hopefully we got this treatment just in time and we will not experience any more liver related problems.

Good luck to you too!

[Lynn K]

Hi

Yeah I am kinda scared too.

I hope you and me and every one of our fellow heppers beat this thing and we can put hepatitis c in the history books!

6 Harvoni to go!