Hepatitis C / Cirrhosis / carcinoma

[Mona2440]

Hi everyone.
I'm scared to death. We think that my mother got hepatitis C genotype 2 25 yrs ago. She started to feel extremely tired, and her legs started to have edema. After many tests, the bad news: in an MRI the found a tumor in the liver. and then in the blood test, the hepatitis C was positive.
She had a biopsy and bad news: encapsulated carcinoma, and cirrhosis (first stage)
She is almost 80, but a very active and was a super healthy person. She still works, and is always in a very good mood.
We went to Chicago, and she had a treatment to the tumor: radioembolization (Y90). The hematologist did not considered she needed chemotherapy.
My mom started on Epclusa, but as I read, everyone has it for 12 weeks, my mother will need 168 tablets (equivalent to 24 weeks)
questions:
1. has someone had this procedure (radioembolization) ? what are the outcome, survival rate, etc?
2. doctor (no bedside manner at all!) told us that after treatment, he thinks that she will not recover every, that her liver is damaged and there is no possibility to regenerate.
3. any advice for her, to have some energy?
4. Does Epclusa side effect is as strong as Radioembolization side effect of tiredness? I hope that after one month (we are almost there) of the radioemboliztion, she will start to get some energy back.

please help me!

[Lynn K]

I’ve hear of people that had radioemboluzation  but I’m not familiar with what they experienced as far as symptoms but that is receiving target radiation treatment so I’m sure that can be tiring.

As far as a liver with cirrhosis healing there is evidence that once the cause of liver damage has been removed the liver does have an opportunity to heal. About 50% or better of patients will see a reduction in fibrosis scores. But even if the liver doesn’t improve with hep c gone at least the liver should not get any worse so as long as she has compensated liver disease she can still continue on. The goal at this point for those of us with advanced liver disease and cirrhosis is to not die from liver disease but from some other cause.

I was diagnosed with liver cirrhosis January 2008 and I’m still here. I was cured of hep c in 2015 with Harvoni. My liver fibrosis is still pretty much the same but my platelet count has gone up from 85 to about 110 still low but improved.

All I can add is no one knows how it will go and none of us have an expiration date stamped on our body.

Best to you and your family

[Mona2440]

thanks!!!!, did you had tiredness before you found out that you had hepatitis C and cirrhosis?
and did your symptoms got better?

[Lynn K]

Tiredness is the most common symptom of hep c but it is such a vague symptom is often ignored I mean who knows what is excess tiredness and what is normal aging when you have nothing to gauge against ya know?

But yeah I do feel a little better now post cure. But then again I am 61 and the weariness of knowing you have a chronic illness is weary making in itself

[Nina Mae]

Hi Mona,

I'm sorry to read all this.  I can't weigh in on the carcinoma but I did take Epclusa.  I took 12 weeks also (along with Ribaviron) and I only took Epclusa once a day....so the prescription calls for one pill daily (84 pills).

The only side effect I had from Epclusa was a bit headachey in the first week.  After that, I can't say it was anything invasive at all.  It's important to drink tons of water, as much as she can tolerate), take the Epclusa precisely at the same time daily.

My hepatologist is so clinical...poor bedside manner too but I think that comes along with this field of medicine.  I met one person so far that wasn't as robotic as the others.

If your Mom's been active all this time, she'll do well with treatment.  And with your support, she can't lose.

Best wishes...chin up!

Nina

[Mona2440]

thanks so much!, I hope she started feeling better soon.

[Nina Mae]

Hi again,

From my experiences so far and tiredness, well, I seem to be tired all the time but like Lynn K said, it's such a common symptom for so many ailments, who knows...

I can tell you this:  Before I started HCV tx (and even during most of it), I was unwell ~85% of the time.  I can honestly say that for the most part, I'm ~80-85% feeling better and I'm very grateful for that.

There are always good days and bad days...so if we can look for the better side of things and try not to dwell on the negative, well, that helps me.

Keep us posted...there's a lot of support and valuable information in this forum.

Best,

Nina

[Mona2440]

Thanks Nina!, I'm very happy!, Lab tests shows a significant decrease in Hepatits C virus. I hope she can stop the medicines before the 6 months she should take it.
Has anyone been told to stop taking the medicine before the 6 months? (Epclusa)

[Nina Mae]

Hi Mona, again.

Excellent news!  I took Epclusa for 12 weeks (3 mos).  I'm in Vancouver, BC so maybe the protocols are different.

I have standard orders for blood work from HCV tx:  these were regular labs that show hemoglobin, platelets, liver enzymes, etc that started on week 2 of tx; then week 4 and week 8...

Then when I completed tx (finished taking all pills), we did an end of treatment (EOT) and HCV RNA (Hep C virus testing).

So without complicating things more (sorry, I tend to ramble), they test for Hep C virus at EOT, then again week 12 follow up blood work and 'SVR12' (Sustained Virologic Response); and again week 24 follow up blood work and 'SVR24'.

From how I understand it, if one has an EOT RNA undetected; an SVR12 and SVR 24 both undetected, one is considered, 'Clinically cured' of HCV.

I'm sure others may weigh in.

I took Epclusa for the full 12 weeks as prescribed.

Keep up the great work and support!

Nina

[Lynn K]

Hi Mona

If she has been prescribed for 24 weeks there is a reason they have done so to hopefully ensure success.

I had three times treated in the past with interferon based regimes and was a null responder to treatment my viral load did not decrease at all while on treatment. In 2008 I was diagnosed with liver cirrhosis putting me in the category of one of the hardest to treat patients. When the new DAA meds were first approved in 2014 I treated for 12 weeks with Sovaldi and Olysio for 12 weeks. I was not detected at EOT but 12 weeks after I had finished treatment I was found to have relapsed. I was later determined for a patient like myself I should have likely been prescribed 24 weeks but we didn’t know that at the time when I was starting.

In Nov 2014 I started a 24 week treatment of Harvoni with ribavirin to hopefully make sure I was finally able to beat the virus. That treatment worked and I was finally cured of hep c.

Anyway, if she was prescribed 24 weeks she needs to complete the 24 weeks if at all possible. Unfortunately there is no way to know if treatment really worked until 12 weeks and maybe even 24 weeks after treatment has ended.

Best of luck

[Lynn K]

Per the Epclusa prescribing information for a patient with child B or child C cirrhosis the standard treatment is 12 weeks of Epclusa along with ribavirin. I’m thinking they are trying to spare her having to endure 12 weeks of ribavirin as that med is difficult for many to endure with strong side effects for many like pronounced anemia so instead they have prescribed a longer round of Epclusa of 24 weeks to hopefully ensure she has a successful treatment without having to endure Ribavirin. I’m just guessing about that but I do think it is an educated guess.

https://www.gilead.com/-/media/files/pdfs/medicines/liver-disease/epclusa/epclusa_pi.pdf

[Lynn K]

Ok found the reference for her treatment regimen from the AASLD (American Association for the Study of Liver Diseases) treatment guidelines

https://www.hcvguidelines.org/unique-populations/decompensated-cirrhosis

See in this link:

“Patients With Decompensated Cirrhosis Who Have Genotype 1, 4, 5, or 6 Infection and Are Ribavirin Ineligible“

“ Daily fixed-dose combination of sofosbuvir (400 mg)/velpatasvir (100 mg)   24 weeks”

Note sofosbuvir/velpatasvir is Epclusa

[Nina Mae]

Lynn, that actually makes sense...the 24 week Epclusa prescription vs riba.

I was on a very low dosage of riba and it wasn't pretty, I can say that. 

Hope you're doing okay, Lynn?

[Lynn K]

Yup fine as heck lol

Working full time living life

Hope you are doing well too

[Nina Mae]

So happy to read this, Lynn!

I'm doing 'okay', I guess...well, my cardiologist said I need a pacemaker for my slow heart rate but I can't because of the cirrhosis so...that's a bit of a bummer.

Hey, things could be so much worse, right?

 

[Lynn K]

Hey I have a slow heart rate too! Mine runs around 57 BPM but I don’t have any symptoms like dizziness on standing so no one seems too worried about it knock on wood

Best to you

[Mona2440]

Thanks!!!, it makes sense, because of the cirrosis, the 24 weeks treatment.
I hope my mom starts feeling better (more energy) maybe in a couple of weeks. The radioembolization to the tumor, plus starting Epclusa makes her feel very tired!

[Nina Mae]

Hey I have a slow heart rate too! Mine runs around 57 BPM but I don’t have any symptoms like dizziness on standing so no one seems too worried about it knock on wood

Best to you

Your BPM is ideal actually...that's what we're trying to accomplish with the beta blocker (propraponol or something like that).  My resting BMI 'was' running 43-48 BPM while on Nadolol and I was sooo incredibly dizzy. 

Now, I'm feeling much better with the medication switch. 

Thanks for asking!  And thanks for the warm wishes!  (Right back at ya!)

[Nina Mae]

And 'knock on wood' is right!

I take all good news well!  Hahaha!!

[Lynn K]

I had grade three esophageal varicies back in 2012. They wanted to use a beta blocker but I read the goal of using a beta blocker when used to reduce portal hypertension is to get the heart rate below 60 but since mine is already below 60 without any meds we couldn’t go that route. So instead I underwent 4 upper endoscopies over the next 4 months to have my varicies banded. Was having upper endoscopies every year until last year to check for reoccurrence but thankfully I haven’t had a return so now I’ll be having upper endoscopies every two years.

[Nina Mae]

I remember you 'speaking' of this before.  I have one column (Grade 2) esophagael varices.

I had a heart attack back in 2009 and I was taking different BP meds before all this showed up.  I wasn't having a problem with my BPM until now.  When I was in HCV tx, I did have that rare side effect (bradycardia) specifically attributable to Epclusa (as per my Hep C nurse).

When you 'speak' of recurrences, I'm not quite sure if you mean that there's been no changes for the worse or something else?  My hepatologist doesn't plan on any more endoscopies for me unless my condition worsens. 

I have an appointment to see him on December 4.  I plan on disputing this decision as I believe since we already know their presence, we should be monitoring this before an event occurs.

I do know that my ascites are "gone"; no fluid so that's pretty huge, I think.  My Child is 6.  I was told I'm 'borderline' (which I've assumed they mean borderline transplant candidate) and I'm hoping that my INR levels off; currently 1.7.  My platelets are at 143 so that's not that low.

I feel okay, I suppose, for the most part.  I still go to the gym but not as frequently; emphasizing cardio and less strength training.

I'll stop here for now...



 

[Lynn K]

I mean by reoccurrence that there has been no return of any varicies. Grade three is the highest level so represents a danger of a bleeding event which could be life threatening.

My mild Ascities have resolved as we’ll post cure

I think you mean your MELD score is 6 which is the lowest number on the scale which goes from 6 to 40. Even a healthy person would score a 6. The child score aka Child-Turcotte-Pugh score is letter grads of A B or C with C being decompensated cirrhosis

Most transplant centers require a score of 15 to be on the list. Most patients receive transplants with a MELD score around 30 possibly higher depending on wait times in the transplant region where they are registered. I assume when your doctor says borderline he means borderline cirrhosis as in early cirrhosis.

My INR is 1.1 and my platelets are 125

https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/

https://www.hepatitisc.uw.edu/page/clinical-calculators/meld


https://www.healthline.com/health/child-pugh-classification

[Nina Mae]

You're right.  I think the dr said '6' when calculating Child so I guess that would be Class A.

So now I'm thinking when she (Hep C nurse) said 'borderline', I'm thinking she means 'borderline decompensated' though she maintains on several conversations that I'm still compensated.

I get so scared that I don't ask for clarity at times and I know I should...

[Lynn K]

Well I hope I cleared a few things up for you. Yeah having ascities is a symptom of decompensation but since yours and mine are both resolved that is a good sign.

[Nina Mae]

Thank you, Lynn.

It'll all work out somehow, I hope...lol.  Like I said, I'm feeling better for the most part and I'm very grateful for that.

My nurse said that the dr wrote in his notes from last visit that he's considering stopping my lasix being that the ascites are resolved.

I suppose they may want to see my SVR24 results before doing anything yet.  That's scheduled for Nov 7.

(Fingers crossed)

[Mona2440]

Hi!, My mom had to be in the hospital 10 days because of 3 stomach bacterias and the albumina very low.
Because we are new with all this, the doctor never mentioned us to be ware of proteina intake, he just gave us the prescription, and told us that she could eat anything!, I’m so mad! Frustrated!
Now we are learning more about cirrhosis.
But I don’t understand if the biopsy says the cirrhosis is in first stage or justbegining (that is what the biopsy says in spanish, I translated it) why she has so many symptoms. Low albumin for example, and ascities and edema.

[Nina Mae]

Hi Mona,

I wish I could help you figure this out.  My first abdominal ultrasound, before I was even dx'ed, showed "Mild to Moderate Cirrhosis".   I 'had' ascities and edema (resolved with diuretics, thankfully); I still have portal hypertension.

I'm sorry to read she's having a tough time with it all. 

I'm hoping others will chime in with more knowledge.

Take good care of yourself too.

[Lynn K]

Hi Mona likely the biopsy says early currhosis but really the stages of cirrhosis are defined by symptoms. The excess fluid (ascities) she has can become infected with bacteria this is called spontaneous bacterial peritonitis or SBP it can be very serious complication of cirrhosis.

Low Albumin levels are also a frequent symptom of more advanced cirrhosis.

Really the recommendation about reducing protein intake is old thinking and not currently recommended. The thinking was that consuming protein could contribute to the development of HE hepatic encephalopathy. This was found to be incorrect and the greater risk is malnutrition for people with cirrhosis so protein reduction is no longer recommended. However, to reduce ascities the first recommendation should be to reduce salt (sodium) intake to less than 1,200 mg daily along with a diuretic as needed.

So sorry to hear you mom is having a hard time hopefully she will improve with time.

 https://emedicine.medscape.com/article/789105-overview

https://www.livestrong.com/article/106159-albumin-levels-cirrhosis/

https://www.webmd.com/digestive-disorders/understanding-cirrhosis-treatment

https://www.mayoclinic.org/diseases-conditions/cirrhosis/diagnosis-treatment/drc-20351492