Author Topic: The slow road to recovery for some of us. (Read 53132 times)

gnatcatcher · « **Reply #100 on:** February 07, 2017, 05:51:06 am »

5 pounds in one week -- WOW!

Sergey · « **Reply #101 on:** February 07, 2017, 06:11:35 am »

Quote from: Lynn

Anyway I just personally think you are taking a larger risk by not treating before you develop symptoms especially given the low risk of HCC and the greater risk of decompensation making you more difficult to be successfully treated and at greater risk of further decompensation even with cure as I have been told is a possibility. But not my life so I just hope you don't come to regret your decision to wait and I hope you don't wait until it is too late.

Lynn, thank you. The problem for me is that there are different opinions about risks and benefits of treatment and about probability of HCC - but there is no strong evidence base from trials... Longterm posttreatment trials are absent and data from shortterm posttreatment trials regarding to HCC risks are controversial. It seems, treatment reduces or eliminates probability of decompensation in most cases, but situation with possible cancer risks is not clear... For me, it looks like becoming "guinea pig" in clinical trial. Some people feel that it is beneficial to be "guinea pig" and some feel that not. My cirrhosis is stable since 2005 (knocking on wood) and it is difficult decision for me... I don't know, I will think, maybe will use coin flip haha.

Sergey · « **Reply #102 on:** February 07, 2017, 01:58:16 pm »

Quote from: Lynn

So why does she expect I will decompensate eventually?

Lynn, I guess she was incorrect. My guess is that there is some low probability of decompensation in future, due to relatively advanced cirrhosis - but this is certainly not 100% probability.

Lynn K · « **Reply #103 on:** February 07, 2017, 04:39:05 pm »

I don't have advanced cirrhosis I am a child "A" with a score of 5 (which is as low as the score goes) or MELD 7 (starts at 6) I am a compensated cirrhotic. I don't have significant ascites, I don't have HE or bleeding varicies having those would say you have advanced cirrhosis. Bilirubin normal, albumin normal, creatinine normal. Only test that is low is platelet count and that has improved since treatment.

So even less reason to progress.

Maybe she needs to read more recent information on the subject.

Philadelphia · « **Reply #104 on:** February 18, 2017, 11:55:15 pm »

LYNN! I have been out of the loop and had no idea you were going through this. <big hugs>

The advice your nurse gave is not the same as what my specialist has given me. It's much more doom and gloom. And you know you and I are in similar positions for many things.

You're a fighter and you are tough.

Lynn K · « **Reply #105 on:** February 20, 2017, 11:29:14 pm »

Hi Philadelphia

Yeah you kind of fell off the planet there

From all I have read I was believing at minimum I would at least continue as I am.

What has your specialist said about prognosis?

Her concern is apparently due to my age (I will be 59 in March) that as we age in general we don't heal as well as we once did. However, I am (maybe fool heartedly) going with maybe I know more than my nurse and maybe she needs to read more about our prognosis post cure. I do know I need to lose a few pounds to help myself out so I will be working on that but I have decided that I will persevere and not get worse.

Never give up!

I also intend to follow my doctor who went from Swedish Liver Center to University if Washington the same place we have seen some of our best reference material. They do a lot of clinical trials there and have some of the experts in Hepatology there.

"The transition from compensated to decompensated cirrhosis occurs at a rate of approximately 5 to 7% per year. The median survival of compensated cirrhotics has been reported to be 9 to 12 years."

(Note: I have had cirrhosis at least since Jan 2008 so 9 years)

"Management: The major goal of managing patients with HCV and compensated cirrhosis is to treat the HCV infection. Patients with HCV-related cirrhosis who undergo treatment and achieve a cure have a dramatically decreased 10-year risk of all-cause mortality (Hazard ratio

= 0.26), liver-related mortality or transplantation (HR = 0.06), hepatocellular carcinoma (HR = 0.19), and hepatic decompensation (HR = 0.07). In addition, all patients with cirrhosis should undergo surveillance for hepatocellular carcinoma with hepatic ultrasound every 6 months and they should have a screening endoscopy to determine whether they have gastroesophageal varices (and if present evaluation of the size of the varices)."

http://www.hepatitisc.uw.edu/go/evaluation-staging-monitoring/evaluation-prognosis-cirrhosis/core-concept/all

I fightis thetitis · « **Reply #106 on:** February 21, 2017, 02:19:03 am »

Hi Lynn,

There is a part of these studies that seems to be unclear.
And that is, once you achieve SVR but already compensated F4, does that still indicate the compensated liver will always progress to decompensated?

It would seem logical, or perhaps just hopeful, that with the recent addition of DAA's over the last 2-3 years, there needs to be new studies with respect to the 9-12 year prognosis.
which, would appear to be based on an older model, perhaps pre DAA SVR aka interferon.

Or, perhaps no matter what the circumstance is, once the source that caused the compensation has been removed, you still advance to decompensated.
A rabbit hole with no chance of reversal or even status quo. Just certain deterioration.

THAT would not be cool..

I hope you are doing well.

Best,
Greg

Lynn K · « **Reply #107 on:** February 21, 2017, 02:36:54 am »

Hey Greg

What the AASLD says

"Patients who have undetectable HCV RNA in the serum, when assessed by a sensitive polymerase chain reaction (PCR) assay, 12 or more weeks after completing treatment, are deemed to have achieved an SVR. In these patients, HCV-related liver injury stops, although the patients remain at risk for non-HCV-related liver disease, such as fatty liver disease or alcoholic liver disease. Patients with cirrhosis remain at risk for developing hepatocellular carcinoma."

The AASLD are saying HCV liver injury stops. I have also seen some say there is a 50% chance of regression of damage for those with F4 although I don't have a link for that right now. I am not sure where my NP is getting her idea that no matter what even though I am cured she expects as you said "certain deterioration"

There is data from people with alcoholic cirrhosis who stop drinking they can have improvements in liver function the key is removing the reason for the damage stopping drinking or curing hep c. If alcoholics with cirrhosis can heal you would think I possibly can too.

Also I believe the 9 to 12 year median survival means what I read when I was first diagnosed that I had about a 50% chance of needing a transplant or dying within 9 to 12 years. But that was I believe if the cause of the damage was still ongoing.

We are in unknown country with so many now cured who were previously incurable but now have cirrhosis what is our prognosis. There just isn't a lot of data available yet. Maybe I can get into a study to help to that end plus gets me better tracking of my condition going forward.

So at this point I think I need a second opinion about all this.

I fightis thetitis · « **Reply #108 on:** February 21, 2017, 02:49:16 am »

Amen to that!

Have you seen this?
http://bit.ly/2m6JGO6 It is from 3 years ago but apparently trials were/are happening for fibrosis and cirrhosis reversal.

Lynn K · « **Reply #109 on:** February 21, 2017, 03:17:53 am »

Hadn't seen that specifically but yes very interested in meds that can help with fibrosis reversal I had heard something here and there about studies on fibrosis reducing medicines

Found this

https://www.ncbi.nlm.nih.gov/m/pubmed/24766091/

Cirrhosis regression in hepatitis C patients with sustained virological response after antiviral therapy: a meta-analysis.

RESULTS: Of the 443 patients with cirrhosis, 137 achieved a SVR. Of these 137 patients who achieved an SVR, 73 (53%) patients had regression of cirrhosis. The risk ratio of cirrhosis regression was 2.69 [Confidence Interval (CI) 1.45-4.97, P < 0.01] in patients who achieved a SVR. The risk of cirrhosis regression was consistently in favour of patients who achieved a SVR regardless of the length of the biopsy or whether the biopsy was reviewed by a single or multiple pathologists. The risk ratio of cirrhosis regression was related to the duration of follow-up between biopsies. The relative risk for regression of cirrhosis in studies in which the mean or median time for the follow-up liver biopsy was greater than 36-month was 4.33 (CI 1.1-17.0, P = 0.04) as compared to a relative risk of 1.79 (CI 1.26-2.29, P < 0.01) in studies with a mean or median time between the follow-up biopsy of less than 36-month.

CONCLUSIONS: Our results suggest that the majority of patients with cirrhosis who achieve a SVR develop cirrhosis regression. Time between biopsies appears to be an important determinant of the likelihood of cirrhosis regression.

Philadelphia · « **Reply #110 on:** February 21, 2017, 05:35:03 am »

My specialist just said my liver was holding its own and even had some "reserve". I.e. it was not over extended and reaching its capacity to do its job. How he worked that out I have no idea. My fibroscan dropped a smidge from 23.9 to 19.1. Still way high but any downward movement is welcome. I had a bit of a platelet bump too. From 59 to 72. Everything else normal.

gnatcatcher · « **Reply #111 on:** February 21, 2017, 07:27:20 am »

A 20% drop in kPas is way more than a smidge in my book, and a 22% rise in platelets I'd call more than a bit. Congrats, Philly.

Philadelphia · « **Reply #112 on:** February 21, 2017, 07:36:09 am »

I never thought of it like that - thanks! You've made my day! (Even though its night over here ... lol)

Lynn K · « **Reply #113 on:** February 21, 2017, 11:08:14 am »

Hey that's great about your numbers any change in the right direction is great news!

My platelets went from mid 90's to about 110 but Fibroscan went from 27 pre to 33 at 1 year post. I didn't do a Fibroscan this year. Yeah she said I am ok for now but believes eventually I would begin to decompensate but I don't really know why she believes that except because I am older.

Time will tell I guess.

Congrats again on your better numbers!

Bucky · « **Reply #114 on:** March 08, 2017, 04:44:57 pm »

Hello to all !!!
I am still hanging in there and continue to have improving health despite the fact that I am fighting Father Time.
My last check up went very well and all of my blood work is perfect with the exception of my platelet count. I am now over 100,000 which is quite good compared to where I was pre/post treatment. My doctor strongly feels that my liver destruction stopped with my cure.
Bucky

Lynn K · « **Reply #115 on:** March 08, 2017, 04:52:20 pm »

That is great news Bucky and great to hear from you too!

Have you had any fibroscans before and after treatment just curious.

Best wishes

Bucky · « **Reply #116 on:** March 08, 2017, 05:30:43 pm »

Hi Lynn,
No I haven't because my hospital didn't have fibroscan equipment available when I started treatment. I had the old needle jab to determine my fibrosis but I think that is why I was able to be in that very early group of people who got DAAs without an insurance hassle. My doctor had undisputable evidence that my liver was in big trouble.

My last US showed that my liver is normal size as well as my spleen. The blood is flowing correctly through my liver as well and my portal vein is normal size too. The center that I go to for my ultra sounds now has the fibroscan equipment. They actually received it so they could do scans on women with dense breast tissue. I am going to have one next time for a baseline should I need it.
Bucky
BTW, I am doing a tandem jump in three weeks, I received it as a Christmas gift.

Lynn K · « **Reply #117 on:** March 08, 2017, 06:05:03 pm »

Alright awesome you will never be the same have fun!

Thanks for the info too

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Author Topic: The slow road to recovery for some of us. (Read 53132 times)