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Author Topic: Good news/bad news  (Read 3412 times)

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Offline Flaco

  • Member
  • Posts: 56
Good news/bad news
« on: February 05, 2016, 12:20:49 pm »
Good day, y'all,

Had my fibroscan this morning.

The good news is that I'll likely be getting my Harvoni without too much trouble. Meaning expense - it doesn't look like it'll drive me to ruin.

The bad news is, of course, that I really really need it. The scan tech told me I'm F4! I'll wait to see my doc before I start shopping headstones and giving all my stuff away, but I wonder: How can I best protect what's left of my liver until I see my doctor next? And thereafter, for that matter.

Years ago when I studied up on all this I read of people drinking mass quantities of dandelion tea and using evening primrose oil. Those are the only ones I remember off the top of my head, and I wonder if those are even helpful? What might be some other things to try that make things easy on the liver? I already take milk thistle, and have been for a while. Oh, and ALA as well.

I'm still waiting for the last piece of the diagnosis puzzle - genotype, which takes 14 days or so. That gives me a week or so at least before I'll get to see my doctor. I'd really like to do no further harm to my liver in the meantime.

Thanks,
Jon

ETA: Funny thing is, no other tests point to cirrhosis. My doc told me last week that my blood work indicates an inflammation episode, but not cirrhosis. He also said my ultrasound looks good.  :o
« Last Edit: February 06, 2016, 07:11:22 am by Flaco »
Best Regards,
Jack

Diag 2001
Failed PEG-int/Riba 2002, 48 wks.
2015-16:
F4 compensated
VL 14.7 million
GT 1A
Alkaline Phosphatase(37-127 U/L): 12/23/15 216; 1/14/16 152; 1/29/16 103; 3/18/16 68; 4/1/16 70
SGPT (ALT) (15-78 U/L) 12/23/15 862; 1/15/16 753; 1/29/16 518; 3/18/16 48; 4/1/16 28
SGOT (AST) (9-44 U/L) 12/23/15 283; 1/15/16 226; 1/29/16 165; 3/18/16 24; 4/1/16 19
Start Harv 24 wks. 3/4/16
Undetected 2 weeks into Tx
Liver&metabolic nos. steadily improving since start TX
EOT 8/18/16

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Good news/bad news
« Reply #1 on: February 05, 2016, 01:21:18 pm »
Hi, Flaco -- We're both F4 with normal ultrasounds. You are years away from needing to shop for headstones. Getting the HCV out of your system will do an enormous amount of good. More and more studies are showing that it is possible to revert from F4 to a lower number and thus lose the cirrhosis label, which as far as I am concerned has only one purpose: to get people approved quickly for treatment ;)  Now that Harvoni has gotten rid of my HCV, my hepatologist feels I have a good chance of becoming non-cirrhotic (i.e., that my next FibroScan will show a drop from 19.5 kPa to below 12).

I'll leave it to others to post about their experiences with the things you mention (due to my other conditions and meds, I've avoided anything not backed by a lot of empirical testing). There is considerable evidence that coffee is good for the liver (and, of course, booze is bad).

Keep building up a big nest egg for your retirement years -- you're likely to live a long time.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline slats1056

  • Member
  • Posts: 762
  • SVR to all and to all a good life!
Re: Good news/bad news
« Reply #2 on: February 05, 2016, 01:29:16 pm »
 Flaco , as long as the meds. are in the pipeline You should be o.k.! Just take care of Yourself and eat good. The standard no alcohol or drugs. Get plenty of rest. Try not to stress about what You can't control. Live life and laugh. Plenty of knowledgeable people here to help out. Ask away , vent as needed , and check out the forums. Lots to check out here. ;D ;D ;D ;D . I personally stopped all supplements when I went on treatment to give the Meds. the fullest advantage to kill the Virus. Didn't want anything to interfere with the way it works. You are lucky and We live in great times of medical breakthroughs and technology. Remember to drink plenty of H2O during treatment and treat Yourself well and all should be good. Keep in touch and update Your signature when You can with all Your info.
 Good luck and Godspeed.

  ONE OUT OF FOUR PEOPLE ARE MENTALLY UNBALANCED! THINK OF THREE OF YOUR CLOSEST FRIENDS , IF THEY SEEM O.K.-----THEN YOU MUST BE THE ONE!
 8) 8) 8) 8) 8) 8) 8) 8)
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline Flaco

  • Member
  • Posts: 56
Re: Good news/bad news
« Reply #3 on: February 05, 2016, 02:49:00 pm »
Hi, Flaco -- We're both F4 with normal ultrasounds... More and more studies are showing that it is possible to revert from F4 to a lower number and thus lose the cirrhosis label, which as far as I am concerned has only one purpose: to get people approved quickly for treatment ;)  Now that Harvoni has gotten rid of my HCV, my hepatologist feels I have a good chance of becoming non-cirrhotic (i.e., that my next FibroScan will show a drop from 19.5 kPa to below 12).

That is great news, Gnatty, thanks! I wish you the best.

I'll leave it to others to post about their experiences with the things you mention (due to my other conditions and meds, I've avoided anything not backed by a lot of empirical testing). There is considerable evidence that coffee is good for the liver (and, of course, booze is bad).

Mmmm coffee! I'm a coffee geek (home roasting, espresso machine, etc.), so that'll work. I don't overdo it, though. Usually it's decaf but lately I've added one cup of the real deal just because the caffeine may be part of the liver-good of what's in coffee. I've already given up alcohol and so-called recreational drugs are WAaay in the past. I've been thinking about marijuana though, if I can't get something legal for this near-constant pain (joints, muscles, feet, etc. - sometimes it's a real chore just getting out of bed in the morning). Trouble with that is that I don't care for what pot does to my thought processes. Some people love it; I just don't. But if it helps... who knows?
And whatever my doc recommends re: supplements - I'm following that to the letter during Tx.

Keep building up a big nest egg for your retirement years -- you're likely to live a long time.

Thanks! Well, I'm retired, so the nest egg isn't growing. :P I wish

Thank you very much!
-J
« Last Edit: February 06, 2016, 07:04:49 am by Flaco »
Best Regards,
Jack

Diag 2001
Failed PEG-int/Riba 2002, 48 wks.
2015-16:
F4 compensated
VL 14.7 million
GT 1A
Alkaline Phosphatase(37-127 U/L): 12/23/15 216; 1/14/16 152; 1/29/16 103; 3/18/16 68; 4/1/16 70
SGPT (ALT) (15-78 U/L) 12/23/15 862; 1/15/16 753; 1/29/16 518; 3/18/16 48; 4/1/16 28
SGOT (AST) (9-44 U/L) 12/23/15 283; 1/15/16 226; 1/29/16 165; 3/18/16 24; 4/1/16 19
Start Harv 24 wks. 3/4/16
Undetected 2 weeks into Tx
Liver&metabolic nos. steadily improving since start TX
EOT 8/18/16

Offline Flaco

  • Member
  • Posts: 56
Re: Good news/bad news
« Reply #4 on: February 05, 2016, 02:59:36 pm »
Flaco , as long as the meds. are in the pipeline You should be o.k.! Just take care of Yourself and eat good. The standard no alcohol or drugs. Get plenty of rest. Try not to stress about what You can't control. Live life and laugh. Plenty of knowledgeable people here to help out. Ask away , vent as needed , and check out the forums. Lots to check out here. ;D ;D ;D ;D .

Great advice, Tommy; you're a wise man. :)

I personally stopped all supplements when I went on treatment to give the Meds. the fullest advantage to kill the Virus. Didn't want anything to interfere with the way it works.

Great advice - I shall follow it myself.

 
You are lucky and We live in great times of medical breakthroughs and technology. Remember to drink plenty of H2O during treatment and treat Yourself well and all should be good. Keep in touch and update Your signature when You can with all Your info.
 Good luck and Godspeed.

We are extremely lucky (well, you know what I mean) to have the modern meds! I feel like I was lucky to escape the stone age drugs with my life! The ones that offered less than a 50/50 chance of success.  ::)

Again, great advice. Thanks,
-J
Best Regards,
Jack

Diag 2001
Failed PEG-int/Riba 2002, 48 wks.
2015-16:
F4 compensated
VL 14.7 million
GT 1A
Alkaline Phosphatase(37-127 U/L): 12/23/15 216; 1/14/16 152; 1/29/16 103; 3/18/16 68; 4/1/16 70
SGPT (ALT) (15-78 U/L) 12/23/15 862; 1/15/16 753; 1/29/16 518; 3/18/16 48; 4/1/16 28
SGOT (AST) (9-44 U/L) 12/23/15 283; 1/15/16 226; 1/29/16 165; 3/18/16 24; 4/1/16 19
Start Harv 24 wks. 3/4/16
Undetected 2 weeks into Tx
Liver&metabolic nos. steadily improving since start TX
EOT 8/18/16

 


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