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Author Topic: Need Advice  (Read 9018 times)

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Offline dragonslayerinprogress

  • Member
  • Posts: 62
Need Advice
« on: April 11, 2016, 09:54:20 pm »
Today is my last day of treatment. I have 2 Ribavirin's left. I'm thinking, I don't want to end treatment yet. Funny huh?

Everywhere I seem to look, 16 weeks is the standard for Geno2b. I was put on 12 weeks. Compensated Cirrhosis.
The pharmacy has sent out another prescription refill. (they either don't know that I went through another pharmacy for first batch ) or (it's a sign)
I just know that I don't want to relapse. If I have to stay on them for 24 weeks, I will if I know it won't come back.
What would you do?
Going to call Dr. in the morning.
I read somewhere that treatment was 8 weeks for non cirrhotic and 12 for cirrhosis so not sure where I saw that from. As long as I'm functioning and my hemoglobin is okay, don't see a reason to quit just yet!
Logged
Geno 2b
dx in 1990, 52 years old
Origin: unsure. Might have been infected at birth
Tx Naive
Pre tx labs 12/7/15
VL 1,315,890 6.119
ALT 188
AST 161
Started tx Solvadi/Ribavirin on 1/19/16
4 weeks undetected
8 weeks undetected
12 weeks undetected
16 weeks undetected
20 weeks undetected
24 weeks...no testing
EOT 4 wks UNDETECTED
ALT 34
AST 42
EOT 8 wks- UNDETECTED
ALT 38
AST 50
Platelets 49

Offline dragonslayerinprogress

  • Member
  • Posts: 62
Re: Need Advice
« Reply #1 on: April 11, 2016, 09:59:19 pm »
LAB RESULTS   NORMAL RANGE   1/27/2012   3/11/2015   12/7/2015   1/8/2016   2/8/2016   2/29/2016   3/21/2016
F-4      F1-F2   F-4   F-4   F-4   F-4   F-4   F-4
VIRAL LOAD   0.00   250,000   Not Done   1,315,890   <11   UNDETECTED   UNDETECTED   UNDETECTED
HEMOGLOBIN   12.1-15.1   16   15.2   13   13.3   12.2   11.8   11
ALBUMIN   3.4-5.4   4.4   3.7   3   3   3.1   3.1   3.2
BILIRUBIN TOTAL   0.3-1.0   0.5   1.2   1.9   2.1   1.8   1.4   1.4
INR   0.8-1.2   Not Tested   Not Tested   1.3   1.1   1.1   1.3   Not Tested
ALT   (7-56)   142   287   188   251   51   50   43
AST   (5-40)   80   265   161   174   47   44   40
CREATINE   0.57-1.00   0.7   0.7      0.74   0.61   0.67   0.066
PLATELETS   150,000-450,000   171   72   58   CRITICAL 47   57   59   60
ALK PHOS   45-117   79   173   175   182   167   165   158
Mag   1.80-2.40            1.78         
anion gap   10.0-20.0            8.6         
Alpha 2 Macro   110-276   452                  
Apolipoprotein   110-205   153                  
Logged
Geno 2b
dx in 1990, 52 years old
Origin: unsure. Might have been infected at birth
Tx Naive
Pre tx labs 12/7/15
VL 1,315,890 6.119
ALT 188
AST 161
Started tx Solvadi/Ribavirin on 1/19/16
4 weeks undetected
8 weeks undetected
12 weeks undetected
16 weeks undetected
20 weeks undetected
24 weeks...no testing
EOT 4 wks UNDETECTED
ALT 34
AST 42
EOT 8 wks- UNDETECTED
ALT 38
AST 50
Platelets 49

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Need Advice
« Reply #2 on: April 12, 2016, 12:06:44 am »
I'd do it but I'm not a dr nor do I play one on tv.

I'd run it by my dr though.

I found the AASLD guidelines below interesting

http://www.hcvguidelines.org/full-report/initial-treatment-box-summary-recommendations-patients-who-are-initiating-therapy-hcv
« Last Edit: April 12, 2016, 02:25:31 am by Philadelphia »
Logged
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline Gaj

  • Member
  • Posts: 172
  • Optimist
Re: Need Advice
« Reply #3 on: April 12, 2016, 03:49:42 am »
Both AASLD and EASL guidelines suggest that gt2 with compensated cirrhosis should receive a minimum of 16 weeks. Based on that and the fact that the pharmacy has another refill waiting for you, I wonder if you were supposed to be given 16 weeks and someone messed up the notification to you but told the pharmacy the correct length.

If it was me I would certainly be checking with my doctor to make absolutely sure I was getting the recommended best possible treatment to cure the HCV while monitoring for potential sides from the ribavirin.
Logged
Male - 61 years
Genotype 3a (since 1978?)
Diagnosed 2012
Treated 2013 PEG/Riba/Dac (Relapsed)
F4 - HCC#1 Resected 06/15 - #2 RFAblated 11/15
11/18/15 Commenced Generic Tx - Sof/Dac/Riba (24wks)
Pre Tx = ALT: 270  AST: 209  ALB: 31
05/05/16 = ALT: 34  AST: 32  ALB: 40  VL: Undetected (EOT)
06/16/16 = Relapsed
06/23/16 = ALT: 92  AST: 59  ALB: 40  VL: 290,770
01/12/17 3rd Tx - Zepatier + Sofosbuvir (16wks)
05/03/17 EOT und
06/22/17 SVR7 und
07/27/17 SVR12 UND!
10/26/17 SVR24 UND & Cured!!!

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Need Advice
« Reply #4 on: April 12, 2016, 06:21:19 am »
The AASLD guidelines are THE official word (they're what wise hepatologists go by), and when the guidelines are changed, insurance companies (slowly) follow suit. The guidelines are evidence if you have to fight to get insurance to pay for weeks 13-16.

The guidelines said I was to get 12 weeks, but that didn't stop my pharmacy (CVS specialty pharmacy) from sending reminders by email and phone around week 10 that it was time to reorder. When I phoned to inquire whether insurance would cover a fourth bottle, I was told NO -- they just hadn't taken me off the reminder list.

Gnatty
Logged
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 dragonslayerinprogress

  • Member
  • Posts: 62
Re: Need Advice
« Reply #5 on: April 12, 2016, 03:43:36 pm »
Dr. wants me to do 24 weeks. 16 didn't sound bad but another 3 months? Oy. Praying that it's a good thing. Had some extra Ribavirin so got to take my morning dose and now just waiting for the new Solvaldi and Riba to be delivered today. The rash has eased up and as long as my hemoglobin stays up, I should be okay. There really hasn't been side effects that have made me really sick. Have my up days and down days. I just want to take no chances. Thanks for the advice and the links.
Logged
Geno 2b
dx in 1990, 52 years old
Origin: unsure. Might have been infected at birth
Tx Naive
Pre tx labs 12/7/15
VL 1,315,890 6.119
ALT 188
AST 161
Started tx Solvadi/Ribavirin on 1/19/16
4 weeks undetected
8 weeks undetected
12 weeks undetected
16 weeks undetected
20 weeks undetected
24 weeks...no testing
EOT 4 wks UNDETECTED
ALT 34
AST 42
EOT 8 wks- UNDETECTED
ALT 38
AST 50
Platelets 49

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Need Advice
« Reply #6 on: April 12, 2016, 04:46:18 pm »
I think your doctor is very wise. You know 2's can be tricky to treat so let's give this the best shot possible.

I did 24 weeks. Yeah, it's a slog after a while but it's a slog that brings you closer to a cure every day.
Logged
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline dragonslayerinprogress

  • Member
  • Posts: 62
Re: Need Advice
« Reply #7 on: April 12, 2016, 06:20:12 pm »
Philadelphia....did the side effects get worse or did they start going away as treatment went along? The 11th and 12th week of treatment were the worse of all of them. Itching, oedmea..etc. Seems like they are calming now and hoping it's an easy downhill stride from here.

Dr. Called me and I asked him to check my ultrasound that I had last year. It showed a normal liver, no dilation in any ducts, so no portal hypertension and there was just sludgd in the gallbladder with no stones and a borderline englarged spleen. From that, I'd say no cirrhosis but the bloodwork seemed to point otherwise. I've never had a fibroscan and it was the fibrosure that went from an F-1-F-2 in 2013 to an F-4 in 3 years. Maybe the virus was just really active at that time? No idea. Need to set up a referral to a hospital that does fibroscans. UCLA is one but we are not contracted through them so I'd have to go to Loma Linda. I hear they are wonderful too!
Logged
Geno 2b
dx in 1990, 52 years old
Origin: unsure. Might have been infected at birth
Tx Naive
Pre tx labs 12/7/15
VL 1,315,890 6.119
ALT 188
AST 161
Started tx Solvadi/Ribavirin on 1/19/16
4 weeks undetected
8 weeks undetected
12 weeks undetected
16 weeks undetected
20 weeks undetected
24 weeks...no testing
EOT 4 wks UNDETECTED
ALT 34
AST 42
EOT 8 wks- UNDETECTED
ALT 38
AST 50
Platelets 49

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Need Advice
« Reply #8 on: April 12, 2016, 06:34:58 pm »
I was on Viekira and riba but it's important to note I had a reduction in my riba dose quite early. Once it was lowered I found everything easier. I sometimes think the last bit of time is the hardest because you KNOW it's coming to an end. Things get to you that normally you'd soldier through.

I just put one foot in front of the other until t reached the end.
Logged
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Need Advice
« Reply #9 on: April 12, 2016, 08:15:53 pm »
Quote from: dragonslayerinprogress on April 12, 2016, 06:20:12 pm
. . . Dr. Called me and I asked him to check my ultrasound that I had last year. It showed a normal liver, no dilation in any ducts, so no portal hypertension and there was just sludgd in the gallbladder with no stones and a borderline englarged spleen. From that, I'd say no cirrhosis but the bloodwork seemed to point otherwise. I've never had a fibroscan and it was the fibrosure that went from an F-1-F-2 in 2013 to an F-4 in 3 years. Maybe the virus was just really active at that time? No idea. . . .

As you can see below, I had both a FibroScan and a FibroSure within a couple of days of each other. I'm unusual in having a lower FibroSure than FibroScan result; when results differ for most people, the FibroScan tends to be lower. Let's hope that's true for you. None of my ultrasounds have shown anything worrisome about my liver, so the F4 came as quite a surprise.
Logged
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 dragonslayerinprogress

  • Member
  • Posts: 62
Re: Need Advice
« Reply #10 on: May 02, 2016, 03:57:18 am »
Hoping to get a referral to a hepatologist to do a fibroscan soon. Week 16 has just about started
Logged
Geno 2b
dx in 1990, 52 years old
Origin: unsure. Might have been infected at birth
Tx Naive
Pre tx labs 12/7/15
VL 1,315,890 6.119
ALT 188
AST 161
Started tx Solvadi/Ribavirin on 1/19/16
4 weeks undetected
8 weeks undetected
12 weeks undetected
16 weeks undetected
20 weeks undetected
24 weeks...no testing
EOT 4 wks UNDETECTED
ALT 34
AST 42
EOT 8 wks- UNDETECTED
ALT 38
AST 50
Platelets 49

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Need Advice
« Reply #11 on: May 03, 2016, 05:48:32 am »
How are you feeling? 8 weeks left!! Well over half way through!
Logged
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell
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