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Author Topic: Harvoni- no trace, but have stage 4 Cirrhosis.  (Read 12662 times)

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Offline Maddawg46

  • Member
  • Posts: 31
Harvoni- no trace, but have stage 4 Cirrhosis.
« on: May 16, 2015, 12:27:04 pm »
So it's been 3 weeks since I finished my 12 week treatment.  No trace of the virus.  But since I have stage 4 Cirrhosis, I wonder if it's too little too late.  My liver is functioning fine and all my tests are normal.  Of course my doctor won't give me a life span prediction.   Mm.......I'll just still have a good time.  I figure I have maybe 5 years.  Bass tournament on Wednesday!
Logged
It's a battle.  Your at war.  Better get tough.  The virus is, so you better get the warrior mentality

Offline Sweetie1

  • Member
  • Posts: 28
Re: Harvoni- no trace, but have stage 4 Cirrhosis.
« Reply #1 on: May 16, 2015, 05:44:32 pm »
Hi, I had to respond to that, if all your liver function tests are good I think the liver is remarkable in that it can regenerate itself. Please don't put a timeline on your life, you could live 30 more years!  Take care, Karen
Logged

Offline Pete

  • Member
  • Posts: 110
Re: Harvoni- no trace, but have stage 4 Cirrhosis.
« Reply #2 on: May 16, 2015, 07:51:34 pm »
I've got advanced liver disease with "signs of early cirrhosis'  according to my biopsy results.  I'm not sweatin' it.  I feel great, tolerate most foods just fine, no ascites, no fatigue and can't wait to go fly fishing with my son in 3 weeks! 

There's a ton of info out there regarding cirrhosis and diet. Be sure to do your research, it can make a difference in the long run.  I do avoid adult beverages just to be on the safe side, and keep the salt to a minimum.

I tested negative for the virus (<12 ml/IU) at 8 weeks and have 2 weeks of Harvoni to go.

Good luck with your Bass Tournament... Fish on!





 
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Offline svalles1130

  • Member
  • Posts: 5
Re: Harvoni- no trace, but have stage 4 Cirrhosis.
« Reply #3 on: May 17, 2015, 09:23:36 am »
on Feb 27, 2015, viral load 10230953 and hep c Quant RT PCR of 7.01H. Am on 6 weeks since I started harvoni and first blood test shows viral load <15 detected and Hep C Quant RT PCR of <1.18H.  Is there someone out there that can decipher this numbers for me and let me know what they mean? My liver doctor won't be avail for two months.
Logged

Offline Debula

  • Member
  • Posts: 257
  • "Your body hears everything your mind says"
Re: Harvoni- no trace, but have stage 4 Cirrhosis.
« Reply #4 on: May 18, 2015, 10:50:33 am »
Svalles
I am not the right one to comment on your test results but at 6 weeks they look great to me!  Your VL looks almost Undetected  at <15   Hopefully next draw it will be undetected.  Not sure how to read and explain the other stuff either but your numbers have gone done significantly so that is GREAT!!
Good luck
Logged
80's DX: NonA,B
Non responder to Interferon
3/6/2015-GT 1a
VL-1920000 IU/mL
FibroSURE: Fibrosis stage F4 (0.79)
                  Necroinflammat activity A3 Severe (0.75)
AST 88,  ALT 120, Platelets 73
4/16/2015-Started Harvoni (24 weeks)
5/13/2015-4 weeks AST 26, ALT 36 
5/22/2015-5 weeks  VL UND
6/17/2015-9 weeks  VL UND AST 28 ALT 40
7/31/2015-15 weeks VL UND AST 27 ALT 39
9/22 Diagnosed with HCC
10/1-EOT
10/29-SVR4
12/23-SVR12
I AM HEPC FREE! :)

Offline SIXFOOTFOUR

  • Member
  • Posts: 89
Re: Harvoni- no trace, but have stage 4 Cirrhosis.
« Reply #5 on: May 18, 2015, 01:47:14 pm »
Stay positive, your better than you were before tx with the virus now your undetected and even though your Stage 4 it sounds like the liver is functioning, no jaundice, no ascites, be good to that liver and try to eat well, no alcohol, decrease sugar and, salt and some meds if possible and you will go longer and feel better.

Stay positive, putting a count down clock on your life is no way to live it and enjoy !!!

best of luck.
Logged
Sixfootfour
* Contracted Hep C 1971 post transfusion (non A - non
   B Hep dx in 1971)
* Dx as Hep C early 2000
* Geno 1b
* Stage 3-4 Fibrosis by Biopsy and FibroScan
* VL at start of TX > 6 mil
* ALT/AST High normal range at start of Tx 
* Started Harvoni 12 week course 3/6/15 -
   completion 5/29/15
* Undetected at 6 weeks on Tx
* ALT/AST Mid normal range at 6 week blood test
* Completed 12 weeks (84 pills) 6/28/15
* Undetected at 11 weeks & 6 months EOT

Offline Annie

  • Newbie
  • Posts: 2
Re: Harvoni- no trace, but have stage 4 Cirrhosis.
« Reply #6 on: May 20, 2015, 07:41:49 pm »
 I've been undetected since week 2 on the Harvoni  my start date was April 14, 2015.  Treatment is for only 8 weeks, I so wish it was longer, I have lots more energy and feel so much better on Harvoni! I'm scared to get off the stuff... LOL  Anyway  I had requested the following test ( PROMETHEUS FIBROSPECT ll )  from a GI because I seemed so tired all the time, he didn't think it had anything to do with the Hep c or my liver because my Alt & Ast are not that high. What a surprise when the test results came in... I have "advanced liver disease and cirrhosis". Wow I don't even smoke, drink or take any type of pills what a shock, I thought I was living a healthy lifestyle, anyway there's a ton of info out there regarding cirrhosis and diet!  Be positive!

F2-F4 PROMETHEUS FIBROSPECT ll (Consistent with METAVIR) Index 93 (collected on 01/21/15)
Lab Collected 03/16/2015:
 AST 40 ALT 33
HCV RNA, QN, PCR 161,000
HCV RNA, QN, PCR 5.21
 Started HARVONI 04/14/2015 8 weeks
 Lab Collected 04/29/15 at 2 weeks AST 23 ALT 20
 VL <15 detected & <1.18 detected
Doctor said UNDETECTED! 
4 weeks lab taken on 05/11/15  results UNDETECTED! 
19 days left on treatment & I'M STAYING POSITIVE
Logged
Female 63 years
Hep c GT 1b Treatment Naive 
Stage F2-F4 PROMETHEUS FIBROSPECT ll (Consistent with METAVIR) Index 93(collected on 01/21/15)
Lab Collected 03/16/2015
AST 40 ALT 33
HCV RNA, QN, PCR 161,000
HCV RNA, QN, PCR 5.21
Started HARVONI 04/14/2015 8wks
Lab Collected 04/29/15 at 2wks AST23 ALT 20
VL<15 detected <1.18 detected Dr. said UND!
4wks lab taken on 05/11/15 results UND!
6wks lab taken on 05/27/15 AST 24 ALT 20
HCVRNA<15NOT DETECTED,<1.8NOT DETECTED
NOW DOING 12 WEEKS TX :)

Offline Debula

  • Member
  • Posts: 257
  • "Your body hears everything your mind says"
Re: Harvoni- no trace, but have stage 4 Cirrhosis.
« Reply #7 on: May 21, 2015, 11:41:29 am »
Hi Annie
I am really surprised that your doctor did not know this before putting you on Harvoni.  I believe the protocol for TX with cirrhosis is 12 weeks at least.  Why did he put you on 8 weeks only?  Glad you are undetected though!  That is great news!
Logged
80's DX: NonA,B
Non responder to Interferon
3/6/2015-GT 1a
VL-1920000 IU/mL
FibroSURE: Fibrosis stage F4 (0.79)
                  Necroinflammat activity A3 Severe (0.75)
AST 88,  ALT 120, Platelets 73
4/16/2015-Started Harvoni (24 weeks)
5/13/2015-4 weeks AST 26, ALT 36 
5/22/2015-5 weeks  VL UND
6/17/2015-9 weeks  VL UND AST 28 ALT 40
7/31/2015-15 weeks VL UND AST 27 ALT 39
9/22 Diagnosed with HCC
10/1-EOT
10/29-SVR4
12/23-SVR12
I AM HEPC FREE! :)

Offline Annie

  • Newbie
  • Posts: 2
Re: Harvoni- no trace, but have stage 4 Cirrhosis.
« Reply #8 on: May 24, 2015, 03:05:47 am »
Hello Debula
I asked the Doctor, well I should say the nurse the same question, why only 8 weeks when the doctor told me 12 weeks her reply was that the insurance would only pay for 8 weeks because the  VL was so low. To be honest I'm afraid... I have never had any kind of test except the blood drawn PROMETHEUS FIBROSPECT ll  & a phone call from a nurse telling me how sick I was and that my insurance denied the Harvoni and that I needed to put in an appeal myself so I did, before the appeal date took place the insurance approved the drug and I with drawled the court appeal only when Avella called me for my co pay & fed ex brought out the starter pack. When I called the GI's office they didn't even know that the  insurance had approved the drug they just told me good take it once a day.  I have been trying to get an appointment with this doctor ever since with no luck I get the run around, he will be out of the office or he is booked up etc. etc. I finally got an appointment for the middle of June but it's with a N. P.  but I will be off the Harvoni by than. I have talked with a person from the Hep C Connection ( they gave me a list of doctors and said it would be wise to find another one), I spoke with a Pharmacist from Avella because just after the two week blood test (which my own family doctor ordered for me) I got really sick with a cough & sinus infection the on call G.I. doctor called me in  7 days of AMOX-CLAV 875MG TABLES and I wasn't sure if I could take them with the Harvoni, turned out it was ok. The GI doctor's nurse did order the four week blood test but it was only the VL nothing else... she called me left me a message saying  the meds are working and it's UNDETECTED and to finish up the medicine and in 3 month (September) I will do another blood test and if its clear it's a cure...  Everything I have found out about this medicine and Hep C has been threw my own research Please if you or anyone else can enlighten me  I would sure appreciate it!!!
Logged
Female 63 years
Hep c GT 1b Treatment Naive 
Stage F2-F4 PROMETHEUS FIBROSPECT ll (Consistent with METAVIR) Index 93(collected on 01/21/15)
Lab Collected 03/16/2015
AST 40 ALT 33
HCV RNA, QN, PCR 161,000
HCV RNA, QN, PCR 5.21
Started HARVONI 04/14/2015 8wks
Lab Collected 04/29/15 at 2wks AST23 ALT 20
VL<15 detected <1.18 detected Dr. said UND!
4wks lab taken on 05/11/15 results UND!
6wks lab taken on 05/27/15 AST 24 ALT 20
HCVRNA<15NOT DETECTED,<1.8NOT DETECTED
NOW DOING 12 WEEKS TX :)

Offline theskier

  • Newbie
  • Posts: 2
Re: Harvoni- no trace, but have stage 4 Cirrhosis.
« Reply #9 on: May 24, 2015, 01:31:52 pm »
63 yr old male
geno 1a
hep c since 1972
cryoglobulinemia
f4 liver
sovaldi/gs5816 trial12 weeks nov.2014 thru jan 2015
alt 257 ast 191 begin
alt 26 ast 27 after 2 months
Yes got to believe in 30 more years. My liver region is on fire and I do not provoke it. Fatigue and interior fever  as well.
Logged

Offline Debula

  • Member
  • Posts: 257
  • "Your body hears everything your mind says"
Re: Harvoni- no trace, but have stage 4 Cirrhosis.
« Reply #10 on: May 26, 2015, 02:40:43 pm »
Quote from: Annie on May 24, 2015, 03:05:47 am
Hello Debula
I asked the Doctor, well I should say the nurse the same question, why only 8 weeks when the doctor told me 12 weeks her reply was that the insurance would only pay for 8 weeks because the  VL was so low. To be honest I'm afraid... I have never had any kind of test except the blood drawn PROMETHEUS FIBROSPECT ll  & a phone call from a nurse telling me how sick I was and that my insurance denied the Harvoni and that I needed to put in an appeal myself so I did, before the appeal date took place the insurance approved the drug and I with drawled the court appeal only when Avella called me for my co pay & fed ex brought out the starter pack. When I called the GI's office they didn't even know that the  insurance had approved the drug they just told me good take it once a day.  I have been trying to get an appointment with this doctor ever since with no luck I get the run around, he will be out of the office or he is booked up etc. etc. I finally got an appointment for the middle of June but it's with a N. P.  but I will be off the Harvoni by than. I have talked with a person from the Hep C Connection ( they gave me a list of doctors and said it would be wise to find another one), I spoke with a Pharmacist from Avella because just after the two week blood test (which my own family doctor ordered for me) I got really sick with a cough & sinus infection the on call G.I. doctor called me in  7 days of AMOX-CLAV 875MG TABLES and I wasn't sure if I could take them with the Harvoni, turned out it was ok. The GI doctor's nurse did order the four week blood test but it was only the VL nothing else... she called me left me a message saying  the meds are working and it's UNDETECTED and to finish up the medicine and in 3 month (September) I will do another blood test and if its clear it's a cure...  Everything I have found out about this medicine and Hep C has been threw my own research Please if you or anyone else can enlighten me  I would sure appreciate it!!!

I am just in shock over the lack of interest your doctor's office is showing
I am glad you are UND though! That is really good news.  If I were you, I would try to find another doctor ASAP before you finish your 8 weeks.  They should at LEAST put you on 12 weeks.  I think that your insurance would cover it if they knew that you had cirrhosis.  Maybe the doctor didn't fill out the paperwork correctly?   Anyway I don't mean to alarm you and you are UNDETECTED which is AWESOME news but please try to see another GI or liver specialist BEFORE you finish your 8 weeks of Harvoni..
Logged
80's DX: NonA,B
Non responder to Interferon
3/6/2015-GT 1a
VL-1920000 IU/mL
FibroSURE: Fibrosis stage F4 (0.79)
                  Necroinflammat activity A3 Severe (0.75)
AST 88,  ALT 120, Platelets 73
4/16/2015-Started Harvoni (24 weeks)
5/13/2015-4 weeks AST 26, ALT 36 
5/22/2015-5 weeks  VL UND
6/17/2015-9 weeks  VL UND AST 28 ALT 40
7/31/2015-15 weeks VL UND AST 27 ALT 39
9/22 Diagnosed with HCC
10/1-EOT
10/29-SVR4
12/23-SVR12
I AM HEPC FREE! :)
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