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Author Topic: Hep C returned  (Read 20354 times)

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Offline yag1064

  • Member
  • Posts: 58
  • Enjoy the life you have.
Hep C returned
« on: February 09, 2015, 10:39:26 pm »
To All who know me,
     I could really use what this group has..love and understanding. I just has told that my Hep has returned. I am really having a hard time with this. I finished a 12wk treatment plan of Sovaldi, Interfurion, and Ribaviran. After 2 weeks my tests were all showing no viral load. I took another 6wk after treatment and all seemed good. Well I just received the results of my 6 month blood test and the virus is now detected again. It hit me like a ton of bricks. I believed I was past this disease.
   I really feel depressed. I don't know what is ahead of me. My GI is referring me to a University Dr. I will probably have to do battle again with my insurance carrier.  This was my second treatment.  I don't know how many times I will be allowed to get treatment. Is there a point where everything stops? My mind is spinning.
   I am glad there is a place like this to release this pain.

 Rick
Tested positive 2007
Non respond-er to treatment 16wk of 48wk
Started I/R/Sol May 2014
Hep C returned as of Jan 2015
Started Harvoni Sep 16, 2015
1st Test V/L:20
2nd Test V/L: undetectable
Dec 2015 EOT V/L undetectable
12 wk SVR :undetectable  Mar 25,2016
24 wk SVR: undetectable  Jun 24,2016
52 wk SVR undetectable   Dec 16,2016   -- I,m past it!!!
Shambhala

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,545
  • Get tested, get treated, get cured, fight Hep c!
Re: Hep C returned
« Reply #1 on: February 09, 2015, 11:29:09 pm »
So sorry to hear of your relapse. I also relapsed last year after treating with Sovaldi and Olysio for 12 weeks when I tested 12 weeks post treatment. I also was very disappointed as I have been a multiple null responder and had never seen undetected on my lab report before.

Are you GT 1? If yo u are there is the newest treatment called Harvoni it is a combo pill of Sovaldi and a new drug Ledipasvir in a single pill.

As far as repeating treatments and insurance I treated years ago 3 times and as I said last year with Sov/Oly and am currently treating with Harvoni for 24 weeks with the addition of Ribavirin. This is my 5th treatment.

Hugs to you Rick and all my best
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline badbradley

  • Member
  • Posts: 294
Re: Hep C returned
« Reply #2 on: February 10, 2015, 12:21:34 pm »
Hi Rick,
   I also have received news today that my treatment has failed. I treated on S/O for 12wks. It is disappointing for sure! This was my first treatment and was so hoping to be cured with this first round, but not to be. The trials are not over, we are the trials, all of us! Perhaps we should have treated for24wks vs 12wks. Hoping next time we get it right! This is a new day for Hep C treatment and I am confident that one day, we will be free from this Demon! I will not let this disease control my life! I will fight with all my might and I will defeat this beast, as will you! So, chin up friend, our journey continues. We will be cured! Best wishes.
                                                                                Brad
« Last Edit: February 10, 2015, 12:31:25 pm by badbradley »
Geno 1a
Sov/Oly 12wks - relapse
Har/Riba 12wks
Alt-16  Ast-17 SVR - 12
Alt-15  Ast-14 SVR - 24

Offline Tpropane

  • Member
  • Posts: 65
  • Heal the past by living in the present.
Re: Hep C returned
« Reply #3 on: February 10, 2015, 12:35:59 pm »
That is so disheartening. I'm sure it is very upsetting for you. I can only imagine how I would feel. It is all of our biggest fear and for you it came true. Chin up, if you can. Ask about Harvoni. I'm on for 24 weeks and really praying for SVR.
Lynn (Are you on Harvoni with Riba for the whole 24 weeks?) I wonder with stubborn 1a with a TT allele. There is one more tell as to the type of 1a someone might have.Not sure what it means except my doc said TT is the hardest to cure???)
Please don't get too down. Be sad for a day or so then get back in the ring. Lots of new drugs being worked on and Harvoni looks very promising.
We all worry but we are still breathing. There is always hope.
 :(TPropane
Hep C 1A / TT diagnosed 2009
Non Responder Boceprevir/riba/peg 2011
F-4 Cirrhosis
TX Harvoni 24 weeks started 1/20/15
2 week labs VL 174!
4 week labs UNDETECTED !
8 week labs UNDETECTED !

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,545
  • Get tested, get treated, get cured, fight Hep c!
Re: Hep C returned
« Reply #4 on: February 10, 2015, 01:37:48 pm »
Hi T

I started on Harvoni x 24 but at week 10 we added the Riba to EOT or if I need to stop or reduce sooner I just noticed the prescription for the Riba is 12 weeks so maybe Harvoni alone for 9 weeks followed by either 12 or 15 or as tolerated weeks of Riba.

But the Harvoni definitely for 24 weeks

You are talking about the IL 28 gene that has 2 variations the TT or the C/T Allele I am aware of this genetic variation I have never been tested but based on my treatment history assuming I have worst case senario

Info about IL28 gene and allele it is something we have not the virus

http://hepatitiscnewdrugresearch.com/hepatitis-c-testlikelihood-of-achieving-svr.html
 
« Last Edit: February 10, 2015, 01:45:35 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline yag1064

  • Member
  • Posts: 58
  • Enjoy the life you have.
Re: Hep C returned
« Reply #5 on: February 10, 2015, 01:55:50 pm »
I know I am in the right place. Everyone's response is genuine and uplifting. We are all in this together. My gastro called yesterday and is referring me to a Univ of Buffalo doctor. Also he mentioned Harvoni as the next treatment. So that is what is next.
  I am a practicing mediator and member of a sangha. The dharma say that life is suffering. Mostly because of grasping on to a story line. When that story doesn't turn out like you wrote it, you hurt. That is what I did. I originally started treatment in 2007 when all that was available was the shot and pills. After 16wk of treatment it was stopped. I was not responding. So I got really depressed and things were generally bad for me. Things changed when I decided to live with the virus, even though it is a squatter. Funny how you can't push things away. I got involved with Buddhism and meditation as a philosophy of navigating through my life. I still have one, ass it is. I relaxed and things were easier to handle. That was the way it was for 4 years. Then my friend showed me an article about the new drugs for HepC. I started with Sovaldi after battles with the insurance carrier and after the 2ND wk my test came back as not detectable, which was a first. I finished the treatment and had a good test after treatment. That's when I wrote the story of being cured. Now when reality showed me what is real, I fell off my horse. Time for me to get back up and ride.

Thank you all your compassion. You have BIG hearts

Sincerely Rick 
Tested positive 2007
Non respond-er to treatment 16wk of 48wk
Started I/R/Sol May 2014
Hep C returned as of Jan 2015
Started Harvoni Sep 16, 2015
1st Test V/L:20
2nd Test V/L: undetectable
Dec 2015 EOT V/L undetectable
12 wk SVR :undetectable  Mar 25,2016
24 wk SVR: undetectable  Jun 24,2016
52 wk SVR undetectable   Dec 16,2016   -- I,m past it!!!
Shambhala

Offline Lynn K

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  • Member
  • Posts: 4,545
  • Get tested, get treated, get cured, fight Hep c!
Re: Hep C returned
« Reply #6 on: February 10, 2015, 03:38:01 pm »
Couldn't have said it better than that Rick. Just get up, dust yourself off, cinch up your belt, get back on that bronco and hold on for the ride!

Good luck cowboy
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Mike

  • Member
  • Posts: 999
Re: Hep C returned
« Reply #7 on: February 11, 2015, 10:48:01 am »
Hi Rick,

Sorry to hear this news.

Harvoni would be the next step (on the bright side, at least you don't have to take 3 pills a day and weekly INTF injections).

Hang in there, keep your chin up and move forward - we'll have your back!

Best wishes, Mike
« Last Edit: February 11, 2015, 01:28:06 pm by Mike »
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline lporterrn

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  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Hep C returned
« Reply #8 on: February 11, 2015, 12:42:51 pm »
Rick and Brad,
Oh, I am reeling. I really wan't expecting to hear this news from either of you, especially so late in the follow-up Rick. I am so sorry. What I know about both of you (and I already see it in this thread), is you are made of tough stuff. But darn, this sucks.

One thing that helped me was drawing strength from others who tried more difficult treatments than I had, and did it more times. My friend Sanjiv succeeded on his 6th. We were in the same clinical trial - my 3rd attempt, his 6th, and I told myself I could do this at least as many times as he did. His story is long, but it is very inspiring: http://www.hcvadvocate.org/community/stories/Sanjiv_newest.pdf

So, hope you know we are here for you, the way you have been here for others.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline yag1064

  • Member
  • Posts: 58
  • Enjoy the life you have.
Re: Hep C returned
« Reply #9 on: February 11, 2015, 02:37:03 pm »
Thank You lporterrn,
   Your words are kind and needed. Yea there could have been other outcomes that would have been more acceptable. But that is life. It gives us opportunities to respond. How we respond is what is important.
   For all the damage the virus is doing, I marvel at all the good it has done for me. It is teaching me to ride my life instead of letting it ride me. But sometimes I fall off the horse. And that's why it is nice to have a place like this to come to for rest.

   Thank You All,

   Rick
Tested positive 2007
Non respond-er to treatment 16wk of 48wk
Started I/R/Sol May 2014
Hep C returned as of Jan 2015
Started Harvoni Sep 16, 2015
1st Test V/L:20
2nd Test V/L: undetectable
Dec 2015 EOT V/L undetectable
12 wk SVR :undetectable  Mar 25,2016
24 wk SVR: undetectable  Jun 24,2016
52 wk SVR undetectable   Dec 16,2016   -- I,m past it!!!
Shambhala

Offline Maxlaw

  • Member
  • Posts: 20
Re: Hep C returned
« Reply #10 on: February 11, 2015, 03:47:30 pm »
Lucinda, thank you for sharing Sanjiv's story...I had not read that. That was without a doubt one of the most inspiring, uplifting stories of perserverance and enlightenment I have ever read! I learned a lot just now by reading that, so thank you.

And to Rick and Brad, keep fighting the good fight! Your cures are just around the corner, I'm certain of it. I am in a clinical trial right now, and the third generation DAA's are even better than the previous ones. Cure for everyone is near...I feel it and I believe it!

Blessings to everyone,
Max
GT 3a, dx 07/2014, baseline VL <400K, Fibrosis stage F2 prior to treatment; Completed AbbVie trial drugs ABT-493 & ABT-530 03/01/2015; achieved SVR 12 on 5/27/15...CURED!!

Offline dragonslayer

  • Member
  • Posts: 873
Re: Hep C returned
« Reply #11 on: February 12, 2015, 05:38:01 pm »
That is so disheartening. I'm sure it is very upsetting for you. I can only imagine how I would feel. It is all of our biggest fear and for you it came true. Chin up, if you can. Ask about Harvoni. I'm on for 24 weeks and really praying for SVR.
Lynn (Are you on Harvoni with Riba for the whole 24 weeks?) I wonder with stubborn 1a with a TT allele. There is one more tell as to the type of 1a someone might have.Not sure what it means except my doc said TT is the hardest to cure???)
Please don't get too down. Be sad for a day or so then get back in the ring. Lots of new drugs being worked on and Harvoni looks very promising.
We all worry but we are still breathing. There is always hope.
 :(TPropane


TProp,
Im also TT.. However, what Ive read, confirmed by my dr. is that the IL28B gene WAS a factor when faced with Interferon, however, with Harvoni, its not a factor.  I'd imagine that applies to all the new DAA treatments, but thats a guess.  But at least  for Harvoni, its not supposed to be a factor.
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline badbradley

  • Member
  • Posts: 294
Re: Hep C returned
« Reply #12 on: February 12, 2015, 07:06:24 pm »
Lucinda and Maxlaw,
Thank you both for your encouragement. I have been in contact with my GI doc and there is a hepatology team being brought in for further exams etc.
I am a candidate for Harvoni but at this point nothing is decided. I will be seeing them soon. It sounds like they want to keep on top of this so I am feeling hopeful again! I will be going in for some other labwork tommorrow. As Rick stated, I as well will probably have to do battle with my insurance. Not looking forward to that game but we do what we must! Thank you again for your support. Very much appreciated!
                                                                Brad
Geno 1a
Sov/Oly 12wks - relapse
Har/Riba 12wks
Alt-16  Ast-17 SVR - 12
Alt-15  Ast-14 SVR - 24

Offline Islandgirl

  • Member
  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Hep C returned
« Reply #13 on: February 12, 2015, 07:47:19 pm »
OMG, Rick and Brad!  I'm stunned and brokenhearted for you both.  I'm praying that you will be approved for Harvoni and that it will work for you!

My 12 wks Harvoni ends on the 25th and will have labs done at one month post treatment and again 6 months from then  I can't imagine how I would feel to get the news you just did, although I do think about it off and on - scares the hell out of me.

I almost missed these posts but you can be sure I'll be looking for them in the future.  You are in my thoughts and prayers - sending you positive thoughts and energy and praying for the blessing of complete healing.  ...Islandgirl
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline JillLynn

  • Member
  • Posts: 205
  • contracted 1973/ peg/rib 1999 & 2004/on harvoni
Re: Hep C returned
« Reply #14 on: February 13, 2015, 12:57:33 pm »
so sorry to hear the news Rick and Brad.....having heard it twice myself I know how disappointing the news is first hand.

I got my post treatment 4 week blood test today and sure hope I'm still virus free.........but if I'm not, will try again for sure.

Harvoni was not bad......so if I need to stay on it for 24 weeks instead of 12 I will. 

MAN this is a buggar of a virus to say the least.    Love you Brad and Rick........I know you will both keep fighting the good fight!

Jill

Offline yag1064

  • Member
  • Posts: 58
  • Enjoy the life you have.
Re: Hep C returned
« Reply #15 on: February 13, 2015, 04:11:50 pm »
 Thank You Jill for your kind words. I feel much better. I have come back to living with the virus and trying to keep myself in a good place, both mentally and physically, without becoming neurotic.
I have been referred to a Hep specialist and Harvoni has been discussed. My GI said that he would like me to see the specialist before starting any treatment, but my appointment isn't until July. I guess no one has the same view of time as I do.

   That's Life,

   Love you all
      Rick
   
Tested positive 2007
Non respond-er to treatment 16wk of 48wk
Started I/R/Sol May 2014
Hep C returned as of Jan 2015
Started Harvoni Sep 16, 2015
1st Test V/L:20
2nd Test V/L: undetectable
Dec 2015 EOT V/L undetectable
12 wk SVR :undetectable  Mar 25,2016
24 wk SVR: undetectable  Jun 24,2016
52 wk SVR undetectable   Dec 16,2016   -- I,m past it!!!
Shambhala

Offline Mike

  • Member
  • Posts: 999
Re: Hep C returned
« Reply #16 on: February 13, 2015, 04:13:55 pm »
Hi Rick,

What genotype are you? I'd like to research some of the treatment options for you.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline yag1064

  • Member
  • Posts: 58
  • Enjoy the life you have.
Re: Hep C returned
« Reply #17 on: February 13, 2015, 05:51:45 pm »
Hi Mike I am genome type 1. I wasn't told of any suffix like a,b,...

Hope you find something.

Rick
Tested positive 2007
Non respond-er to treatment 16wk of 48wk
Started I/R/Sol May 2014
Hep C returned as of Jan 2015
Started Harvoni Sep 16, 2015
1st Test V/L:20
2nd Test V/L: undetectable
Dec 2015 EOT V/L undetectable
12 wk SVR :undetectable  Mar 25,2016
24 wk SVR: undetectable  Jun 24,2016
52 wk SVR undetectable   Dec 16,2016   -- I,m past it!!!
Shambhala

Offline badbradley

  • Member
  • Posts: 294
Re: Hep C returned
« Reply #18 on: February 14, 2015, 09:30:57 am »
Jill,    Islandgirl,
                       Healing vibes are so much appreciated.  I hope the Harvoni is the silver bullet for both of you and everyone else on it. With the high success rates of these new meds it is likely for most everyone to clear. But for us that fail, there are more enemy's to this virus coming out of the woodwork!!  We will be cured.

Rick
           It really, really sucks that you were clear 6wks post treatment and 6mths post Detected! Again - that really, really sucks!!!  I am disappointed with some aspects of my care. Like you my geno type wasn't accurately determined to be 1a or 1b. That is a red flag to me! There are other issues of concern regarding my treatment but I am not going to point fingers. It is what it is now and so back down to the bottom of the hill. I hope we don't have to wait for our livers to finish frying before treating again!!  The insurance battle is worrying to me. But I remain optimistic and am preparing for the next round. Best of luck to you and to all!
                                                                                               Brad

       
Geno 1a
Sov/Oly 12wks - relapse
Har/Riba 12wks
Alt-16  Ast-17 SVR - 12
Alt-15  Ast-14 SVR - 24

Offline Islandgirl

  • Member
  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Hep C returned
« Reply #19 on: February 14, 2015, 09:59:50 am »
Brad, I was scared to death about the insurance as I knew my co's co-pay was out of reach for me.  However, my doc uses TLC, Rx as the specialty pharmacy and they helped me get a grant to help pay the co-pay from a company that works with people who have certain life threatening diseases - Hep C is on their list.  A counselor told me that help can be found and that you should never have to pay the full price for these astronomically priced drugs. Try looking up tlcrxpharmacy.com and Patient Access Network Foundation.  Evidently, there are other avenues of help out there, you just have to keep asking questions to find one that can/will work for you/your area of country/insurance/etc.  Starting with questions to the specialty pharmacy seems to be key in finding help?

Rick, good luck with the specialist!  I hope they find some answers and a good plan for you soon.  Did you ask to be kept on a "cancellation list" for a sooner appointment?  Just a thought. 

Keep the faith and keep looking for that silver bullet, guys!  Keep us posted and know that we're in your corner :)  ...Islandgirl
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline Lynn K

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  • Member
  • Posts: 4,545
  • Get tested, get treated, get cured, fight Hep c!
Re: Hep C returned
« Reply #20 on: February 14, 2015, 02:02:06 pm »
And Giliad has the copay coupon for those who qualify pay no more than $5 a bottle is what I am paying per script of Harvoni
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

 


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