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Author Topic: too early to be despondent?  (Read 6778 times)

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Offline dixiebelle

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  • Posts: 11
too early to be despondent?
« on: August 04, 2017, 10:28:54 am »
Hi all- Am on week 11 of viekira pak and ribavirin, and am bit down, just got my 8 week tests back and am still at <12, same as 4 weeks. Is it too early to be despondent? I was so optimistic after joining this forum and seeing how many people were un-detected after 4 weeks, and I've felt ok on the treatment so was sure it was working. I already failed a round of interferon/ribavirin 9 years ago and am pretty gutted to think this might not be successful too. I know <12 is good but had my heart set on undetected. Any thoughts/advice/experiences be appreciated, be honest. Has it not worked?

Offline gnatcatcher

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  • Posts: 1,372
Re: too early to be despondent?
« Reply #1 on: August 04, 2017, 01:00:07 pm »
To answer your question, yes, it is too early. There have been people here (e.g., dragonslayer/Paul) in whom the hep C was still detected at the end of treatment, but they went on to clear the virus without any further treatment and remain cured.

It's natural to feel down, and having to take riba at all let alone a second time is no picnic, but the good news is that even those who don't reach undetected with one of the DAA combos are able to get cured after resistance testing is performed and a suitable new drug is chosen. dragonslayer was on early this morning to post about one such new drug.

Wishing you well,

Gnatty
« Last Edit: August 04, 2017, 01:07:37 pm by gnatcatcher »
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 dragonslayer

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  • Posts: 873
Re: too early to be despondent?
« Reply #2 on: August 04, 2017, 02:55:49 pm »
Dixie, dont despair.. As Gnatty said, I was still detected even at 8 wks POST treatment!   And still went on to undetected 3.5 wks later.  Happened to others also.  There's a reason why 12 wks post treatment, and not End Of Treatment, is the marker used for SVR...  Hang in there. Odds are big time in your favor.
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 dixiebelle

  • Member
  • Posts: 11
Re: too early to be despondent?
« Reply #3 on: August 04, 2017, 04:25:19 pm »
Ah thanks so much guys-I just needed a bit of a pep talk there. Just like everyone else I feel I have a lot riding on this. I see what my doc says at my 12 wk check and look through the posts and find that relevant info. TO ANYONE READING THIS WHO'S JUST STARTED OR CONSIDERING TREATMENT: Do not let me/this put you off, I still feel it's worth doing. The treatment was really not too bad at all, there were days when I felt better than I had in years and am down to under 12 which is practically nothing!
 Thanks again for the support,fingers crossed!

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: too early to be despondent?
« Reply #4 on: August 04, 2017, 10:52:30 pm »
Hi Dixie

The test likely has less than 12 as minimum detectable level. Are there any words following that in the result like detected or not detected?

My result says <15 (LLOQ for my test) and also not detected.

So just curious if there are any additional words as part of your result

Hang in there. As Paul and a couple others have had happen the only result that counts is the 12 week post treatment result. All on treatment testing is just noise.

Good luck
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 dixiebelle

  • Member
  • Posts: 11
Re: too early to be despondent?
« Reply #5 on: August 06, 2017, 04:37:49 am »
hi Lynn- I just phoned in for the results so didn't see. But am pretty sure it didn't say undetected after as when she said <12, I said "shit I was really hoping to come back undetected by now" and she just said it's to early to give up. Am going in for my 12 week check a week on tuesday do I'll get more info and I'll let you know what I find out then. It's just this is what happened to me on treatment before-I did well, got my VL down but not enough to effect a cure. So it's just all starting to feel a bit familiar. At least this has been a much easier treatment and have not had the complete physical collapse that I had with the interferon/ribavirin! thanks

Offline dragonslayer

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  • Posts: 873
Re: too early to be despondent?
« Reply #6 on: August 06, 2017, 09:19:18 am »
Hi Dixie,  you really cant compare your earlier experience with Interferon with current DAAs..  Aside from the fact that Interferon treatment success rates were generally around 50% give or take, and modern day success rates approach the upper 90% arena, they work completely differently.  At the end of Interferon treatment, if you had a viral load, you pretty much failed.   As a very non scientific description, Interferon boosted the body's immune system to combat the virus... Modern DAAs, however, directly interfere with the virus'  ability to replicate. HCV cant survive without replicating.   One characteristic of the DAAs is that on-treatment or EOT testing has been deemed not probative, and is why 12 wks post treatment is the only test that matters for most people.

So, "It's just this is what happened to me on treatment before-I did well, got my VL down but not enough to effect a cure" is not a statement you can use to explain your current experience.   HCV tends to replicate rapidly.  The fact that your count is too low to be quantifiable at this stage is just what youd want to see.  Check back in after treatment... Youre not even through your treatment yet.. Hell, I was +29 at EOT (where I too mistakenly thought I had failed), and even at 8 wks post treatment I was still Detected, althought the count had gone down below quantifiable, like you.. And only at 12 wks post treatment did I first reach the holy grail of Undetected.

Hang in there. Your prior failure cant be used to compare to your current treatment!
« Last Edit: August 06, 2017, 09:43:00 am by dragonslayer »
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 Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: too early to be despondent?
« Reply #7 on: August 07, 2017, 02:49:01 am »
Hi Dixie

Just to add I treated 3 times with interferon based treatments and was a null responder. Not only did my viral load not decrease it actually increased slightly while I was on treatment with interferon and ribavirin. After my 3rd treatment failure there was nothing I could do but wait as my fibrosis score went higher with each liver biopsy finally reaching F4 in Jan 2008.

Shortly after I was dx with cirrhosis Incivek was approved but my doctor would not allow me to treat asmy odds of success were so low and there were much greater odds I could go into liver failure from another treatment with interferon, ribavirin and Incevik.

Finally, in late 2013 when Sovaldi and Olysio were approved, I started treatment in March 2014 for 12 weeks after fighting with my insurance for an off label usage of the 2 drugs together. My viral load was not detected at 4 weeks on treatment and at end of treatment. I was ecstatic never before had my viral load ever reduced. But 12 weeks later when I retested I was found to have relapsed with my viral load right back up to 2 million plus. Needless to say I was devastated.

Then in October 2014 when Harvoni was approved after a new fight with my insurance I started treatment again but this time with Harvoni for 24 weeks and ribavirin which we added later for 15 of those 24 weeks. This time the treatment worked and I remain cured now over 2 years since I finished this last treatment of 5 in May 2015.

My point being I was genotype 1a who was a multiple treatment failure with long standing cirrhosis putting me in the hardest to cure category.

If I can be cured you will be too.

Keep the faith and hang in there

Best wishes
« Last Edit: August 07, 2017, 02:53:02 am 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!

 


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