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Post Info TOPIC: Test Results Appreciate Input


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Regarding the Insurance Review Board. One problem I see is they will be faced with 24 weeks of Harvoini = RBV or 16 weeks of this far less expensive alternative and you know how that goes.



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Tig I believe the documentation is the same I posted below with the attachments.

Those are considered recent tests related to the RAV's.

Is that what you are looking for?

"I know what Malcolm's thought was on this." Well that sounds a bit ominous coming from Down Under.



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."

Tig


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I know what Malcolm's thought was on this. Can you put together your documentation on your existing RAV's or demand they be tested for in advance of treatment with Zepatier and have a sit down with the good doc? There is also the possibility that your insurance review board may see a question and bring that up before approval. No stupid questions here. We're here to try and see to it that each of you goes into treatment with the knowledge necessary to succeed!



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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How does this apply to me?

 

"Treatment-naïve or PegIFN/RBV-experienced WITH baseline NS5A polymorphisms: elbasvir/grazoprevir plus weight-based ribavirin for 16 wk"

This may be a stupid question but hey, ya know? no



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Geeze seems like no sooner than released my Doc is on it but I am still confused as to how it applies to my situation.

I don't have kidney problems renal whichamacallits or any of that. Never took interferon.

All I know is I did the VPak, thing failed miserably and now have a train ticket that no one else is on. It gets lonely on a big ole empty train ya know?

noIdiot I tell ya.



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."

Tig


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Interesting information here too:

Zepatier (Graz/Elb w/wo Riba)



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Here's some information I received today via Hepatitis Central's latest newsletter:

FDA OKs Mercks Zepatier (Grazoprevir/Elbasvir) to Treat Hep C



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Tig


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If you haven't seen Jill's recent addition, here it is. I'll find you some additional data as we go forward. 

Zepatier



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Greetings,

Well I just got notified by my Doctor that he has made his decision and placed an Order.

Zepatier with RBV for 16 weeks.

Well I did not see that one coming and am caught a little under informed now. Not crazy about RBV again but no big deal I guess. Not real up on the Z thingamabob.

He said in that I take Omeprozol he prefers this one to Harvoni for 24 with RBV.

Input welcome if y'all know about the Z thing.

Man I was thinking the last one started with a V and this one with a Z, I am running out of alphabet here!

no Jimmy Jimmy Jimmy... will you ever stop being a clown?

No. LOL

Thanks y'all!

 

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Thanks Tig I do believe I have a viable way now of posting all results.

 

Cool!



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Ok thanks again to Matt. I read this and downloaded the PDF. If approved that should happen by roughly June.

From what I see and how I interpret it, neither of the drugs have a predicted resistance in my case, and therefore would have a better shot than the resistance to Ledipasvir, of which Harvoni contains, which would apply to M28T, of which weak as it may be I have.

Whew I may have wrote all that but ran out a breath reading it.  LOL

I believe based on my Fibro score along with a 250 platelet count, I am in good enough shape to hold for this new drug combo. In particular also, is I believe I can do so without the VibroMonster and also in 12 weeks as opposed to 24 on the Harvoni.

Hmmmm I am beginning to like the potential option here.

Would appreciate feedback. Do I hold or jump on the HarvoniVibroMoster Train for 24 weeks which I also may point out I would still be on and kind of pissed off when the new drugs are released.

wink

 

JimmyK

 



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."

Tig


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Hey Jimmy,

They posted perfectly! I was able to view them clearly.



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Thanks Matt I appreciate it.

Now in particular because I hope to be able to upload redacted test results in particular as the Lil Woman progresses I am going to attach some files related to my most recent tests in order to determine if the format works.

See attached...these are the 12/30/15 results. Hope this works.

 



Attachments
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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Hey Jimmy

Gilead filed for a NDA on Oct 28, 2015 (see link below)

http://ipsite.org/3d2g

If it takes the same path of time that "Harvoni" took, it's generally 6-8 months from the time of its filing until it gets FDA approval for selling and prescribing.

What ever protocol you decide on IMO make sure its contains Sofosbuvir as its main drug.

matt 

 

[edited - shortened URL]



-- Edited by wmlj1960 on Thursday 4th of February 2016 02:46:40 AM

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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 



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Wow guys I thank you all for the valuable feedback. Each of you are what makes this group a "Family".

Matt with regard to the new dual combo to be potentially released in May, do you have further details? I am getting confused on which are which in thatthere seems to be so much recent activity with regard to trials.

 

Thanks!

 

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Hey Jimmy

In concur with Malcolm, Gilead's new combo drug will likely be approved this May if the FDA follows through with fast tracking it.

IMO, go with the best / newest 2nd generation NS5 DAA that you can get.

matt

 



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 



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Thanks Tig.

Jimmy, I forgot to mention your NS-3 RAVs. Q80K occurs naturally in ~50% of USA Genotype 1a patients. It is only important if Olysio is being used. D168Y is a common RAV produced by Paritaprevir. It has 219-fold resistance to this drug (Aviator Trial). It also confers resistance to other PI's, so I'd give Zepatier a miss.

M28T has ~9000 fold resistance to Ombitasvir. IMHO, this is the least effective NS-5A inhibitor.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm



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Jimmy,

You're lucky. RAV M28T at the NS-5A site is not a big deal. It is found at baseline in 2% of Geno 1a Rx-experienced patients.

It increases the resistance to Ledipasvir by a factor of 2.5-100.

Given that, your chances of SVR with Harvoni are ~91% (according to Gilead). Here's a reference:

http://ipsite.org/3czq

I would want better odds, so I'd wait for Sovaldi/Velpatasvir. Cheers.

 

Reduced the URL...



-- Edited by Tig56 on Wednesday 3rd of February 2016 01:00:13 AM



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm



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Hi Ya CG! Great to hear from you.

 

Options is a thing I believe everyone with the breath of Life has. When I think of them in those terms, it simply keeps me grateful for today.

Warm Regards to you my friend.

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Hi Jimmy, you`ve got a great attitude, and I love the banter between you and your doctor!

You have options which is the main thing, and also you have time to wait, you don`t need to rush into a decision right now.   If you`re in a hurry to get on with finishing off that pesky little lizard then you could go with Harvoni, even though as you said, you`d probably need to do Riba with it, or you could hang on and wait. 

Whichever option you go for I`m sure it will work out next time...  smile



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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Thanks much Bubble, I appreciate the words of encouragement.

I like to have fun is all and that may be what makes mine interesting. Shoot, putting our head on straight is always the first thing to do if taking any forward step.

This morning I was very attentive to the Doctor and kind of let him do his thing. When he got to the point of hanging up the phone from a Manager in the Houston Research Department this morning he looked at me and stated that they were not recruiting at this time for the 3 drug trial. Without batting an eye I said, "Yes that is true. This is Houston and the only ones here in Texas recruiting are in San Antonio and Clear lake."

LOL man he turned around and looked at me for about 3 seconds. (sorry but I have a habit of counting response time, one thousand one, one thousand two.. LOL) and then he kind of smiled and said, "Those guys in San Antonio get all the good stuff." So I had to be me and responded with, "Tell that to Davy Crockett." 

We broke some good ground with that and I said he was free to play with me some, but Carolyn is 100% by the book. Her first is my only demand. He was cool with that and so am I.

Things are going to work out as they should and it is an adventure to be one of the many pioneers those ahead of us can one day hold a special place in their hearts for.

It's all good. smile

 

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Jimmy: Your numbers remain very good. You have turned it into a lizard. I still think that your former treatment helped. My interferon days knocked my numbers way down. And stayed down to when I was treated the second time. The ALT+AST is showing sustained. Mine were almost 3 figures!  Your only F2. You have good insurance. They cant deny you at all. I would do it if I relapsed - right away. Why stress out again? You will be amazed at just when that lizard stumbles and dies this time. After 8 months off treatment, the Riba has calmed down in my system. Be carefull with it. Hang tuff and go for another round. My next step would be to go to Harvoni my Doc said, but he has not seen any relapsers yet..Will be watching and waiting to hear from you. You are an interesting case. Just my 2 cents.



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60 yrs. Geno1b 2001. 9mil. VL. �Failed Post Riba/Peg tx. 2006 46 weeks. Diagnosed 1A 2015(?) F3 fibr. 225k VL. Vikera/Riba 12 weeks 3/20/2015. "Undetected" start to finish. Undetected 1yr post tx.



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Hey y'all, hope things are rolling well for each of your.

Ok just in from seeing the Doctor. First my results regarding Resistance, then thoughts.

NS5A

Mutation Detected: M28T

NS3

Mutation Detected Q80K, D168Y

xxxxx

My understanding is the NS3 mutations are fairly non issue. The NS5A is the area to focus on. Harvoni contains Ledipasvir but the Doctor seems to feel the M28T mutation is of minor significance compared to others that they were concerned with.

He feels I have two options.

1) Wait for the triple drug combo to be released that contains the inhibitor. (He said six months but I know better and it is closer to one year. I did not tell him I knew better, but..)

2) Make an attempt at Harvoni for 24 weeks possibly with Ribovirin.

He said if it were him he would likely wait in that Harvoni is expensive and I am in not too bad of shape. The expense really is not an issue as I do have pretty good insurance an copay is like $5 a month.

I told him in my mind I was thinking more on the lines of going with the Harvoni and could care less about adding Ribovirin or not and had no issues taking the stuff again. Not fun but so what? I then mentioned if I were to fail on Harvoini I would likely be sent next year to the triple drug anyway and he agreed.

So I am leaning toward Harvoini and Ribamonster for 24 weeks with the thought there is a good shot it would work. The key of course would be the SVR12 after. If I fail again, by that time I would present a good case to study and get fairly good attention.

He also is looking at a Merc Study he said was finalized last Thursday but I know nothing about that.

Those that have the knowledge base here, what do you think about Harvoni in my case?

As always I appreciate your thoughts.

 

JimmyK

 

 

 

 



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Hiya Tig!

 

Not the slightest bit of worry here. The VL by the way is 0.8 of what I started at so The Dragon is Limping and His Breath has a chill to it now. By comparison, he is a mere lizard. Poor lil fella.



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."

Tig


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Hey Jimmy,

Not to worry buddy, you've got time to set up the next tactical assault against that Dragon! Don't place much thought on the viral load because it can vary greatly and is not indicative of SVR success rates. We can meet at HQ and get our battle plans in order whenever you're ready. Next time the beast goes down....

image.png



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Hey y'all have some updates;

HCV RNA Real Time PCR = 345306

Fibrosis Score is 0.49 or F2

Necroinflammat ACT Score = 0.21

Necroinflammat ACT Grade =A0-A1

Alpha 2 Macro-globulin 280

Haptoglobin= 79

Aploipoprotine A1= 118

Total Bilirubin = 0.4

GGT = 17

ALT = 33

So with that in mind personally I believe I have time to stalk the Dragon a bit and then tear him up next time.

 

Thanks!

 

JimmyK

 

 



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Hey Jimmy

Sorry to read about your relapse on the Abbvie HCV drugs, I relapsed on this quad protocol also but a year and half later started Harvoni and Ribavirin for 24 weeks and now have achieved SVR-24, so your future has not been wrote yet. By the time you will be ready to  treat again Gilead Science will have released there newer, better version of Harvoni.

It good to see that your Docs. are up to date on providing you with tests at both NS3/4 and the NS5 addresses for RAV's. BTW their are some Gilead sponsored HCV trials for any patients that have failed any DAA's protocol if you wish to speed up your treatment duration.

Hoping all turns out well In your future treatments.

matt



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 



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That wonderful positive attitude will not only help you but will help your wife a lot too.

Wishing you the very best going forward.

 

Linux



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63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 



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Hey all.

 

Well I glanced through a bit of the RAV's at the 5A thread and decided it is a bit to soon to try and take that in. I figured I still have a treatment excuse of brain fog so I think I will just use that and pass for now. LOL

I don not believe treatment is currently urgent and I have lived with this thing for roughly 40 years. I am patient and things will work out as they should and do so in their proper time.  )

 

JimmyK

 



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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 With your attitude you cannot fail to succeed in kickin' that dragon's a**. It's a bummer that you relapsed but as a result you will now have proper attention to your case and you are also now better armed with the facts to make sure that proper attention is given. And you'll be on a more effective, easier to tolerate protocol next time too. And another big advantage is you'll be able to keep spending time with all of us here on the forum and keep posting in the 'On Treatment' section. biggrin j/k

 Seriously, you obviously have the attitude to get this mission done and move on. It's people like you who I look at on those days when I want to wallow in self pity and blame everything on someone else. I'm glad to have you as part of this forum and look forward to continuing to follow your progress as you get this Hep C conquered. Carry on Jimmy! smile



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Your outlook, attitude and humor will help get you through this Jimmy. I remember them telling me to cease treatment before and the feelings that came up for me. You are handling it loads better than the mad little girl I was back then. I love your comment, just have to change trains. A fork in the road



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 

Tig


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Hi Jimmy,

Bummer....  We were all hoping, but not surprised with the news. Sorry buddy. I like your style and attitude, that will help get you through this disappointment and turn it into a success story in the end! I'm glad you're with us, you know we're here for you...

Malcolm provided some useful info on RAV's at the 5A site on a recent thread, among other things. There are some useful links throughout the thread. You should also enter RAV into our search function, there's some additional discussions available.

http://hepcfriends.activeboard.com/t59321988/ravs-at-the-ns-5a-site/



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Best of luck to you.

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64 year old EOT 10-28-15,SVR24 April 21 2016  ALT-12/AST-23 June '19 - fibroscan 6.9 F-0 July '19



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I am so sorry you got this news, but your attitude is amazing.  Your blessings will come, prayers for you and your wife.



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GT 2, DX 10/2007, BX stage 0/1; grade 0/1... treatment-naive

11/2014 fibroscan F1-F2 (8.2)

Pretreatment VL 1.9 million

Start Sovaldi + Riba 11/23/15

Undetected  at 4 weeks tx

12 week post treatment results. CURED !



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Greetings Y'all.

Back from the Medical Center and it is official now that I have failed treatment with Viekera Pak with a total of 8 days and one evening remaining of a 12 week regement they have instructed me to cease any further use of the remaining drugs.

The Doctor has ordered the following for tomorrow morning;

Hepatitis C viral RNA NS3 drug resistant testing Quest 90924

Hepatitis C viral RNA NS5A drug resistant testing Quest 92447

I also told them while they were at it I wanted a Fibro Sure so also on the order is;

Fibrosure for Liver Staging Quest 92688

The Online MyChart will continue to be a source of communication but I have been asked to simply use the Doctors Direct Line which will ensure nothing gets missed. He asked me not to give that number out.

My understanding of the Resistance Tests is to specifically target the NS3 and NS%A thingamabob that is part of Viekera. This would then be used to target the appropriate protocol that may not include Harvoni or certain other options.

One thing about failing is I have now become his project and the attention to both my wife and myself will be increased. Some of these places become routine cattle movement that is effective for a mass of people. I have no problem having failed as somehow this will also be good for the treatment plan my wife gets on.

I will take whatever they toss my way as I feel a bit more secure that I am JimmyK and not a number. I kind of like it when a Doctor goes all Geek on you because he finds you an interesting case.

I will try and locate someplace that may be able to use the unopened week supply of this stuff. No private parties No Exceptions. But if there is a certified Hospital or Organization that is helping the less fortunate I am happy to mail to them. I will have to discard the remaining Ribo as it is opened. I was thinking about shooting it out of a cannon but it occurred to me I don't have one.  LOL

I am looking forward to dropping some of the side affects.

No big deal. Just need to change trains to the ultimate destination is all.

I appreciate all you folks here do.

 

Regards

 

JimmyK

 

 

 

 



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

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Good Morning Y'all!

Lots of good information and I greatly appreciate each of you.

I tend to agree that there has been a breakthrough and do so simply due to the week 4 to week 8 rise.

I am going to the Medical Center this morning to take the lil woman to her Fibro Scan. While she is in there I am hand walking my results to my Doctors Office across the street in that I am not certain as yet if they have them in hand. I will attach a note asking that they confirm STOP of GO with regard to the remaining meds. I will be specific as I can questioning the wisdom of continuing the production of RAV's.

Whatever they say I will of course follow.

Once treatment stops I will do all I can to prepare for he new regiment that I suspect would begin sometime in the April/May time frame.

I look at it this way. If the battle had been a walk in the park I would feel kind of like a Bully beating the soup out of the Dragon. In that he seems to be a bit on the stubborn side, he gets both barrels from me now. LOL

I do know that my new Insurance is Harvoni all the way as it's preference so no worries here. Instead I pray for those not as blessed as my wife and myself to have such a great opportunity before us. It is those less fortunate that reside in my prayers.

Well talk to y'all when I get back.

Thanks much!

 

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

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Hi JimmyK,

Sorry to read the news. Just my 2c...........

Guys, a rise in VL from 115 at week 4, to 345K at week 8 is breakthough(relapse) full-stop.

Treatment should stop. There will be RAVs, probably to Ombitasvir, so why increase the production? These RAVs also affect Ledipasvir, so let them start to die off.

I do agree that not obtaining fibrosis assessment prior to treatment is a mistake. With the USA so keen on FibroSure, I suspect many patients are not being staged correctly. Patients should demand a FibroScan or biopsy.

When you get your fibrosis stage, you can decide whether to wait for a more potent NS-5A inhibitor. GS-5816 should be available in 2016.

Best of luck.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm



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 Tig is right Jimmy. You have not relapsed until EOT+12 VL result says so. And if you in fact relapse then it's good that it is the result of VPak since you still have more effective Harvoni as plan B. For me, having Harvoni without Ribavirin as plan B made my Sov / Riba relapse last year seem like no big deal, just a delay before SVR.

 Right now just concentrate on the next correct move which is to finish that 9 days and 1 evening of meds and be at your appointment on January 6.

 I'm surprised your insurance didn't require a test to determine your fibrosis stage. Medicare required me to be tested before approving Harvoni even after they had just got through paying for 24 weeks Sov/Riba 6 months before. I'm also surprised they didn't do pre-treatment labs in October when your latest labs before then were January.

 One good thing is that as a result of your participation on this forum and now being armed with more knowledge about what needs to be done with your treatment, you can be your own advocate when dealing with your doctor in the future. I've found that doing so can be beneficial especially when dealing with a large, world renown high volume treatment provider like St Luke's at the Medical Center complex in Downtown Houston. My treatment provider is the same, they have all the best, latest technology etc. but details sometimes get overlooked due to high patient volume and if I don't catch it, it doesn't get caught.

 Hang in there Jimmy. We've still got some dragon killin' to do. smile

 



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Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Many thanks Tig.

No problem on the news. It's a Dragon. Whooping a Dragon is pretty cool actually and he is going down.

Wife does the Fibro Scan in the morning. I will be asking to see my results so I know my F number. They will then kind of get nervous when they realize they never did one. I think I can properly make my request at that time.  I will practice facial expressions in the mirror LOL

Next year The Rooster is going on the tree. It is simple as that. Too late this year anyway.  biggrin

 

JimmyK

 

 



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."

Tig


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Hi Jimmy,

I'm sorry to hear this latest bit of news. The first thing would be to request a repeat viral load, just to confirm the numbers. The thing to note Jimmy, is that this isn't over until the EOT +12 viral load comes up detected. We've seen it happen on a number of occasions and many doctors aren't even testing until that point of treatment. Marsha (Coolheat) was on Harvoni and had the same bit of news at EOT, but her enzymes were WNL. Her doctor/nurse told her she had relapsed before the EOT +12 testing. Very premature conclusion on their part, because as we suspected, she was just delayed and got the great news of SVR12 following the EOT +12 viral load.

Your labs are fine, aside from the viral load. Your RBC, Hgb and HCT are dropping because of the Ribavirin, it's totally normal to see that occur. Your platelets are great! People with cirrhosis and advanced fibrosis see lower numbers. I'm curious what they'll be in another two weeks. If those other numbers were elevating, instead of dropping, I'd be more inclined to confirm relapse. Riba doesn't necessarily cause low platelet counts, but does impact the others every time. 

Do your best to stay upbeat. If you can get started on Harvoni or one of the Sovaldi backboned treatments in the near future, you've got no problems when dealing with RAV's from the VPak protocol. I would also request (demand) a Fibroscan, not a Fibrosure. I don't think they're as accurate as they need to be. I'm amazed that you were approved for treatment without a fibrosis staging. That's almost unheard of in this day and age of high dollar treatment. Has your wife been asked to have that done yet? You guy's really need to have that information and I'm more than surprised that it wasn't required by your insurance carrier. Strange stuff...

If this turns out to be true, don't worry about your prospects of a cure. You will have this handled in short order, that I'm sure of. Many of us relapsed or didn't respond, yet came back fighting and won. So will you! One thing at a time, this certainly isn't over yet, not by a long shot. Stay compliant and don't quit believing. It ain't over til it's over. Fortunately, you have plan B ready to consider if necessary. Hang in there buddy...



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Hi Gracie,

 

They never have done a FibroSure/Scan. Platelets were too strong I guess. I will be asking about that Jan 6th. I sense a series of missteps have taken place in 2015.

For one thing, all the tests I did do initially before treatment were in Jan of 2015, but I did not start treatment until October of 2015. Kind of smell a rat on that one as well as no testing in between.

Strange thing is I get treated at St Luke's at the Medical Center complex in Downtown Houston. That entire complex is world renown and folks from all over fly into Houston for various treatment options such as at MD Anderson, The Methodist Hospital, and a whole bunch of Saint so and so's. 

I think I am just kind of lucky I guess. cry

 

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Yes, harvoni could possibly in your future, and it should do the trick. Did you have a Fibroscan done? What stage are you at?  

Breakthrough is rare but it happens. I had a breakthrough on the incevik. Once those nasty RAVs take hold, they win the fight. Harvoni mops up most of those Ravs so it should work for you if you do relapse officially which you'll find out 4 weeks past treatment I believe. 

The fight continues and you'll be the victor!!!



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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.



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Hi Steve,

 

Thanks and no worries about any confusion.

I am on Viekera Pak and RiboVirin.

12 week course of which I have 9 days and 1 evening remaining.

The VL reading of 115 was taken roughly at the 4 1/2 week mark and at that point UND was the expectation. That was drawn on 11/17.

The VL reading of 345306 was taken a month later on 12/15.

The ALT reading on 11/17 was 52 and the AST was 37. So even though the VL went up on 12/15, ALT came down to 37 and AST to 35.

I called the Hep Nurse and she advised I continue the remainder of the treatment which is scheduled to be completed on 01/06/16 at which time I also have an appointment to see them.

I do believe I will see Harvoni in 2016 and the good news is I also have a new Insurance (CVS/CareMark) that insists it as the treatment of choice (preferred.) Duration and any side drugs will be interesting I guess but The Dragon goes down, not me.

The Dragon continues to breathe but so do I and no way any glorified lizard is going to beat JimmyK.

 

Thanks again!



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

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Hello,

Just saw this, sorry for the disappointing news.  Let me clarify a few things.

1.  I am assuming the 115 VL is from the 4 week blood test.  That shows a perfectly fine response,  contrary to popular belief  just as many clear in the 1st 4 weeks as those who don't.  Look at the studies.  The drug was working up to this point.

2.  I am assuming the the 345306 VL is 8 weeks.  This is more than unusual on treatment this is freakingly rare.  The studies I have seen did not have breakthroughs unless their were non compliance issues (missing pills,etc,etc.)  Even then breakthroughs are almost unheard of. 

3. Your ALT and AST #seem to be in the high normal range, are those results in the normal range for your lab? 

4.  This is critical, if you had a breakthrough you need to stop treatment!  With your doctors blessing of course, talk to them immediately!  Consider donating your 2 weeks left of Harvoni as well. 

Sorry, hopefully something is amiss here, never frigging heard of this before, especially with compliance, which I am assuming you were(not missing doses or taking contraindicated drugs).

 

OOOPS I see you are not on Harvoni!  Not sure how the DAA you are on works,  I am assuming the same.  Someone else better chime in.  The information I posted is related to Harvoni.

 

So sorry, possibly Harvoni is what you need.










-- Edited by Steve76 on Monday 28th of December 2015 08:14:29 PM

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Greetings,

I have some rather disappointing news to share.

As you know, my results for the test taken 11/17/15 did not produce a finding of UND, but remained high at a total of 115. Down from close to 4m a significant drop but not what I was looking for.

I finally today drove down to to get my most recent results today due to the mess up of the one Dr faxing to the my Hep Doc.

Results from test taken 12/15/15 in hand.

HCV RNA Real Time PCR = 345306

RBC is dropping to 4.07

HGB is dropping now at 12.7

HCT is dropping now at 38.9

Platelets remain strong at 350 (Whew)

ALT is at 37

AST is at 35 so at least liver has gotten some rest during this fiasco.

I am not sure if my Hep Doc has seen it yet due to the Fax problems but I did alert them through the Chart reporting system they have.

For the past two weeks side affects have become pronounced to a degree that is just at the tolerable level if you don't mind feeling completely awful.

I have a lousy 9 days and a nightcap remaining on a 12 week course, and personally I believe I have failed treatment. I imagine they will put me on a different regiment and I know that success is down the road some, but it will come in it's proper season.

I will probably post on the train the same thing. Kind of messed up right now but I will get up.

 

Regards

 

JimmyK

 

 



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

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looking back waiting to get the VL tests results was a really stressfull time. my heart used to be in my mouth for a few days prior to getting results.but ive said it before the surprise now is if some one does'nt clear the virus.i think the dragon has had its day and good riddance to it vile monster that it was



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 william.61 yo.lives in uk.geno 1b.started sol/dac/riba sept 2014 12wks.am now svr and now had liver transplant on 19/07/ 16



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Hiya Mike.

 

That is absolutely the only reason I posted about our encounter on the phone. It is incredibly important to equip oneself properly before ANY fight.

All my best.

 

Jimmy



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

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 That's a good example of an important reason to educate ourselves about our treatment and be our own advocate. It's a good thing you are aware of what's going on with your treatment Jimmy and have an alternate place to ask questions other than your doctors office. A lot of healthcare workers are ignorant to HCV specific issues and many more make too many mistakes for various reasons.

Keep up the good work Jimmy. The medicine is working, just stay compliant, stay adequately hydrated and take care of your body. 4 weeks more then you'll be good-to-go. smile



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Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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LOL thanks Tig but no  LOL.

 

I mean by lemon the nurse I got !  Ha ha. No worries here I don't think she has a flare for reading and that tends to go hand in hand with comprehension.

Also when she made her comment she said I was supposed to be "negative" by now. When she said that I asked, "you mean undetected?" She kind of sounded puzzled so who knows, perhaps I am her first Rodeo.  LOL

God Bless her anyway ;)

 

Jimmy

 

 



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."

Tig


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Jimmy,

By "lemon", if you mean there's something wrong, then no. I stand by what I said previously. You had an enormous viral load reduction and I have no doubt that you'll be undetected on your next test. Our member Marsha as still detected at EOT, but the rest of her values were stellar and was SVR at EOT +12. That's the way these drugs work. They knock the viral load down to a level that allows your own immune system to take over. Don't sweat it, you're going to beat it! Stay positive... smile



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