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Hep C Discussion Forum -> On Treatment -> NEW TREATMENT - NO INTERFERON - RIBAVIRIN
Post Info TOPIC: NEW TREATMENT - NO INTERFERON - RIBAVIRIN
mallani


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RE: NEW TREATMENT - NO INTERFERON - RIBAVIRIN
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To say that our Forum Members on trials are taking 'rat drugs' is too much for me . I am closing this thread.



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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
Caryn


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Marilyn,

I think that you need to understand that there are a lot of people who cannot wait until the issue is resolved between the drug companies, if that ever even happens. I would love more than anything to be able to wait for a treatment that is 100% effective with little or no side effects as would anyone on this forum. Almost every day there is information posted here about different treatments in the pipeline and I have certainly seen the petition you are referring to on here several times and many members have posted that they have signed.  I would be safe in saying that NO ONE on this forum would have an issue with signing the petition, but have no choice but to begin treatment now. 



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1a, CT. Incivek triple 1/2013, vl 810 @ 2 weeks, 610 @ 4 weeks, 3000 @ 8 weeks, tx stopped. 

4/2014 - tx with Sovaldi/Olysio/Riba. VL 39 mil. - VL 230 @ 1 week, VL 40 @ 3 weeks, 5 weeks UND, EOT - UND, EOT @ 4 weeks UND, EOT @ 12 weeks UND!
Neil_Canuck


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I, too, signed the petition months ago. You can get 25 million people to sign the petition but if Gillead chooses to ignore it then that's up to them. Nobody can force them into an unwanted partnership. 11 billion dollars was a hell of an investment on their behalf and I can understand them wanting to recoup the money by themselves. As for your other claims about other drugs we'll wait and see. One thing is certain...this forum is well up on ALL the latest news and results and we have people here that did the trial with GS 7977. There's a sh**load of other drugs coming along.

I'm not impressed with your fearmonger tactics to try and scare people out of biopsies. Until Fibroscan is available in the US biopsy is still the gold standard. From what I've researched the Fibrosure blood tests are NOT as accurate as biopsy and the people here who had one have shown little discomfort. 



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58 yrs, cirrhotic, Genotype 1b 48 weeks Victrelis triple, SOT 7/13/12 victrelis started week 5. Starting VL 4,000,000  Wk 8 33 copies  Wk 24 UND, EOT UND 6 months post Tx DET. The battle goes on.
Biggyb


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Marilyn,,here is the petition i signed on this forum.

 

EVERYONE  YOU NEED TO SIGN THIS PETITION for Gilead sciences to get off their a$$ RIGHT NOW  and release 7977 that is a big stumbling block

 http://www.change.org/petitions/gilead-sciences-please-collaborate-with-bristol-myers-for-the-cure-for-hepatitis-c-now

Along the side or that page is all the reasons why BUT if this turns around quick and thats the Key 100,000 signatures and pushes the release of 7977 it paves the we of the power we will have over the drug companies No just us but all reaseach that becomes a choice about money and markting WHILE WE CONTINUE TO DIE AND  GET SICKER

Sign it and passit on to anyone you have told about you condition    OK????? Thanks

Bill S

http://hepcfriends.activeboard.com/t50652266/everyone-you-need-to-sign-this-petition-now/




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58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~
ArtiesGarden


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Marilyn or (Margaret), I wrote a letter to Giliad several months ago as I'd many people on this forum. I checked the link you provided and it is the one I used previously. There are a lot of people that have had Hep C for as long if not longer than you and we're all in this boat together. There are a lot of with C -1A which is the hardest to cure????. I have waited 6 months to meet with the Hep clinic and I have 1 more month to go before I see the Hepatologist. I will take what ever they offer because I want to be well again, and if the cure is worse than the disease, at least when it's over I can start traveling again. I know that you think we don't care about signing the petition but like I said a lot of people from this forum have, and I for one don't appreciate some of your posts about this issue you started. We are here for support not to be condescending as you are and who are you to tell someone their treatment won't work.

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HCV Gen 1a, VL 13.2 million, diagnosed in August 2012, have had disease since the early 70s. Have had appointments postponed at UAB 4 times. Don't know when I will see Hepatologist, hope it is soon so I can get this show on the road.
Marilyn


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You don't get it either.  There is a treatment, a human treatment, without side effects, that can cure you 100%, but you have to sign the petition. 

This petition as of today has 10,000.  I have no idea what you signed.  Read the petition and click on the link, and learn.

We have 2.3 million with hep in the US, and only 10,000 signatures, thats a lot more people who need to be reached.

There is a treatment with 100% cure, no side effects, this is being held back because of corporate greed.

As far as me trying any treatments any trials or drugs with the "rat drugs"  sorry I can't do that to my self.  And I am sorry that you did.  But you can help yourself if you are still positive and you can help others, sign the petition, click on the link and learn.



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Marilyn A. Leisz
Marilyn


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Yes you can.  Your current treatment is most likely not going to work, sorry.  You can sign the petition and get a treatment out there that will work for all.  New cases, old cased, failed cases, all geneo types. 

I guess I picked the wrong group to waste my energy on.  Ya all would think it your group that had the experience of the torture of the treatments out there now....you would want to fight for a cure that will really cure you and cure you without the side effects.



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Marilyn A. Leisz
Marilyn


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First GS5885 does not work.  Gilead is not having any success with there sofosbuvir and GS5885 only when they put it wit RBV and then the patient get hep back in a matter of a short time.  It seem you like the idea that corporate greed is good, we can die for your corporate greed.  You haven't checked the latest studies out, the GS5885 is not working.

 

If there are 2.3 million hep postitive people in the US and as of today we only have10,000 who have signed the petition that either means:

1.  ya all don't really know about the treatment that will cure you without side effects.

or

2.   ya all signed some other petition.

or

3.  ya all like being used as lab rats

My liver does not need a biopsy.  I guess you haven't heard this one either ....that a liver biopsy is no longer the "golden rule" to test the amount of liver damage you have.  Look it up.  There are a number of invasive tests today that can be done that are more effective than a biopsy.  Sorry that you had to be scared into a biopsy.  I waited and had a senitive blood test that shows I only has some liver damage no cirrhotic conditions exsist here.  Yes, I have been blessed. 

I am only trying to get the word out and help  and I have no idea what you people read or looked at but you are not getting it, you are not seeing the light.  Do you want to continue to be lab rats or do you want to be cured humanly.  I want to be cured not tortured and then told I am still sick.



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Marilyn A. Leisz
Biggyb


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Believe me we can't do much. The majority are on here for support of treatment issue's.



__________________

58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~
Marilyn


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Hi,

 No liver biopsy for me, I had a aunt who was a nurse (she is deceased now) and she told me never to get a biopsy, and I'll stick by that.   Now new report out is that  liver biopsy is not that accurate because it depends where they take the tissue sample,  chances are they will miss the scarring, etc..  It is not the "golder rule" any more, just a money maker.  Many are scared into getting a biopsy just as many are scared into taking the inhumane drug treatments. These scare tacktics are what all Hep patients need to be vigil about.    There is just to much room for errors and mistakes, unless it life threatening  NO BIOPSY.  There are a number of less invasive means to check your liver out today.  I had a special blood test that show some liver damage, after 42 years of having hepatitis I guess so! 

Geeeee if everyone on this site has signed the petition, and we now have, as of today only 10,000 signatures on the petition and we have 2.3 million people with hep in the US, I must be needed to put my energies else where.  Geeeee 2.3 million minus the 10,000  geeeee that leaves alot of hep patients that have not signed guest I have got to go find them.  Or maybe you guys sign some other petition.   This one has the support from the AIDS foundation??

    Or what are you doing to spread the word about a new treatment that cure hep 100% without side effects?  What are you doing to get more people to sign the petition?  This cures new cases, old cased, all genotypes!



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Marilyn A. Leisz
mallani


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Hi Marilyn,

We are all aware that Gilead Sciences will not work with BMS. GS has developed it's own NS5A inhibitor, GS-5885.

Your comments about 100% SVR rate without Ribavirin , using sofosbuvir and daclatasvir for 12 weeks, have not been proven. Only small Phase 2 trials were completed and only Geno 1 patients without cirrhosis were allowed. Most patients did 24 weeks and half used ribavirin.

Trials are underway using sofosbuvir and GS-5885, w and w/o ribavirin. Interim results are encouraging. I don't know how you can say 'results are poor' when the Phase 3 results have not been announced. Results may be as good as when using daclatasvir.

Gilead can combine it's drugs into a single pill or capsule. As they paid $11billion to acquire sofosbuvir, they will not share the spoils with BMS.

If you have had HCV for 42 years, I'd be more worried about getting a liver biopsy, as you may be cirrhotic and require urgent treatment.



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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
12Step Guy


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Marilyn, thanks for posting. The petition and situation has been covered and discussed on this board many times. So, while it is not new information, it is important that we all help to get progress on this. If you read this board on a regular basis, there are many. many updates on clinical trials and new drugs. Hope something comes along that your willing to try.

Vern



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Genotype 1a, IL 28 = CT  Interferon and riba 48 wks in 99, Daily Peg and Riba 18 months in 2007, Started Incivek, Peg, Riba 6/21/12. 4th stage cirrhosis. Last Dart will be May 23 2013.
JoAnneh


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Hey Marilyn,
Welcome to the forum. I signed the
Petition months ago as have many members.
Have you had a liver biopsy?


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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
Marilyn


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Hi All, I have had hep C genotype 1a now for 42 years, I was diagnosed with hep before they had tests to tell the genotype.  12 years ago I looked into the treatments for hep C and was horrified at what they did to you.  I have been very fortunate until recently.  My ALT and AST were always in the normal range, I continued to hope for a new treatment that was more humane than what is available.  Well this December I had blood tests and my ALT and AST were 3 x higher than normal.  My viral load shot up to almost 6 million.  I got on line and discover that they have a new cure out there with mild side effects. This treatment does not use Interferon or Ribarvirin.  The problem is that one pharmacutical company owns half of the treatment and another company owns the other half (Gilead).  BristolMyer Squibbs is willing to work with Gilead Pham. but because of greed Gilead, Gilead does not want to work BMS.  I know what you folks are going through (I've researched it for 12 yrs now) it is living hell.  Statistic and facts have it that you may show SVR at the end of this horrible treatment...but hep comes back months later.  This new treatment works on first timers, retreatments, different genotypes, no relapse.  Please Please go to www.hepc-cured.org and sign the petition to have these 2 companies release this cure to us now without the further greed and before more people die due to corporate greed.

This my first post here.  I am trying every aveue I can think of to get the word out there...we can be cured...and cured without the side effect of Interferon and Ribavirin.  Please let me know that I am reaching you!



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Marilyn A. Leisz
mallani


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Hi Marilyn,

I admire your zeal, but it's a shame you bend the facts.  I realise you are only quoting from the 'fact' sheet supplied with the petition.

Sofosbuvir and daclatasvir w and w/o ribavirin was only used in some small groups of Geno1 , non-cirrhotic patients, mostly treatment naive, usually for 24 weeks. 12 weeks of sof. and dac. without ribavirin, has only been used in a small group of 18 Geno 2 and 3 patients, who were treatment naive, mostly white, and most had the favorable IL28B CC alelle.  Your claim of 100% SVR for all Genotypes and regardless of treatment history, is not correct.

Please supply evidence that GS-5885 is ' harmful to the patient' with 'poor results'.

Our members have had excellent results from triple therapy, with many achieving SVR. Yes, there are side effects, but at least we are doing something to treat our disease, unlike you. Your claim of ' treatment won't work, sorry' is an insult to the Forum.

Many Forum Members have signed the petition. To say they didn't is insulting.

Gilead will only listen to it's shareholders. They have factored in the fact that Gilead will not work with BMS.

By all means listen to your aunt, and don't have a liver biopsy. Have you asked yourself why Drug Companies only accept liver biopsy as a measure of liver damage, prior to entering trials?

If you wait 5 years, both sofosbuvir and daclatasvir will both have FDA approval, and Hepatologists will be able to mix and match.



-- Edited by mallani on Tuesday 15th of January 2013 01:56:15 PM

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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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