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Post Info TOPIC: Hi folks, started a clinical trial about 8 weeks ago


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RE: Hi folks, started a clinical trial about 8 weeks ago
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Thanks so much, Matt.  It feels really good to talk to people who are going through the same things.  I'm happy you finally got into a trial - how are you feeling?  I've heard really good things about the Abbott study.  I think if I had any words of wisdom for people starting out on the yellow brick treatment road I would say - you have to be your own advocate, and you have to persist.  I personally found that to be true.  Karen



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GT 1b, VL5Mil+ when diagnosed in 2012, acquired HCV 1970; BMS 3 drug clinical trial 2/13, und 12 weeks post treatment, UND 24 weeks post treatment; UND at 18 months, UND at eot + 2 years. Still UND at +5!



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Karen 

I'm doing ok, the Ribavirin tends to slow me down some the worst side effect of these Meds on me seem to be raised Billirubin Level that yellow my eyes and skin more than I like. Compared to the SOC its a picnic.

Your absolutely right about the correct mind set on being your own advocate, following the study's and keeping informed about the latested research on HCV keep you ahead of most of the GP's. It seems only the Hepatogists, and infectious disease and some Gastro doctors keep up on the latest developments.

The area that most intrigues me is Pharmacokentics or PK for short, it's the main reason that phase III studies are put into action. (study of dosing and duration) My interest is in the data that is being generated by myself, which I am not privy to. I wrote about it more depth on my thread (Turquoise II open label study)

Karen does your study allow you all your lab results?

Matt



-- Edited by Matt Chris on Saturday 6th of April 2013 04:25:58 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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Hi Karen,

 

Welcome glad your on a trial and even better to know you don't have any SX. I am on an Abbott trial...my first twelve weeks I just found out yesterday was placebo but today is a new dawn and I am on the real drugs now.

You will find these people on here become your second family...very nice group of folks. smile



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Geno type 1A Started Abbott clinical trial mid Jan 2013. :-)

Viral load when I started this trial 4.75million  Went 12wks on placebo and started real meds on 4/5/13 after 1wk  on real meds 25 after UND @3wks,6wks.w00t: Done trial 6/27/13 and still UND.

 



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Hello Karen and welcome to the Forum

Enjoy reading your story at the web site link you provided.

Cool word "Kafkaesque " for describing clinical studies.

I can really relate on the worries and frustrations about getting and keeping qualified for a clinical study group. I had a similar experience with my Abbott Labs Turquoise II study enrollment.

Jumped through all there hoops including Hospital Liver biopsy only for the Radiolgist to declare me not really cirrhotic. Then the bad news comes and they say not meeting critria of being cirrhotic, out of study.

Bummed out for two days then get call from nurse that Abbott changed their mind and I'm back in. My local study Doctor debated with the Radiolgist and the doctor at Abbott and they raised my biopsy score. Obviously very happy and bewildered all my prayers seemed to be answered.

This forum needs in person like you that can express themselves in print, please join us and engage us in the topics and caring concern for other members.

Matt



-- Edited by Matt Chris on Friday 5th of April 2013 07:22:56 PM

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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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Hi Jill, yes, that's the very one! Its a very intensive protocol - for the first month I basically had a blood draw four or five days a week. I'm down to every other week now, and collecting frequent flier miles like crazy.

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GT 1b, VL5Mil+ when diagnosed in 2012, acquired HCV 1970; BMS 3 drug clinical trial 2/13, und 12 weeks post treatment, UND 24 weeks post treatment; UND at 18 months, UND at eot + 2 years. Still UND at +5!



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Hi Karen, welcome!  Sounds like you`ve had quite a search to find a suitable trial and it`s good to hear that it`s going well for you so far.  Is this the one you are on? 

http://www.clinicaltrials.gov/ct2/show/NCT01455090?term=BMS+AND+Hepatitis+C&recr=Open&no_unk=Y&rank=7&submit_fld_opt=

All the best of luck, do keep us posted!  ~ Jill



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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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Well, I'm in the Bristol Myers trial with 3 antivirals - no interferon or ribavirin - and so far it seems good. I haven't had any side effects to speak of, and I was UND at 21 days (knock on wood) and so far, so good. Liver enzymes are now within normal range. It has been a whirlwind, though, because I spent several months looking all over the east coast for a study that was right for me. (I started a blog of my experiences, if you are interested - its at http://mmillercollaborative.wordpress.com/ ). Unfortunately I am cirrhotic. In terms of other factors, I'm a Ib genotype. Karen

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GT 1b, VL5Mil+ when diagnosed in 2012, acquired HCV 1970; BMS 3 drug clinical trial 2/13, und 12 weeks post treatment, UND 24 weeks post treatment; UND at 18 months, UND at eot + 2 years. Still UND at +5!



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That certainly is intensive!  I admire your determination and really hope it pays off for you!  It`s great that you don`t have to do interferon shots or take ribavirin on this trial. 

Actually, I`m moving this thread to the Clinical Trials section so it stays with the other trial threads.  If you have a browse through you`ll see we have other members currently on various trials.






-- Edited by Cinnamon Girl on Tuesday 2nd of April 2013 06:36:27 PM

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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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Hi Karen,

Welcome to the Forum. What Trial are you on? Obviously you have had a full liver assessment with Viral Load, Genotype, full blood tests and a liver biopsy to see how much liver damage you have. At your age and length of history, you probably have some liver damage but some of the Trials are getting excellent results. I am now 70 yo and had HCV for 40+ years and have cirrhosis. However I have just finished 48 weeks of triple treatment and am hopeful of clearing the virus. Good luck, and keep us informed of your progress. cheers.



-- Edited by mallani on Tuesday 2nd of April 2013 12:58:07 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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Welcome, what trial are you on? How is it going?

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.



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Its been quite an a adventure, this Hepatitis C business.  I'm 68, retired, and found out just about a year ago that I'd been nursing a case of Hep C for the last 43 or so years.  Its nice to read about how other people are dealing with this....thanks!



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GT 1b, VL5Mil+ when diagnosed in 2012, acquired HCV 1970; BMS 3 drug clinical trial 2/13, und 12 weeks post treatment, UND 24 weeks post treatment; UND at 18 months, UND at eot + 2 years. Still UND at +5!

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