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Hep C Discussion Forum -> On Treatment -> 48 weeks of therapy for me...
Post Info TOPIC: 48 weeks of therapy for me...
tonib


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RE: 48 weeks of therapy for me...
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aw gee tig, I was happy you would be done early.... but I guess its better safe then sorry....and lord knows I am already sorry for what ever I did to deserve this beast inside of me....

Well look at the good side...at 12 weeks you are UND so you can move forward with the therapy, This is good, so many people get that far and are told they are non responding....My 12 week is 9/27......yikes...part of me wants to just say I hope I'm a non responder so I can be done with this hell and perhaps wait for a new and shorter therapy...but the other part of me says...And have all this for nothing???I don't think so....lol I talk to myself all the time..biggrin

So we are in this....God bless us all



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 geno 1, started peg and riba 7/5/13, now 29th day is vicrellis ***tonib VL started 6 million, after 5 weeks 374,000, after 8 weeks 150,000....the big test for VL is 9/27 at 12 weeks  TAKEN OFF THERAPY JUST NOT WORKING FOR ME...12 WEEKS STILL HAVE 9000 VL
Tig


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Hi Matt, 

Yes he's a board certified gastroenterologist and hepatologist. I hope you're right that somehow the Yin will be balanced by the Yang! I'm going to get some answers next time I see him and see what his explanation for this is. Hopefully he'll be there, I heard he's on vacation again! That's #4 for the summer, must be nice...



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Tig

68yo 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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Matt Chris


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Hi Tig 
 
I really feel for you Tig,  all that extra time/treatment. In my opinion you are not responsible for knowing the proper VL testing times.  It's a sad testament on some doctors and the care or I should say lack of care.  I can tell you that my experience with the Abbvie trial doctor would rate very low also. There is no excuse that could make logical sense that would expect the patient to know as much as the doctor and have to remind him of his duties to his patients.
If I had patients with a very special HCV treatment that had guided care involved,  both my myself, my nurse and my patient would have a written handout covering every possible scenario and the important dates and conditions that  change the program with adjustments and test givens.
 
Tig   If I read your thread correctly and I might not have this almost borders on Mal practice if he did not account for this possible situation in week eight of your treatment.  Is your doctor a Hepatologist?   Perhaps there will be something in the future that will balance this out in your favor.
 
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! 
Tig


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Thanks Malcolm! It does appear that the failure to complete a VL at 8 weeks will likely be a game changer. That has been eating at me ever since I realized that it had been overlooked. That was also a period when my hepa was enjoying some extra vacation time and he didn't leave instructions to do so. I was new to this treatment and didn't realize the VL should've been done until after the fact. I'll accept some of the blame for not being better informed at the time. BUT I have to wonder, was it my responsibility to be sure the testing routine was being observed properly? I would like to believe that those decisions should in large part be the doctor's responsibility, not the patient's. In any case I'm sure that the proper course of treatment will be a 48 week tour of duty. Call it Hepatitis C (Combat) duty! So chances are likely that I'll be around to see you through Toni! Or how about we'll see each other through? I like that idea!



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Tig

68yo 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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mallani


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Hi Tig,

I can understand your confusion about Rx length. The early protocols on Victrelis used 28, 36 or 48 weeks total Rx. Following further Trials, this was amended in 2011 ( see link) and the 36 week total Rx was dropped. You are in a difficult situation as you did not have an 8 week VL (after 4 weeks of Victrelis) done. As you see from the report, only patients that had Undet. HCV RNA at 8 weeks ( i.e. an RVR) were eligible for RGT. The others all did 48 weeks total (44 weeks of Victrelis). Obviously, cirrhotics did 48 weeks anyway, and many believe F3's and F3-4's should do the same.

Re your past Rx with monotherapy. As you were not Undet. (or RIBA -ve) by week 12, you are counted as a non-responder using my doc's criteria. I was RIBA -ve by week 12 of mono. so I was classed as a relapser.

It's up to your doc to make the call. Cheers.

 

http://www.drugs.com/clinical_trials/data-supporting-boceprevir-response-guided-therapy-presented-american-association-study-liver-8357.html

 



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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
tonib


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Tig you must stay on the forum for me till the end of my tx...I will miss you too much....please promise...xoxo



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 geno 1, started peg and riba 7/5/13, now 29th day is vicrellis ***tonib VL started 6 million, after 5 weeks 374,000, after 8 weeks 150,000....the big test for VL is 9/27 at 12 weeks  TAKEN OFF THERAPY JUST NOT WORKING FOR ME...12 WEEKS STILL HAVE 9000 VL
tonib


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Oh thats wonderful!  I have the cirrohsis, doc said under the microscope....I don't know wth that means.....Well I am happy for you 24 weeks sound wonderful to me!!  biggrin



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 geno 1, started peg and riba 7/5/13, now 29th day is vicrellis ***tonib VL started 6 million, after 5 weeks 374,000, after 8 weeks 150,000....the big test for VL is 9/27 at 12 weeks  TAKEN OFF THERAPY JUST NOT WORKING FOR ME...12 WEEKS STILL HAVE 9000 VL
tonib


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Tig56 wrote:

Is this your first attempt at treatment? I've been getting conflicting information from different sources, so I'm not sure what will happen. I wasn't UND at 8 weeks either but Victrelis patients don't have to be until week 12. I was UND at week 12 and even though I was a non responder to mono therapy in 96, my doctor claims I may be able to end treatment at week 24 or 28 (I'm not sure), as long as I remain UND until then. Malcolm said his doctor would have me go out to 48 weeks but two other doctors I've talked to said that may not be required. They call it response guided therapy. So who knows? I would love to end treatment at the 6 month mark, but I'd hate to quit early and wish I hadn't! 

 I read the information on the vic and that is what it said, if you are UND at 8 weeks then you can stop treatment at 24 weeks, however, if your not UND at 8 weeks you have to remain and get tested at 12 weeks, if you are UND at 12 weeks, then you go 48, If you still have VL at 12 weeks most likely go off the treatment.......but I like what your doc says about the 24 weeks, do you have cihrosis?  My doc said 24 weeks for peeps without the cirohsis, ......



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 geno 1, started peg and riba 7/5/13, now 29th day is vicrellis ***tonib VL started 6 million, after 5 weeks 374,000, after 8 weeks 150,000....the big test for VL is 9/27 at 12 weeks  TAKEN OFF THERAPY JUST NOT WORKING FOR ME...12 WEEKS STILL HAVE 9000 VL
ucbgal


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tonib,

     hang in there tough chickie,you CAN & WILL do it.

     who said life is fair?

     treat yourself well....

sandy,ucbgal



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Tig


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Is this your first attempt at treatment? I've been getting conflicting information from different sources, so I'm not sure what will happen. I wasn't UND at 8 weeks either but Victrelis patients don't have to be until week 12. I was UND at week 12 and even though I was a non responder to mono therapy in 96, my doctor claims I may be able to end treatment at week 24 or 28 (I'm not sure), as long as I remain UND until then. Malcolm said his doctor would have me go out to 48 weeks but two other doctors I've talked to said that may not be required. They call it response guided therapy. So who knows? I would love to end treatment at the 6 month mark, but I'd hate to quit early and wish I hadn't! 



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Tig

68yo 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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tonib


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Oh boy, I just realized that because I was not UND at 8 weeks I will have the 48 weeks of therapy, or if I just don't go UND by week 12 then I'm off the therapy....either way I am so miserable....I so wanted the 24 weeks...This is so not fair...hmm

 

GIVE ME STRENGTH!!!



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 geno 1, started peg and riba 7/5/13, now 29th day is vicrellis ***tonib VL started 6 million, after 5 weeks 374,000, after 8 weeks 150,000....the big test for VL is 9/27 at 12 weeks  TAKEN OFF THERAPY JUST NOT WORKING FOR ME...12 WEEKS STILL HAVE 9000 VL
Tig


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No cirrhosis. As usual the more I research, the more differences I find. One thing I find varying opinions on is if my first course of therapy even matters. All the algorithms refer to past treatment regimens of Peg/Riba and my only treatment was in 96 and was 12 weeks of Interferon alone, or mono therapy. Some I have spoken to don't even consider that as a serious try and have said they don't consider that as valid. There is a question if I was considered a non responder or partial? Again there are different opinions. Then there is the fact that my doctor didn't even do a VL at week 8. He did one at week 4 (end of lead in) and the VL had dropped from 5 Million to 16,000, both <43IU/mL. I wonder what that week 8 VL with a solid month of Victrelis would've shown? Who knows and I'll have to ask if that may be part of his current line of thinking. If you keep following the algorithms, even year to year, there are treatment options of 24, 28, 36,44 and 48 weeks, some with stopping Victrelis and continuing with Peg/Riba and some going the distance with all three drugs. It's no wonder there continues to be widespread confusion on this subject. You really can't even find accurate SVR rates now, especially considering these various treatment lengths! I guess there isn't much money or interest in finding out those rates anymore. At least there doesn't appear to be. It's all about the "NEW" drugs on the horizon. More research dollars going that way, it's always about the money!!



-- Edited by Tig56 on Monday 16th of September 2013 11:36:09 PM

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Tig

68yo 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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