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Hep C Discussion Forum -> Clinical Trial Participants -> Treatment Completed !!
Post Info TOPIC: Treatment Completed !!
Terry


Senior Member

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Date:
Treatment Completed !!
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Well Jack I think I have had about enough of this nonsense and I have a meeting set up with my own doctor to arrange to take my blood tests here. In Canada I can have a blood test and the following day go on My E Health and download all of my readings and I only got part of them on Friday and they had over a month to get them. But I find it hard to believe that Abbvie is the stumbling block on getting this to me.

I can't see how you could possible work with patients that way. Every second time I went in there was always something missing from my report so there is no point to keep butting my head against a wall I will have to get proactive again and do it myself. Not quite sure how to inform abbvie but I will by the end of the week. If in fact the bottleneck is here I am sure they won't be happy. I was under the impression that both parties were in this together but I looks like they don't see it that way. I have completed treatment so no more drugs to take unless I relapse and then who know what they will try but as I think Matt mentioned once it seems to be very close to the existing one but removing the ABT-333 and replacing it with Interferon and I had already told them I would not take that.



-- Edited by Terry on Tuesday 8th of October 2013 09:16:44 PM

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Geno Type 1a stage 4 cirrhosis EOT 52 weeks SVR !!
TeddyTrout


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Hi Terry, hope you go SRV with no side effects. I too was told that I had about 3 months in 1999 as well but I'm still here and kicking. Hang in there and I hope you recover quickly. 



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Don't sweat the small stuff, it will only give you hair loss.
Cinnamon Girl


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Hi Terry, well done for getting to the end of your 24 weeks, congrats!!  You`ve shown great determination in getting yourself onto this trial after such negative input from your previous doctor, and then going through treatment with very little support.  I really hope you don`t have to wait too much longer for your results, it must be so frustrating for you. Your blood results are looking great so try not to worry unduly.

You should go out and celebrate reaching the end of treatment anyway, it`s a great achievement!  smile

Wishing you all the best...keep us posted.

 

 



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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.

 

 
hrsetrdr


Guru

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Posts: 940
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Hi Terry, It sounds like you've really "been through the mill" on this whole treatment; the "Mr. 3 month" Dr sure wasn't much help. Best wishes and hoping for your UND...SVR results.

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"hrsetrdr"=Tim

Treatment halted on Aug.8,2012 due to vision problem.  6 month post tx labs

Aug.2013 SVR

Be strong when you are weak, brave when you are scared, and humble when you are victorious.
- Unknown

 

 
Biggyb


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Nice job Terry, i also would bet your UND. Here we get a blood test the results are back in 2 to 3 days. Hang in there buddy, your doing everything right.



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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~
mallani


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Hi Terry,

Congrats on finishing Rx. I was very interested to hear your Fibroscan reading of 33 kPa .  My result was 30 before Rx, and this was the third highest reading my doc had seen. I'll get a followup done in about 6 months.

I'm sorry you guys need to wait so long for your VL results. Over here we can get them the same day, or the next day at the latest.  Anyway, with an ALT of 22, I'll bet you are Undetected.

Sorry to hear your experience with the Medical profession. Shop around until you find somebody you can trust.

I'm now playing golf 3 times a week, and it's getting hot! Yesterday was 35C and I finally played to my handicap (9). So, expect good things post Rx. Cheers.



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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
garfield


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Hi Terry,

            I did only 12 weeks and thank to my genes it was somatically an easy way for me. But afterwards my nerves were cooking myself goose. 

I can really understand your feelings. During  the first four weeks from every small hurt I was convinced - that was the sign for relaps.

After EOT8 it became a little bit better because I persuaded myself - relaps becomes increasingly unlikely.

With 24 weeks you have a really good basis to reach SVR. So I think you will also relax as times go by. 

 

best wishes   

 



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Terry


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Hi Matt   Thanks for the support and you are right on with your assessment . The mental aspect of the last month was harder on me then any of the side effects. I have been having those what I call phantom pains that move from one place to another and went golfing yesterday but found I was very tired and didn't play well so took today off to relax and recoup . My breathing has not returned yet and still feel like I need to sleep a lot but when I try I am wide awake .lol  

  I am now researching news on liver regeneration because with my compensated liver and a bad 33 reading on my fibro scan I thought that maybe some new treatments might come out down the road to help with that problem. Years ago there was very little in the way of options for Hep C but they have made great strides with the new drugs so just maybe they will come up with a way to aid us with the cirrhosis as well. AbbVie as you know has been at the forefront with this regiment that we took and I have now been reading articles that figure they may get as much as 50% of the market when they get passed. The one thing I will be really happy with is when I get to read that you are SVR and we both know that it won't be far off from now. Take care and Thx Terry



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Geno Type 1a stage 4 cirrhosis EOT 52 weeks SVR !!
Terry


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Hi Dominique  

  I wish it was as simple as you make it out. Because I was planning on going out and celebrating the results but not having them just made me upset and I cancelled all my plans and stayed home. I first found out I had this by a letter that was sent to me instead of my doctor and when I went to talk to him he was indifferent and didn't seem to give a dam.

  My last visit when things got bad he told me in between his personal calls to sell some stock options that I might have 3mths to a year to live. So I turfed him and got a better doctor with a good outlook and have worked hard to get to where I am. So I don't have a lot of faith in most doctors because it's all about the money and most just try and see as many patients as possible and really don't care much about seeking out new treatments. I found this study myself and got myself enrolled without the help of any doctor.

 

 I am of course hopeful that the test for UND is good but I won't feel good until I actually see the results. I understand what you were referring to with Matt's comments but you see my wife didn't want my two girls to know so I had to do this whole program with no support until I found this wonderful site. That hugging thing would be nice but I could get put in jail for just hugging some random strangers...LOL



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Geno Type 1a stage 4 cirrhosis EOT 52 weeks SVR !!
Terry


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Posts: 123
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Hi Dominique Mr. 3 Month was the Doctor I got rid of right after his statement and decided that the best way to fix this problem was to do it myself and have never looked back.  I had to laugh about your tree comment because where I live we have lots of trees and the paper companies want to cut them all down for money and the environmentalists want to stop most of the cutting and their nickname is Tree hugger's..lol    I keep myself very active at work and play so with my two daughters that are the love of my life that takes care of the rest. 



-- Edited by Terry on Sunday 6th of October 2013 07:49:10 PM

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Geno Type 1a stage 4 cirrhosis EOT 52 weeks SVR !!
ios9


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Hi Terry,

Three months to live ???!!  What said that horrible doc is soooooooooo wrong ! he should not be a doctor, how a doc can speak that way ? You know, when I had my fibroscan last February, the radiologist told me my liver had less than 2 years to live. When I told that to the Head doctor last month he got mad, he said nobody can predict such a thing. He also said "look at your results, your liver is working as well as any healthy liver and this is the right answer".

Take this for you as your results are better than mine.

About your new doc showing no interest in what you were telling him : it was Friday, that "no compassion man" wanted to go home and have a nice beer, watching Homer Simpson going to holidays TV show  lol

About touching : do you have any pets ? if yes, sleep with them, it's the best therapy one can have. I'm missing my little pet, he was my warmer bottle at night and my friendly skin too :)

By the way, you can also hang a tree, seriously, have you ever try ? Go to the forest, choose yourself a large tree, and hang him, it will bring you serenity.

Warmest hugs,

Do

 



-- Edited by ios9 on Sunday 6th of October 2013 07:06:22 PM



-- Edited by ios9 on Sunday 6th of October 2013 07:23:24 PM

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Geno 1b. VL 17. M. AbbVie Turquoise II. UND EOT 4. 8. 12. SVR.

"Our task must be to free ourselves by widening our circle of compassion to embrace all living creatures and the whole of nature and its beauty."Albert Einstein

 

 

 
Matt Chris


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Hey Terry 

Congrats on making it 24 weeks, we have all learned with this Abbvie trial it's more about the mental battle than enduring the debilitating physical effects of SOC. 

The whole journey of being on a trial is a lot more stress (I will explain later) so I totally get what your saying Terry. The average time for viral load results are always weeks behind most every other tests but four weeks are way out of normal. Terry I remember a important comment that Malcolm said about test numbers he said "the ALT reading will tell me all I need to know" taking that into account I believe you are in great shape.

All your numbers look very good, best advice I can give is don't start taking a lot of supplements, herbs and other Pills to burden your liver and body after you end treatment. Try to eat as healthy and exercise but don't push to hard. Let your body adapt to the change , where the drugs killed off and controlled the HCV now your body has to control any small amount if any of HCV that may be left over or hidden somewhere.  You may feel a little weak the first two weeks off the Meds but that will subside with a great feeling afterward.

Enjoy the future 

Matt



-- Edited by Matt Chris on Sunday 6th of October 2013 06:12:11 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! 
ios9


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Hi Terry,

Congratulations for your results, better than mine, even thought mine are normal, but not as good as you ^^

I totally agree with you, AbbVie should have given you your 20th week long ago, we have them the following week here. They really play with your nerves, but anyway, it shows they are not worried about you, they know you did it just from the results you had to day.

No need to worry, have some touching like Matt told us in the other conversation, it will makes you feel better.

Nice shirt lol

Do



__________________

Geno 1b. VL 17. M. AbbVie Turquoise II. UND EOT 4. 8. 12. SVR.

"Our task must be to free ourselves by widening our circle of compassion to embrace all living creatures and the whole of nature and its beauty."Albert Einstein

 

 

 
Terry


Senior Member

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Posts: 123
Date:
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 On Oct 3rd I took the last pills for the Turquoise II study with a 24 week duration. While the first few months were a breeze the last month the Ribavirin took hold and really worked over my anxiety level a lot. But I have now finished my part and have come a long way from the start of this program.

  At the start I was very sick and had readings of GGT 217 ALT 247 and AST 137 My platelet count was 115  And my Fibro Scan reading was 33 Making me a stage 4 cirrhotic. My tests yesterday included giving 12 vials of blood , an ECG, an Ultrasound and weight and blood pressure readings. My week twenty results were GGT 25 ALT 22 AST 28 and my Platelet count is now 165. HGB is 11.5 but RBC 3.5 and WBC 2.68 so some work to be done. Now the part I was really upset with was the reading that I really wanted (UND) had a note results to follow.

  And I just sent out an email expressing how disappointed I was that that result was not included. I was told that they were busy but come on . As you all know the mind is the hardest thing to control throughout all of this and these guys had four weeks to get that result and in my opinion had no excuse not to have that ready for a patient that was completing the final phase of the program. They ask us to trust them and be fully compliant with all phases of the study and then a simple thing like having that information ready doesn't seem to matter much to them. I was not impressed !

But now I guess I am just to wait for the final results to see where I go from here.

 That was my rant for the day .. lol



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